Jason and Deanna's Family

Oxygen

2012-01-28T16:13:00.003-07:00

Today has been an emotional day. I don't know if it because I am fighting a head cold, if it is because of pregnancy hormones or what. But sometimes I really hate days like today. Sometimes I hate being so "strong" and everyone thinking that we can handle everything so fine without much help from others.

Anyways, I was having a discussion with someone about Gracie and how her new diagnose of asthma may keep her from finally being able to get rid of the oxygen that has been a constant in her life. Before this flare up she was only on 1/4 of a liter both day and night, now we have had to increase it to 3/4 of a liter and her sats aren't even as high as they first were after the fontan. I had mentioned to this person that I think because of the asthma she will have to remain on oxygen day and night. The response I got was depressing in a way. "Well, that isn't that bad. Yes it would be nice to have her off for even a couple of hours but it isn't that bad to have to stay on oxygen."

Though this statement is true, it still upset me. Maybe I was looking for more sympathy or more understanding, who knows. But as I mopped the kitchen floor this afternoon, this conversation just kept playing over and over in my mind.

Yes I am grateful for Gracie's oxygen. It is a love hate relationship. I am grateful for it because it helps her heart and her lungs. I am grateful for it because I know that it has helped prolong her life. But I hate the inconvenience it is, for everyone, but mostly Gracie.

I hate how we can't go to the playground because she will constantly get tangled up or get whacked in the head by a tank trying to follow her around and maneuver her and the oxygen. I hate that we get stare from others like she is too sick to be _________. I hate that the poor child trips over the oxygen daily and falls to her feet crying. I hate that she is constantly tethered and can't play like her bothers and sisters. I hate that she doesn't know what her face feels like without the oxygen and I hate that she feels so unsafe when it is out of her nose. And I can go on about how restricting and bothersome the oxygen is...but in the end, I feel guilty because it is helping my girl be here.

I hope that I am wrong. I hope that maybe just maybe she will be able to experience even just a couple hours a day off of oxygen. What a feeling to feel free. To have nothing holding her back from being a kid!

CHD Awareness Week is coming

2012-01-18T22:08:00.003-07:00

Congenital heart defect awareness week is February 7-14, this year and I am so excited. Since becoming a heart mom, 3 1/2 years ago, Valentine's day has come to mean something different to me than a romantic holiday. Valentine's day and all the hearts that come with it, remind me of my sweet Gracie and her miracle heart.

Though I have wanted to do something for CHD Awareness week in the past years, I really didn't have the energy to do much more than what was on my plate with my own family. But now that Gracie is older and so much more stable and stronger, I feel it is my blessing to spread the word about heart defects and hopefully help open the eyes of our community to the impact CHD's play on families, individuals, and the communities in which they live in.

This year, I have a couple of things up my sleeve. I have contacted many different groups of people to see if I can do a little presentation about CHD's and their impact and ways we can all make a difference in CHDers' lives. Also a very good friend is helping me with another project that I am just ecstatic for---you'll have to wait a little while till that is unveiled.

Anyways, as my mind has been turned to how I can help during CHD week, I have been thinking more about my sweet Gracie and all that she has overcome. Just today, I went back through all of my blog posts from the day that Gracie was born and read all that Gracie has gone through. My goodness...she definitely defied the odds and has shown so many that God's grace is upon all of us.

Just a few photos that show how far Gracie has come in her 3 1/2 years.

Update

2012-01-05T09:39:00.010-07:00

It seems as if we have fallen off the face of the earth since Gracie was in the hospital, but that isn't the case, we have just been kinda crazy around here. So this is my attempt to update what we have been up to and hopefully stay on top of blogging again.

Morgan--She is doing great. She just started preschool again in January and though has only gone once, just loves it. Morgan is and always has been a social butterfly. She never worries about making friends and just knows that everyone wants to be her friend. It really is a great quality---wish I had it.

Morgan had a hard time with Gracie's last surgery and really struggled for weeks even after Gracie had come home. But she is back to her happy self and is so proud of her sister. Yesterday, Morgan accompanied us to Gracie's feeding therapy session and while in the waiting room was playing with a little girl. The little girl wondered why Gracie has oxygen and Morgan told her about Gracie's heart and even had Gracie raise her shirt to show her Gracie's heart. I love that Morgan embraces all Gracie is lovingly and with such enthusiasm.

Christmas was good for Morgan. All she really wanted was training roller skates. Dad made sure it was one of the last gifts she opened--it was kind of sad, after each gift she got more and more discouraged because it wasn't what she wanted. Morgan loved all the joy and excitement that came with the Christmas season, one of her favorites was hearing the many knocks on our door of surprises our wonderful friends and neighbors left on our doorstep.

Gracie---As you all know she had her 3rd open heart surgery and shocked us all at what a superstar she was. She was out of the hospital in just 10 days!! After her other surgeries, she wasn't even extibated after 10 days. And other than a four day stay a couple days after being released, her recovery has been amazing.

The fontan really has been great for Gracie. She has more energy, her speech isn't as labored and breathy and she is eating more orally. Though she is still completely dependent on her g-tube, she has gone from eating barely 2 TBS of food a day to about 1/2 c of food a day. It's incredible, yesterday we actually talked with feeding about the things we need to do to start making her less dependent on g-tube feeds.

Gracie started going back to preschool this week and couldn't be happier. Her teachers can't stop commenting on how much more energy she has, hope they think its as good of a thing as we do!

She is loving Primary at church and loves that she gets to sing and be with her friends.

And perhaps the most exciting news is that she is now down to only 2 different meds each day, one is just once a day, the other is 3 times a day. No more diuretics!! She has been diuretic dependent her whole life. And if she looks good at her follow up cardiology appointment in February she just might be able to lose the oxygen!!! I cried when her doctor told me this, then I freaked out. Will I be able to sleep if she doesn't have oxygen on at night?

Gracie loved Christmas too. She loved to sit on Santa's lap and told everyone that he was coming to her house to bring her presents. Santa didn't disappoint. Her favorite gift is a doll house Grandma and Grandpa helped us get(they bought new furniture and there was a promotional for a 50' doll house for cheap) for her and Morgan.

Ryan---This boy does not stop growing! Perhaps it is because he doesn't stop eating!! Ryan is such a joy to be around. His personality really reminds me a lot of Morgan's. He is a flirt and plays and flirts with both men and women. Last week at the grocery store he found a guy who he must of thought looked interesting and every time we passed him, would just point at him with this cheesy grin on his face.

He is walking like crazy now and thinks he can do everything his sisters can do. His favorite words are cracker, too (both refer to food), wa wa (drink), and moo (move). Grandma and Morgan have taught him to say poo poo and because they laugh when he says it, he always laughs now when he says it. And on occasion, if I am really lucky, he will tell me da do (love you).

Ryan is a mama's boy through and through. If I am holding Gracie or Morgan, he immediately climbs up to my lap and starts pushing them saying, "moo, moo". Even if Jason just puts his hand on my shoulder he freaks out and starts telling him to move. It is quite funny, though we are trying to teach him not to do it. This boy is going to have a real hard time come summer.

Jason--He is doing well, especially now that work has slowed down quite a bit for him. Mailmen really do dislike December! But he really can't complain much, he has had no snow to deal with yet this season.

As for me, I'm doing well. Things have been tough these last few months taking care of Gracie and helping everyone overcome the emotions that came with her last surgery. Its amazing no matter how long of a stay at the hospital, it really does rock the whole boat. Hopefully things will now get easier and I will stop being so sick, but other than that, I really can't complain.

Life is good. We are loved, blessed, and together. I am so grateful for my family, it really is a good one, we all love each other and just want to be with each other all the time. What a great change from what I experienced growing up!!

Floor life

2011-10-25T08:32:00.003-06:00

Sunday we were moved to the floor around 4:30pm, it was a pretty quiet day and Gracie literally slept from 3pm till almost the next morning, waking up only to vitals. I still can't believe we are on the floor so soon! Part of me keeps holding my breathe for some big set back. But really Gracie is doing great considering she just had heart surgery a week ago.

Yesterday was perhaps the busiest day anyone can have on the floor. It wore me out as well as Grace. It's no wonder she is stii asleep, her crazy day allowed for hardly any nap time. We started the day at 5am with morning labs and walking down to x-ray. We came back and watched some Mickey Mouse (no day can start without this). Gracie got out of bed at 8:30am to try walking again, she did great and walked for about 20 minutes (we just held her hand to stabilize her). Walking back to her room we were greater by physical therapy, they played with Gracie for a couple of minutes then we went back to rest for a bit. During this time, we found out that the swallow study we had schedule on Saturday had been cancelled because there were no speech therapist working. I just wanted to cry, all Gracie has been asking for is water and she has to wait a day because no one was working, ugh!
Conveniently while the doctors rounded at 10:30ish, a speech therapist walked by and Annie, the NP for cardiothorasic surgery, knew she was a speech therapist, so they were able to convince her to squeeze Gracie in. I was thrilled, I don't know if there ever was a more excited mama to take her child in for a swallow study. The first sip of the barium drink caught Gracie off guard, but then she gulped down six sips of the barium drink (I guess at this point she didn't care what she had to drink as long as she got a drink). It appeared as if she did great with the swallow study, but 10 minutes after we got back to the floor the speech therapist called and said Gracie ever so slightly aspirated with that first taste, that she needed to take it slowly and could only drink teaspoons of water for now. So I spend most of my time spooning her water--it's not that bad since she sabots every spoonful.

Immediately aftervwe came up from doing the swallow study, Gracie got some loratab and we went down for 1 1/2 hour echo. After which I tried my hardest to get her to nap but she refused, so I took her for a little wagon ride that ended in the playroom for about 20 minutes. By the time we got back to the room and settled, she was ready for bed at 7pm. But that didn't last, she woke up 15 minutes later. I eventually got her to sleep and she did ok through the night.

Today it hasn't been nearly as busy. We went for a morning walk after x-ray and a little nap, then we went down to the physical therapy gym to play, got a 24 hour halter monitor placed and is now sound asleep.

I am so grateful that this round has been so much more improved than other the othe surgeries, but even this stay is hard and I find myself just breaking down and crying.

Another update

2011-10-22T14:01:00.002-06:00

We are five days out from surgery and doing ok. We are still in the intensive care unit and will be at least till tomorrow and maybe till Monday. Gracie has been fluid negative the last two days, but unfortunately there has been very little change in her chest x-ray. Her lungs are still so hazy. The Attending, is wondering why her lungs haven't changed with how negative she is, she has a couple of guesses 1. She has developed a cold--so now she is on precaution. Never mind the fact that she has no other signs, no fever, no change in her CBC numbers, and no runny nose. Gracie does cough quite a bit, always has, so... The othe guess is that she is aspirating on the 15ccs she was getting every two hours, so now she is NPO until at least Monday when they will do a shallow study.

I have been uneasy about these suggestions mostly because this response is typical Gracie. She has always struggled with her lungs after surgery. It is just a really slow process for her. So during rounds today I voiced my concerns. I don't like that she is on precautions cause I don't think it is necessary, but I guess it doesn't hurt to do a test. But it irritates me that she can't have any water! She really loves her water it is all that brings her relief and pleasure. I really don't think she has ever aspirated nor is aspirating right now...but my hands are tied. The good thing or what brought me comfort this morning during rounds is that Gracie's cardiologist is on call this last week and after I voiced my concerns he piped up and agreed with me. He said that his gut is telling him that Gracie isn't sick and that he doesn't think she is aspirating but that this is all how Gracie rolls and it will take her weeks to clear her lungs. How great to have a doctor to back you up!

So here we sit just waiting. Grace still has all her chest tubes in, her ART line and an IV in her right hand. Blood pressure is slowly creeping up. We are down from 7liters of high flow to only 2 liters of regular old oxygen. She hasn't pooped yet and is only getting 45ccs of feed every hour. We are still chasing her potassium and trying to figure out why her platelets dropped drastically. Today has been a rough day, really worn out and sleepy. We did get her up and out of bed and tried to get her walking. All she could tolerate was walking about 20 feet before she was done, she cuddled on my lap for 10 minutes then asked to be put back in bed and has slept soundly for the last couple hours.

An update

2011-10-19T15:01:00.002-06:00

I apologize for the lack of updates. Only now, 24 hours after surgery has Gracie been able to really get some rest. When we first saw Gracie after surgery yesterday I was kind of in a false sense of security. Gracie came out without the breathing tube and with her chest close, she has NEVER done that before. Gracie, though extremely agitated was coherent enough to distract her from flailing for a time, but she was putting out too much blood through her chest tubes. So in an attempt to calm her down, two doses of morphine were given and yet nothing seemed to help her. So the doctors decided to give Grace a dose of Ativan, she finally calmed down, but then her blood pressure was too low and she still was bleeding quite a bit. Gracie soon became unresponsive and nothing the docs did would arouse her so a med was given to reverse the morphine. So basically the last 24 hours has been a dance in trying to figure out the right combination of drugs to make Gracie calm enough to slow down the bleeding, keep her comfortable, and keep blood pressure in an acceptable range. After she got multiple doses of blood transfusions, a dose of fresh, frozen plasma, and platelets she is more stable and relaxed. But because so much product was pushed we are very much fluid positive, she has a plural effusion already and in the course of a couple hours her chest got quite a bit more hazy.

So the plan is just to keep her comfortable and get her to pee. Talking to the cardiologist we are just taking it slow and watching what transpires.

We are holding up pretty well. I think the doctors that aren't familiar with Gracie think I must be nuts because they keep apologizing for such the rough path so far, and I keep saying that Gracie is doing beautiful. I guess it's all relative, once you've been throughbwhat Gracie's been through this seems so much easier.

Update #1

2011-10-18T11:30:00.002-06:00

Sorry for the delay in an update, we have been here for several hours with very little progress. We got here at 6am for 7:30am surgery. Gracie was happy and carefree as while we waited. It was sweet while we were driving up here Gracie askednif she could say a prayer ( we had just prayed). Her prayer was simple and so sweet, "Heavenly Father, thank you for my heart. Bless my heart. Name of Jesus Christ, amen.". I thought this prayer was so perfect and though she doesn't comprehend that her heart is broken, she is thankful for it.

While waiting for surgery, we decided Gracie would do better with something to relax her, so she got some versed. Oh my goodness, Gracie was a riot! Though her body was so heavy and hard to control, she couldn't stop hamming it up. She kept wanting me to help her stand up so she could say hi or hello to everyone that passed by us. She was so funny that even the anesthesiologist couldn't keep a straight face. Saying goodbye was hard but she left us laughing as she yelled weeeee as she was pulled into the OR.

My sister-in-law wanted me to post what exactly is being done in this surgery. Basically a gortex tube will be attached to her inferior vena cava and then connected into her main pulmonary artery. This is done to separate her red and blue blood to take some of the work off of her heart. The doctor may also tighten up her mitral valve if it is really leaky.

At 9 am all the lines were placed and the first incision was made. By 10:30am very little progress was made due to the extensive scar tissue. We should be getting another update very soon.

Morgan's Princess Party

2011-10-15T21:48:00.006-06:00

I cannot believe that my baby girl is turning 5! This year we decided that Morgan should have a special party. Last year very little was done for her birthday because I had just had Ryan and this year Gracie's surgery is on Morgan's birthday.

So for the last several weeks Morgan and I have been planning the best Princess Party we could think of complete with some special surprise guests. Though she LOVED the party, I by far loved how excited she was days leading up to the big day.

All day Friday we decorated and prepared for 10 of Morgan's fellow princesses to come and join us for two hours of fun. Daddy was kind enough to take Ryan and Grace to grandma and grandpa's house ( I hated sending Gracie away for the party, but 10 girls equaled too many germs so close to surgery day). Upon arrival each princess followed the red carpet into the party and was greeted with perfect princess music and an opportunity to play on the royal "castle" as we waited for everyone to arrive.

Once all the princesses were there we introduced ourselves and played 'Kiss the Frog.' Each process got their own set of lips and was given an opportunity to kiss our friendly frog, but they weren't allowed to see as they kissed him. The princesses thought it was so funny when the frog got kissed on his eye, belly, or even on the fence he was sitting on.

We then got a phone call that our special guests had arrived. When I announced that I was going to go get the guests the princesses squealed in delight. They all sat on the ground, waiting anxiously. When our guests---real, live, princesses (as one of the girls described them) arrived the girls were awestruck, not one peep from any of them. The 'real' princesses read a story to the girls and even stayed for pizza upon the girls' request.

After the princesses left it was time for each of the princesses to decorate their very own princess carriage. (I made carriages the same way you make cars out of cardboard boxes, painted them gold and silver, put pink tires on them and provided glitter, jewels, stickers, and ribbons to decorate.). The little princesses LOVED decorating and could have done it for hours, but there wasn't time, we still had to have the princess parade. The princesses all rode in their carriages as they paraded up and down the block singing, "we are on a princess parade, we are on a princess parade..." (Morgan came up with the song).

Next it was time for cake. I made Morgan a barbie princess cake and everyone loved it! I set the cake on the table and went back in the house to get some candles and matches, when I came back each of the girls had stuck their fingers into the frosting...it was the funniest thing. After cake, it was time for presents and to say goodbye.

The party was a hit and I was beyond exhausted! But I am so happy Morgan had a wonderful party, she deserved it. This little girl is amazing and we are so blessed to be her parents. Morgan has a level of emotional maturity that exceeds her age. She is sweet, caring, and so tender-hearted. Morgan brings so much joy and happiness to our family. We love you baby!

Cath Lab

2011-10-07T21:27:00.003-06:00

What a long day! Generally speaking it wasn't good or bad, just long. Gracie did great with her cath, what a different experience compared to all the caths she had when she was little. We played and watched Mickey while we waited to go to the cath lab and then after the cath she was fairly pleasant. We watched more Mickey Mouse, Dora, and were even allowed to go on a wagon ride for an hour and half---I think we went up and down the "elegator" 100 times!

For the most part Gracie's cath looked fairly good. Her lung pressures are still boarder line, being at 15% (anything above 15% is a bit too risky), she had a lot of collaterals that they couldn't coil off, but are hoping that after the Fontan they won't be that significant because of where they are. However, there are a bunch of collaterals that branch out into the lungs that could contribute to fluid build-up and retention after surgery. This could be a problem because Fontan kiddos tend to struggle with plural effusions, so this could just compound the situation.

Dr. Kaza the surgeon that will be doing Gracie's surgery seems pleased with what was seen in the cath lab, so we are a go for October 18th. Leading up to today, I wanted so desperately for things to look good so that she could have the Fontan. And now that I know there is no question about it, I am freaking out!!

There are so many factors that we have to juggle while Gracie is in the hospital, I just don't know how we are going to do it. I know that I NEED and HAVE to be at the hospital with Gracie, there is no question about it. I am the one who knows everything about Gracie, I know every reaction she has had, I know what behaviors to expect, I know how to calm her and make her happy. Don't get me wrong Jason knows a lot of these things too, but there is just something about mommies being the one that are most qualified to be with their sick kiddos.

Even though I know my place is with Gracie, I am heart sick that I won't be home with my other two babies. Just today, being gone from Morgan and Ryan all day, drove me nuts! Morgan may be old enough to understand what is going on, but I am sure she is going to still want me home after the novelty of being with family and friends every day wears off. And Ryan is just so little, how will he know that he is still loved? That his mama loves him and wishes to be with him too? The only comfort that I can find and what allows me to know that I can stay with Gracie is knowing that we have a grandma and an aunt who will be taking great care of my babies while Jay has to work and I'm at the hospital.

What a hard road. We're hoping that with lots of phone calls, video chats, and visits and hopefully an occasional switch with dad and grandma we will get through this and all be reunited quickly.

The average hospital stay for this surgery is anywhere between 10-14 days. After a long talk with Gracie's cardiologist, he said he would be extremely happy if she would be discharged in two weeks. With that said though, she has a lot working against her. But I think she has so much going for her now, than she did with her two previous surgeries. She is stronger, fiestier, and healthier. Maybe, just maybe, my Gracie girl will surprise us all and beat the odds and do wonderfully well!!

Can't sleep

2011-10-07T06:00:00.005-06:00

Gracie's cath is in a couple hours and though, sleep would be marvelous, here I am wide awake and have been since 4am and we don't have to be to the hospital until 9am!! It took me forever to fall asleep, I just can't stop worrying about all that this heart cath entails. How will things look? Will she qualify for the Fontan? Will she bounce back from this in time for surgery? Can I really hand her over again and trust things will be fine? And the list goes on. Oh, how I hope and pray that things look beautiful and we will be a go for the 18th.

Yesterday was a very cold wet day. It was kind of nice, I'm one of those people who actually enjoying a break from sun, for a dreary day or two. So while Ryan napped, the girls and I made some chocolate chip cookies. Morgan and I always bake together, but this was Gracie's first time. She had fun for about a minute before she kept begging to get down and watch a show. Making cookies was sensory overload for her. Too many textures and sounds that just made her so uncomfortable, I think she thought I was going to make her touch some of the wet ingredients because she had a look of horror on her face. But she stuck it through till the first tray of cookies went into the oven.

hestitant to taste the cookie

Ryan woke up just in time to try a warm cookie!

Happy Birthday Ryan

2011-09-16T21:29:00.000-06:00

Tuesday was our little man's 1st birthday...man that came fast! I think after having Gracie and her being little for so long makes it seem like Ryan is growing up WAY too fast.

Ryan truly is the most smiley and mellow baby ever. We love how happy and easy he has been. It is so much fun watching his little personality come out, everyday it seems like he is more and more little boy and less and less baby. Just today, during our walk, he would not take his eyes off the big ride-on mower cutting the grass at the park today. He watched, babbled and pointed in excitement until he could hardly see the mower any more.

Boys definately are inately different from girls, or at least my little boy is. He loves balls, books, cars, machines, and absolutely loves to torment Gracie. It is hilarious to watch him go over and crawl all over Gracie, while she screams in protest. The moment we move him away from her, he can't crawl fast enough to go in for another attack.

Ryan loves to give kisses, but will only give them to Jay, the girls and myself---I think grandma's mission is to get him to give her one of his open mouth kisses that he ends with a big grunt.

Ryan loves to eat, but refuses to let me feed him. It's kindof funny because he eats best with a fork, feeding himself. His absolute favorite foods are eggs and bananas, can never get enough. He hates apples in any form, kind of interesting.

We love this little guy so much and can't imagine life without him.

First Day of School

2011-08-30T21:42:00.001-06:00

Today was it, the first big day of school. Gracie did great or at least that's what I think---I haven't had any correspondance from her teacher today and she really doesn't have the skills to tell me much about her day, all I know is that she sang. In a couple of days the teacher will start sending daily notes home with what they did, she just wanted a couple of days to get into the swing of things before sending them.

(Wanted to show how big her bag is compare to Gracie)

Anyways, I woke up nervous and with a pit in my stomach. On the way home from dropping Jason off at work I had a little crying fest thinking that I wouldn't be able to do it, but I did!

We were ready and waiting outside for the bus early. We passed the time by blowing bubbles and running to the corner to see if the bus was coming. Morgan was so excited for Gracie! It is nice that she is such a wonderful big sister, it helps Gracie learn how to express appropriate emotions for different events.

(Morgan and Ryan waiting and playing with Gracie)

We climbed on the bus with Grace, chatted with the bus driver as the aide strapped Gracie into her seat. Said our goodbyes and off she went. I was good, I didn't follow the bus...but after 15 minutes I rushed to the school to see her get off the bus. By the time I got there, the kids were all off the bus standing at the front doors. The five other kids on the bus were all standing holding on to their little rings that were attached to the rope, but Gracie was standing walking all around trying to find a way into the school. They eventually started to walk to their classroom, they walked around to another door and cut through the school then walked across the back lot to the trailer where their class is. (yes I am concerned about all this walking wearing Gracie out before she even gets to school, I will be talking to the teacher about this, especially since Gracie was stumbling once they got to the back of the school and it was obvious she was tired.)

(Getting strapped in on the bus)

Morgan, Ryan and I ran errands and then rushed back to the school to see Gracie get on the bus to come home---this time I had my camera and managed to snap one pic of her from the car. I was pleased to see that her teacher was caring her and I was able to overhear the teacher ask the bus drivers if they would be able to pull in closer to the trailer, though there doesn't seem to be enough room for the buses, at least the teacher seems aware of the distance (wish the school district would have thought before placing the special ed preschool in a trailer all the way behind the school!)

(The pic from the car)

When Gracie got off the bus, she seemed happy to be home. The moment she got off the bus she begged for water to drink and a sandwich (of which she only ate a bite). She refused to nap, but was exhausted all day long. I'm sure she will be tired as she continues to adjust to the new schedule and routine, but she seems to enjoy it so far and wants to go back tomorrow.

So happy we both survived our first day at preschool!

Freaking out

2011-08-29T21:09:00.000-06:00

This afternoon Jason and I took Gracie to her first ever preschool open house. She was excited to meet her teacher and me, I was and still am freaking out. Gracie will get on the bus at 9:05am and ride for about 20 minutes before getting to school.

I know that this will be a great experience for her and she is going to love it, but I just can't stop worrying. Will they be able to care for her the way that she is accostumed to? Will she feel alone or included? Will she be able to trust the teacher she only met for 10 minutes? And my list of questions goes on and on.

This is such a hard experience. I was telling Jason, that I don't know if I could handle this and he couldn't quite understand where I was coming from. In his mind I should be able to let her go, enjoy some time with Morgan and Ryan, and just relax. But to me it isn't that simple.

Though I do have three children who I love and care for so so much. Gracie is unique in that she has depended soley on me to be her advocate, her teacher, her protector, her nurse, her friend. Other than being in the hospital to have Ryan, Gracie and I have always been together. It's like my identity is wrapped up in Gracie and all that I do to ensure that she is taken care of and has the best quality of life. With her attending school for 3 hours a day, four times a week, by herself without me, I feel lost and like I will be missing a huge part of me for that time. Does that sound weird and psychotic? Its not suppose to, its just hard that I won't be included in this aspect of her care as much as I want to be....

I just needed to get this out there, maybe there are some other mamas out there that feel the same way about their special needs kiddo.

I know we will get through this and in a couple weeks we both will be in love with Gracie attending school, but for now this is a step that I will approach with much hesitation and concern for my baby. I just don't want her to not be ok

Raising Gracie's Star

2011-07-26T21:11:00.000-06:00

Today we were able to complete Gracie's Make-A-Wish experience by going up to The Wishing Place, in Murray. Of the 66 Make-A-Wish chapters in the country, Utah's chapter is one of four that have a special atmosphere for Make-A-Wish kids and their families. The Wishing Place, was designed after taking into consideration input and opinions from Make-A-Wish kids.

When you walk in, if you look up you will see glass stars of all different colors hanging from the ceiling. Each star represents a Wish child and their wish and each star was raised by that wish child. The backyard has a special wishing pond, where the Wish child can get a special token to throw in and make another wish. Then on the second floor there is a special tower with a locked door, each Wish child gets their own key to unlock the door, where inside they get to leave their wish for the Wish Wizzard. Explaining it doesn't give it justice---so lucky for you we took video of Gracie's experience.

Gracie showing offer her star that she decorated. It was kind of funny because she freaked out when she got the marker on her hand.

Morgan and Gracie at the wishing pond

Entering the Wishing Tower.

Family pic in the tower.

Make-A-Wish

2011-07-21T06:00:00.000-06:00

In January of this year we filled out all the paper work for Gracie to get a wish from Make-A-Wish. We debated whether to wait until she was older and could really wish for herself, but we felt that now was the right time. By May we met with Gracie's wish granters Annie and Brian, and in July her wish was granted!!!

Though Gracie would have loved going to Disney World, we decided to wish for a playset. Gracie absolutely loves to swing and what better than her own swing set so she could swing whenever she wants, for how long she wants.

Anyways, a couple weeks ago, Annie emailed me to tell me that the company they were getting the playset from were going to install it on July 8th. I was so excited because, July 8th was the day after Gracie's 3rd birthday. How exciting to have her wish granted for her birthday!

We surprised Gracie with a big party to 'unveil' the playset. We invited all of our family and friends, Annie and Brian brought a cake and balloons and we had an AMAZING time!

Annie and Brian even surprised Gracie with a special birthday present, her very own car!! I have always wanted Gracie to have her own power wheels car so that she could be able to play like others and keep up. Grace absolutley loves the car, we just have to teach her how to push the gas, but once we do, I know there is no stopping her. Now, though, she is perfectly fine just sitting in the car, listening to music.

The Make-A-Wish organization is amazing. I am so grateful that Gracie was given the opportunity to wish and find some hope and joy admist all she has to go through. I love that Gracie can go into the backyard and have fun and not be judged or looked at because of her differences. I hope that one day Jason and I will be in a position to fund another kiddo's wish

Gracie's 3rd Birthday!!

2011-07-10T21:46:00.000-06:00

Thursday was Gracie's 3rd birthday!!! She was so excited to have a birthday party, which we combined with her Make-A-Wish party on Friday (I will post about that later). So Thursday we kept it kind of quiet, since Gracie doesn't eat or have a favorite meal we decided to just take them to the local carnival. Gracie loved it! We disconnected her from her oxygen tank and I took her down the big yellow slide, she is such a thrill seeker.

Turning 3 has been a bittersweet milestone....every birthday Gracie can celebrate is a miracle, but it also means that we had to say goodbye to all of our therapist who have helped Gracie get to where she is today since she aged out of Early intervention. Each therapist has made such an impact in our lives and we can only hope that we will stay in touch with them.

Developmentally Gracie is doing amazingly well and is catching up. Verbally we can understand about 95 % of what she says. Gracie is always singing, it is the cutest thing ever. Her favorite song is 5 little monkeys (I should post a video of her singing it). Gracie is walking now! Granted she isn't doing it consistently, but can take about 15 steps independently. She cruises all the time now and is so much more brave on her feet. All I wanted was for her to be walking by her 3rd birthday and she is!

Health wise Grace is doing great. She hasn't had any major illnesses and seems to be doing ok from a cardiac stand point. We go back to cardiology in September and then we will have a better idea as to how soon her next surgery will be. Gracie tires quickly and gets bluer with more activity, but she is just amazing!

In the fall Gracie will be going to school. It kills me to think of her being any where without me, especially riding the bus to and from school on her own, but I know she will love it. Since she is still so far behind she qualifies for the school district preschool, which means she'll be going 4 times a week.

We love our Gracie so much, she is such a miracle and example to us!

2011-07-09T22:05:00.000-06:00

Yeah!!! I lost access to my blog for several weeks and today I tried to log in and it worked! I have so many things to blog about; the kids, our new house, Gracie's Make-A-Wish, but for now I will leave you with some pictures and a promise that there will be a new post tomorrow!

The girls on the wooden pony at the zoo.

Our beautiful blue eyed boy!

2011-02-17T21:24:00.000-07:00

So I realize that it has been over two months since I have updated the blog and frankly that is just too long!! Though not much has happened I do feel like there is still so much to update. I thought instead of doing one huge post, I would update with three different posts, one for each child. So this post is going to be all about about our little man, Ryan.

Ryan is now 5 months old and is such a sweetie. His smile and laugh just melt our hearts. He absolutely loves his jumper and though there has been several times where he has successfully rolled over from both his back and stomach he still isn't doing it consistently. Ryan can sit up on his own for about a minute before he topples over and loves playing with his sisters.

One of Ryan's favorite people is his older Morgan. Though Ryan is 5 months old the novelty has not run off for Morgan and she cannot leave him alone. Usually Morgan can make Ryan laugh at the drop of a dime, and though there are many times she freaks Ryan out by picking him up and rolling around on the floor with him he still squeals as Morgan plays with him.

Ryan loves when Gracie will come close to him and play, but this happens very rarely because Ryan is teething, hence drooling like crazy, which freaks Grace out.

We love our little man and can't believe how fast he is growing...I wish we could just bottle him up and keep him this little.

Some Videos

2010-12-06T21:02:00.000-07:00

Saturday afternoon I was playing with Ryan and Gracie and was able to get some of Ryan giggling on video. Ignore my awful singing and just allow yourself to melt while you listen to the precious laughs of a little one.

Gracie has come a long way with Ryan and I was able to get her to hold him for a few seconds. I find it hilarious what Gracie does when she is done holding him.

This is what Gracie is doing all the time. I love that she just wants to be up and is realizing more and more what her feet and legs are for.

Our Mr. Man

2010-11-17T21:04:00.000-07:00

Ryan is affectionally known as out little Mr. Man and I can't believe he is two months old, my how time flies! He goes in for his two month check up on Friday, but I am sure he is close to 12lbs! I honestly can't believe how big he is, Gracie has always been small, and Morgan was never a really big baby either...so it must be a boy thing.

Mr. Man is smiling like crazy these days and is trying so hard to "talk." His personality is so mellow and easy going, which is such a blessing to us these days. It is so amazing how much you can grow to love something so tiny in such a short amount of time.

Gracie update

2010-11-04T20:26:00.000-06:00

Gracie being silly and hamming it up.

Oh my finding time to update the blog is next to impossible. I have many post ideas going on inside my head, but just can't find the time to actually sit down and post them. Girls are in bed, Ryan just ate and is asleep so hopefully I can get this update done.

Morgan and Gracie on Halloween--too bad the rain kept Gracie in the house.

Gracie has been up to so much lately that I just want to share how much this little one has been developing and progressing. We go back to Cardiology in December and are anxious to see what the doctor thinks of her. She is weighing in at 23lbs and 12oz, I'm thrilled but it makes carrying her and her oxygen and a newborn so difficult when we have to go out without Jason. I am so happy that I switched her to the blended diet...it has worked miracles in our Gracie.

Grace is talking up a storm these days, though a lot of what she says is hard to understand, she is communicating more with words then by crying. Here is a list of some of her most used phrases:

I sit

Bite peas---I want a bite please

Mo chi---More chip

Bouh----Book

Minnie mou----Minnie Mouse

Ousid-----Outside or Einstein

Mommy

Daddy

Mimi---Morgan

Ninitee----Night Night

Ride----Slide

Neigh neigh----horse

As I type this I realize this list is actually quite long...so these are some of our favorites.

We still have physical therapists coming 4 times a month and will be adding a speech therapist next month. We are still going to motor skills class once a week as well. (The thought of her aging out of the Early Intervention Program in July just freaks me out.) Grace has also started a therapeutic horse riding class called Courage Reins, where she gets to ride a horse for 20 minutes once a week. The idea is that horse riding helps improve confidence, strengthens different muscles, works on sensory issues and so much more. Gracie absolutely loves it!!

This is dark, but I wanted to show her and all the horse.
We are just amazed at how far Gracie has come and what she is doing. She is learning to love to stand and is trying so hard to pull herself up, but she still isn't strong enough, but she'll get there.

Gracie practicing standing on Morgan's scooter. She loves when we push her around and she gets to go for a ride.

Check out these videos of what she is working 0n now, I just know that once she masters it, we are in trouble.

Halloween Songs

2010-10-28T20:00:00.000-06:00

Grandma asked me to post some videos of Morgan singing the Halloween songs she learned in preschool.

Pictures

2010-10-14T21:59:00.000-06:00

Life has officially become hectic and almost impossible to do anything other than nurse Ryan or take care of Grace and Morgan. I promised my sister that I would post some pictures, so that is what this post is...

Our first family pictures.

This was Ryan in his going home outfit. It's amazing how fast he has grown!

Giving Ryan a bath, I thought for sure he would wake up the moment I put him in the tub...nope, he slept through the entire bath.

I love this picture, Morgan is the perfect big sister.

Gracie still isn't too keen on being super close to Ryan, but she actually tolerated "holding" him for this picture.

Morgan has to hold Ryan every day.

This is one of our favorites of our little guy.

Our new addition

2010-09-14T14:26:00.000-06:00

Ryan Michael Gourley born September 13th at 1:44pm. Ryan weighed 7lbs 11oz and 19 in long. He seems to have a mellow personality and is already a champ at nursing. The girls came to meet him yesterday...Morgan is in love and wishes that she could be with him 24/7.

Mom and her kids

Morgan just adores him

Preschool

2010-09-12T21:05:00.000-06:00

I meant to update last week about Morgan's first day of preschool...but I got carried away in all the business of the week.

Morgan was so excited to go to school. She loves making friends, learning, and just socializing with others. She woke up and couldn't contain her anticipation to meet her fellow classmates and teachers; so luckily I had a playdate planned in the morning to distract her.

When I picked her up, one of her teachers turned to me and said, "Morgan did great." I thought to myself, I wasn't worried. Morgan really does thrive on social interaction.

This was her silly face after picking her up.

In the car, enjoying her treat from her teacher.

Gracie's new skill

2010-07-19T21:46:00.000-06:00

It has been a rough week for several reasons....Gracie has had a nasty stomach bug for the last week. But luckily she seems to be doing better, though she still is not consuming her normal amount of calories. Hopefully we will get her back to her norm before she loses all the weight we have worked hard to put on.

Amidst the sickness Gracie learned a new trick. We have been working on pulling to a stand for a long time and though she is not pulling to a stand from the floor---check out this progress.

Photo Shoot

2010-07-11T07:21:00.000-06:00

Yesterday my dear neighbor took Gracie and Morgan's pictures for me. We were going to go to the amphitheater in American Fork, but it was reserved so we ended up doing it in my mother-in-law's neighbor's backyard (which is beautiful).

We did it first thing in the morning since that is when Gracie is her happiest and lighting is usually good. Gracie was great. Very happy and smiley and lasted an hour before she started asking to be done. Morgan was a ham. She would pull some of the funniest faces...and would have rather been playing in the beautiful garden with all of the little statues.

Ginger, thank you so much for taking these amazing pictures. I absolutely love, love, love them!! I think I am obsessed.

Here are some of my favorites---it was too hard to not chose to many. And if any of you need a great photographer check out Ginger's site---www.posiesphoto.blogspot.com

Morgan

Ginger thank you so much. I know I have told you this already, but I absolutely love, love, love these pictures. I think I'm obsessed, I can't stop looking at them, ha ha.

Here are some of my favorites...it was so hard to decided which pictures I wanted to post, so sorry there are so many.

Gracie

Jason doesn't care for this last one, but I love it. I love that you can see her scar--it has made her who she is.

Happy 2nd Birthday Gracie Girl!!!

2010-07-07T21:50:00.000-06:00

These pictures were taken a few minutes apart from each other---Gracie threw up her breakfast and needed a wardrobe change!

Gracie is 2 years old! Yeah! I was a little worried because the last few days Gracie has been a bear and I really wanted today to be a happy day. Fortunately she woke up as happy as could be and was extremely pleasant all day long. Morgan couldn't wait for Gracie to wake up this morning--I think she was more excited for Gracie's birthday than she was for her own last year. I am so grateful Gracie has such a wonderful big sister who loves her so much!!!

Morgan wanted to wear the tiara too.

We didn't do anything major today, we played and sang songs and just had fun until our extended family came over for cake and ice cream. I made Gracie her very own Mickey Mouse cake which she loved and even kissed before we cut it up for all to enjoy.

I love the look on Gracie's face--ewwwe you expect me to put that in my mouth again!

We gave Gracie a water table for her birthday gift to promote standing---but she still won't stand for more than 10 minutes (just too exhausting). I guess that is why she enjoyed the box more than the actually gift.

Gracie we love you so much!! You are an amazing miracle and we are so grateful that we are able to enjoy you and have you here with us. You have taught us so much and still have plenty more to teach us. We can't wait to see how much more you will change in the next year!!!

A post of all Gracie's milestones will come soon---I'm just too tired to write that all now.

It's here!!!

2010-07-02T21:56:00.000-06:00

We got the call that Gracie's Kidwalk finally came in, after waiting over two months. I couldn't wait for the delivery man to bring it and risk not getting it till after the holiday weekend, so the girls and I drove up to SLC to get it this morning.

I was so excited to get it, set it up, and get Gracie in it that I ended up laying her down for her nap later than normal. Gracie wasn't too sure about it and didn't realize that if she moved her legs she would be mobile, but Morgan tried to help her.

After dinner we took her out for a walk and Gracie did fairly well---we just have to help her gain more control of the walker so that it doesn't just spin in circles. Gracie didn't hate it and even wanted to 'explore' while we were out today, so I'm optimistic that she will catch on fast and once her legs get strong enough, there will be no stopping her. Hopefully with time she will last longer than 5 minutes and will get to the point that she just wants to be in the walker all the time.

Cardiology appointmen

2010-06-23T21:13:00.000-06:00

Today we had a cardiology appointment and it was an appointment like no other. You know the feeling of pure joy when you are given great news? Well that is how today's appointment went!!

Yesterday I got a phone call from the cardiology office asking us to come in early for an echo. I was nervous because Gracie has never had a non-sedated echo before (other than the times that she was so sick that she didn't have the energy to move). But to my amazement she did great! She hated that she had to lay flat and couldn't control the probe herself, but found amusement licking the probe and the technician's fingers (glad she used Avagard before starting).

Dr. Su couldn't believe how well Gracie looked and how much more energy and personality she has now as opposed to just a couple of months ago. He was pleased with her weight gain---22lbs 4oz and all of her new skills which she wasn't shy about showing off. But the best news comes with her echo---it looked beautiful!!!

Grace has always had a moderately leaky valve and today there was barely any leakage!! Gracie's heart has a more efficient squeeze than ever before. Dr. Su said not to change anything because we obviously have found a happy ground for Gracie and she is finally thriving. It was so wonderful to see how excited and pleased he was with Gracie.

We are hopeful that when the time comes for the Fontan that her pressures will have come down and she will be a candidate for the surgery. But in the meantime we will just keep plugging along and for the first time we don't have to go back for 6 months!!

New skill

2010-06-22T22:03:00.000-06:00

Look what Gracie can do!! Tonight while I was getting her dressed after her bath she sat up all by herself! She still can't do it while on the floor the "proper" way, but we're making progress.

Strawberry Days

2010-06-17T21:36:00.000-06:00

This week is Strawberry Days for our little city we live in--complete with rodeo, carnival, and a parade this Saturday, so we decided to take the girls to the carnival tonight. It's ridiculous how expensive it is to ride a ride so we didn't stay too long or let the girls ride more than a couple rides, but they had fun! I love how good Morgan was when we told her that there were no more tickets and it was time to go home, she is such a sweetie.

I had to talk the carnie into letting Gracie ride the cars with Morgan, against Jason's opinion, but I'm sure glad I did--Gracie loved it!!

And of course we couldn't leave without riding the 'merry goey around" as Morgan says it.

Morgan rode this flying ride without Gracie--didn't feel good about trying her on this one.

Gracie's update

2010-06-10T21:27:00.000-06:00

Gracie loves to ham it up for the camera!!

I've had every intention of posting an update of Gracie sooner, but the last week has been crazy. I have been sick and I have had my share of days where I have felt way too overwhelmed with everything that instead of posting a negative post, I thought I would just wait till my attitude and perception of things changed.

Now on to little Miss Gracie. I can't believe that Gracie will be 2 years old in just under a month!! It is amazing to me to see how far she has come. Today in motor skills class, she actually let me hold her under her arms and help her walk across the room---a first!!

Gracie is still working on trying to get into sitting on her own, it is just so hard for her. I'm convinced that it is because of her sternal suspension and having her pectoral muscles cut to stretch out her chest enough to close her up after that first open heart surgery--though no doctor seems to agree with me, o'well, they don't know the lasting affects of what they always choose to do, right? (Are there any other heart kiddos who have struggled with getting into sitting for so long?)

Gracie still loves to stand with assistance and will do so for about 15 minutes before she gets tired and needs to sit down. She hates to kneel and pull to stand and absolutely destests working on the stairs, she just puts her head down and pouts, then she fights as we require her to work...it is funny and sad all at once. Poor girl, I wish she didn't have to struggle so much to do what seems so easy for so many kiddos her age.

We're still doing the blended diet (for those of you who don't know what that is, instead of formula I blend real fruits, veggies, grains, and meats into a 'milkshake' then put it in her g-tube) and for the most part Gracie is tolerating it well. Though we are dealing with her puking a lot more, to me it is worth it. Most of the time the reason for the puking episode, is because I pushed the food too fast or I didn't distract her enough while I pushed it. Gracie is gaining weight like a champ, last week she weighed in at 21lbs 15 1/2 oz!!! It is amazing to see how great Gracie is responding to this diet.

Though Gracie still isn't talking much, she is mimicking us so much more and will repeat almost everything we ask her to say. She has picked up so many signs, her favorite is all done. Today she was sitting in her stroller crying, signing all done...it was so cute, everyone around her thought she was waving...nope, she was asking for help, she wanted someone to get her out. Gracie now recognizes her nose, mouth, eyes, and ears and will point to them most of the time. She loves to go through all the farm animals and make their sounds, though the only ones she knows without help are cow and duck.

Gracie has a couple of bad habits that drive us nuts. She LOVES to gag herself and thinks it is hilarious---I wouldn't worry too much about it, but each time she gags herself, her heart rate slows and if she does it too many times in a row...well you all know what can happen. Gracie has also become rather sensitive to other babies and their cries, EVERY time a baby cries she starts crying crocodile tears and won't stop. It makes the days that I watch my 7 month old twin niece and nephew extremely hard...I think she senses that there is change in the future and hence the obnoxious behavior.

Well I guess that is quite an update that perhaps isn't very cohesive...but at least it is done.

Drawings of a toddler

2010-06-03T22:13:00.000-06:00

Morgan has started drawing distinguishable pictures on her doodle board, so in an attempt to be able to show them to her when she is older, I wanted to post them to the blog. I have a lot to say about Gracie and the last little while, but that will have to wait till another day....

Can you tell what this next drawing is? Gracie could!!

Did you guess Mickey Mouse?

2010-05-11T20:34:00.000-06:00

Just wanted to post a couple pictures and a video of Gracie butt scooting--I think it is the cutest thing ever!!!

Gracie update

2010-05-06T21:34:00.000-06:00

Tomorrow Gracie will be 22 months old, I can hardly believe it. Today we took her to get her hair trimmed and I was laughed at when I said I didn't want to cut too much off---because I didn't want her to look too much like a toddler. I know, Gracie is a toddler and becoming more and more of one every day, but she is still just my baby and in a way, regardless of how many more children we have, Gracie will always be my baby.

Anyways, the past two weeks have been filled with changes and major accomplishments for Gracie. We decided that it was time to break Gracie of sleeping in her swing---she really is getting to the point where she is getting too big for it. Those of you who really know Gracie, know that her swing has been her comfort zone. I think she really got attached to it while in the hospital, it was the only place where, no one would bother her and hurt her and given everything she had been through, we figured there could be worse things than sleeping in her swing. Well, apart from two weak moments on my part, Gracie has slept in her crib for naps and the entire night for the past two weeks. Mind you, she isn't sleeping through the night anymore, and we are hating getting up three times a night to comfort her, but, the swing should be put away soon. Yah!

Now for the most exciting news, we switched Gracie to the blended diet and she is thriving on it!! I owe it all to Andrea for giving me the encouragement to do it and answering my questions and for sweet little Owen who restored my hope that perhaps Gracie could catch up and start making progress in her motor skills and overall development.

I'll admit that starting Gracie on this diet, I had high hopes and I'm excited to announce that some of those hopes have already been reached. Everyone who works/knows Gracie can see the difference that has taken place in Gracie in just two short weeks. Her endurance levels have increased, before she could only stand at the couch for 2-3 minutes, now she is standing at the couch for 10 minutes before she gets tired and needs to sit down!! Gracie is also jabbering up a storm and saying new words every day. A week ago Gracie started butt scooting and it is the cutest thing ever--she isn't too fast and most of the time she ends up resorting to rolling because it is faster---but it is a new form of mobility!

Gracie is finally putting weight on at the rate that her cardiologist wanted her to. I was told in December that the goal was to get Gracie to gain 1/2oz a day (that's about how much weight a newborn should be gaining) it never happened and Gracie was stuck. But just in two short weeks she has gained 8oz, 3oz the first week and a whopping 5oz the second week. Gracie is finally over 20lbs! So needless to say I am sold on the blended diet and will continue with it.

I could go on and on about all the positives we have seen in the past two weeks, but I already feel like I am rambling. I will try to post some videos of Gracie butt scooting as soon as I have time to get it on tape.

Relieved

2010-04-27T20:22:00.000-06:00

For the last several months, life has been stressful and perhaps even more stressful than Jason and I actually realized. In January, we found out, unexpectedly that we were pregnant. We hesitated telling others for so many reasons, but perhaps the biggest reason was because we were scared. We were scared that this baby would have a heart defect, like Grace. We were scared because this baby was unplanned and with Grace and where she is at, it is going to be a lot of work on so many levels. And the list goes on and on---

Well, we are pleased to announce that this baby's heart is healthy!!! Well 90% healthy so far, we'll know more next week at our fetal echo. Before the technician even pointed out the baby's heart, I saw 4 chambers!! The baby's septum is perfect, and the aorta looks good. Even though this was just a regular ultrasound in the doctor's office, we spent a good 10 minutes looking at the heart and the blood flow---I think when we finished looking at this little one's heart I finally breathed for the first time in four months.

Jason and I are excited to announce that we will be welcoming a healthy baby boy to our family this September. I'm sure he will bless our lives in ways we can't even imagine now.

Vegas

2010-04-24T14:31:00.000-06:00

As if our trip to California wasn't enough, Jason, the girls and I all headed down to Vegas last Sunday. It was a short trip, we got there Sunday afternoon and came home Wednesday morning, but it was so much fun and believe it or not so relaxing. We did a whole bunch of nothing! We went swimming in the heated pools, played on the play yard, and just hung out in our timeshare and we couldn't have been happier.

We did, however, get to spend some time with my older sister and her family. My sister Cammie, who I adore, decided against a big wedding and reception at home in NY and instead, brought her family out to Vegas for a vacation and to get married there. We were so happy, because the last time we saw Cammie was when she came for Gracie's 2nd surgery (before this past week she has only seen Gracie in the hospital, hooked up to a vent and getting pumped with lots of meds).

Nothing to exciting to report from Vegas, but I do have a couple of cute pictures to share. Enjoy!! A Gracie update should follow in a couple of days.

These videos are of Gracie splashing around and Morgan thought it would be fun to run in circles--Gracie got a kick out of it.

California Vacation---its a long one

2010-04-13T13:54:00.000-06:00

Jason and I feel like we have just been on a once in a life-time trip. We are so grateful and appreciative to his parents who not only accompanied us on this trip, but made the whole trip possible. Though I'm sure there were many times they asked themselves why they signed up to go with us, we loved there company and the time we spent together, despite the craziness of the trip.

Leaving home at 5am

Outside the parks our 1st day.

Inside of the Bug's Life auditorium.

Morgan LOVED the entire trip and has since told me that she wants to move to California. She absolutely loved being with grandma and grandpa 24/7 and loved having her Aunt Michelle and cousin Cade to play with. At Disneyland it took Morgan quite some time to catch on to how fun it could be. She wouldn't go near any characters without freaking out and she was hesitant at first to go on any rides...But she soon fell in love with the Dumbo ride and the Tea Cups, as we were leaving she proclaimed loudly and firmly, that she wasn't ready to leave the park.

Morgan's favorite part of Sea World was of course Shamu. It was so fun watching her clap her hand and shout, "Go Shamu, go Shamu!" Though dad thought that the Sesame Street show was lame, Morgan said she loved it...I'll have to form my opinion the next time we go.

Taking a break.

Now for Gracie...let me begin by saying she is a child that HAS to have consistency and familiarity, without it she falls apart. During the trip she was crankier than normal perhaps because we were constantly on the go and she only had a little time to just chill at the hotel or Michelle's house. Monday we went to California Adventures and apart from riding a couple of the rides in The Bug's Life area...she wasn't too impressed and actually fell asleep in the stroller (something she never does). Since Monday was supposed to be our easy/quiet day we planned to leave as soon as Gracie woke up, but during her nap we took the other kids to see Playhouse live...well we knew we had to take Gracie to it before we left...it was Mickey Mouse and the gang. We're so glad that we did take her back, she LOVED it. Gracie would dance and bounce up and down as she watched and at the end, she just kept glancing back at the stage and then at us as if to say..."what? that's it?"

Tuesday was our big day at Disneyland and it was a crazy day. We found out later that there were about 65,000 people at the park that day. We were grateful that we had a disability access pass for Gracie...we were able to do more than we would have been able to do without it and it helped her not lose to much stamina and endurance waiting in hour long lines.

First thing on the agenda at Disneyland that day was to head to Mickey's house...though Gracie met him at California Adventures the day before...she was extremely tired and it didn't go over so well. But at Mickey's house she actually did great until Mickey tried to kiss her hand....I think if Mickey talked he would have been less intimidating. Overall we think Gracie enjoyed Disneyland and all of the rides and attractions...she loved Its a Small World, she just jabbered and waved to every doll there. During the Pirates of the Caribbean ride she kept signing all done, she wasn't a big fan of the darker rides, she even freaked out on the Winnie the Pooh ride.

Our days in San Diego were limited...I accidentally forgot the charger for Gracie's feeding pump. We tried a gavage feeding, but Gracie didn't tolerate it. After calling almost every home health agency in San Diego and the surrounding areas to see if they could help, we decided that we would need to drive back up to Rancho Cucamunga that night...So Gracie and I stayed at the hotel while the others went back to Sea World for a few more hours---I got to push 10ccs of formula into her g-tube, every 15 minutes to prevent another melt down and vomiting experience. We did get to go to Sea World in the morning and catch the Shamu show, Grace was vaguely interested, but other than that she didn't seem to like being there. I think it was too hot. We tried her on some of the rides there, but after a bad experience on the flying Elmo's, I gave up. (Let's just say that Sea World isn't very disabled friendly...the workers weren't going to let Gracie ride the ride because she couldn't walk...)

That sums up our trip in a nut shell, next time I think we will just want to spend time at Disneyland (maybe 4 days) and not be going all the time. Plus it will help that Gracie will be older than. It was a shock to her, I think Gracie had a headache from being at a lower elevation and still on as much oxygen as she is on here (her docs didn't want to tritrate based on sats, since we are trying to control the pressures), her g-tube got pulled out twice, and she isn't use to as much sun as she was exposed to during this trip (though she has a nice little tan on her legs now).

I want one!!!

2010-03-21T21:35:00.000-06:00

Last week I got a call from our Physical Therapist asking me if I wanted to bring Gracie down to the center to try out a new walker that was being demoed. This walker is relatively new on the market and very much unlike any other walker on the market. Gracie's therapist--Becca said that she was really anxious to see kids in it, because it is a good idea, but sometimes with these devices they look good on paper, but you get the kid in it and it doesn't work.

Anyways...the walker is called the KidWalk, you could learn more about it here http://www.primeengineering.com/pages/products/kidWalk.html and it was AMAZING to see Gracie in it. At first she hated it, but once we took off the upper chest harness, and moved her to the linoleum, she did great. Gracie moved back wards with purpose and ease and even tried to move forward. When I pushed the walker she eventually learned what her feet must do and tried to walk instead of just raising her feet.

We will be trying this walker out some more in the next few weeks, but I'm sold! It's a hands free walker and allows kids to move on all terrains and explore their surroundings just like non-disabled kids. We are now in the process of getting a prescription and writing the letters to insurance to try to get approved for one of these walkers. Our PT thinks we have a chance for two major reasons, it's likely that Gracie won't need any other major equipment like wheelchairs or the like and she is 21 months and her only mobility is rolling around on the floor. Wish us luck that we will get one of these amazing walkers soon. If there is anyone out there that has gone through the process and has some pointers, I would love to hear your input.

Living Through their eyes

2010-03-16T21:30:00.000-06:00

Lately I have been lost in thoughts...thoughts about the past, the present, and the future. Thoughts of where my life has been, where I'm at today, and where my life will be years down the road. Many of my thoughts centered around Gracie and the choices and decisions Jason and I have made in her life. We asked Grace to go through so much just to stay here on earth, and at times I have wondered if we pushed her too much. But seeing the joy and excitement for life in her eyes assures me that the fight we saw in her so many times as she laid helpless and what seemed to be at the end of her rope was real. Gracie fought through more than what any child should go through to experience life's simple and pure pleasures. Though I have seen that zest for life many times in her life, I have been able to feel it more within the last few days.

Grandma and the girls at Disney on Ice

Through Hope Kids we were able to take Gracie and Morgan to Disney On Ice: World of Fantasy, to my surprise Mickey and Minnie were there which made Gracie's day. I know I have said this before, but Gracie absolutely is in love with Mickey and to see the joy and excitement in her eyes as she watched him helped me remember what life is really about.

Gracie's 1st time on the merry go 'round

Morgan always is afraid at first but then remembers she loves it.

Then today we took advantage of the beautiful Spring like weather and took the girls to the zoo. It was wonderful to walk around and see the interest in Gracie's eyes as she watched the animals roam around in their little habitats. We decided to take her on the carousel for the first time and she loved it. Oh, how I love to watch this little one enjoy her time here on Earth!! If only I could start to emulate that more in my life.

Morgan trying her best to keep Gracie from falling off.

if you listen carefully, you can hear Gracie answer yeah.

Videos

2010-03-02T19:59:00.000-07:00

Michelle these are for you and Cade, since you have been asking for them. Nothing to special, but I still think they are cute. Morgan wanted to share her scripture from Sharing time---she knows it but needs help when she is asked to 'perform'.

2010-03-01T21:44:00.000-07:00

Gracie and her trial off oxygen.

the girls with our friends--the Tavernaris from Brazil

Life has been so crazy for us, hence the lack of posts. We are all doing well and looking forward to some warmer weather and some very fun family trips in April. The first week of April we will be traveling to Southern California, we are going to both Disneyland (thanks to the Give a day of service, get a day at Disney) then we'll be heading down to Sea World in San Diego. We are so excited to finally travel as a family and make some great memories with our girls.

Morgan is great. She is at the inquisitive stage, everyday we get asked thousands of questions. Why do we have bones? Why does Jesus live in Heaven? Why do we have a belly button? Why are you doing that? etc. But the majority of her questions lately have focused around Heaven and who gets to go there, when do we get to be there, etc. Perhaps the most tender moment for me was when Morgan looked at me and said, but mom I don't want to die and go to Heaven. Silently praying, I told her she didn't have to worry about that, she still had a long time here on Earth. Then she said, I don't want Gracie to go to Heaven soon either....heart wrenching....what do you say to that?

Though there are times where all we want to do is tape Morgan's mouth shut, oh how we love her voice, her sweet loving nature and the amount of love and adoration she has for life.

Gracie is doing wonderfully well. She is jabbering all the time and is communicating in her own ways. She screams when she wants something and when she has done something that she is proud of or wanted to do she shakes her head yes in satisfaction. Gracie is now blowing kisses and waving and saying bye bye.

Gracie has decided that she doesn't need oxygen anymore and frankly we are at our wits end on trying to keep it on her face. We have tried everything apart from super gluing it to her face. After she pulled the oxygen off completely on Sunday, I hooked her up to the pulse oximeter to see how she would do on room air. I seriously was considering just keeping her off of it during the day, but I can't make that decision without guidance from her cardiologist. Especially since her sats are borderline acceptable, but who knows maybe her doctors will think differently, we have an appointment at the end of March.

I have videos I want to post, they just won't upload tonight. I'll try again tomorrow.

Mostly Just Pictures

2010-01-21T20:38:00.000-07:00

Morgan on her first day in Primary.

Things have been crazy for us lately, but nothing too noteworthy. We tried Gracie on Viagra again and she had another negative reaction, so we are still discussing with her cardiologist what the new plan may be.

Gracie has been putting more and more weight in her legs this week and will even stand with assistance for up to five minutes!! Today I got the idea to stand her on the bathroom counter in front of the mirror, and she absolutely loved it. She thought it was so fun to give herself kisses and raspberries. I couldn't resist taking pictures...there not the best, but I think they are adorable.

Happy 18 months Gracie!!!

2010-01-07T20:25:00.000-07:00

Today was Gracie's 18 month birthday. I can't believe she is 18 months old, this is such a big and miraculous milestone for her. Though in many ways she is still much like an infant, she is very much like a toddler in other ways.

Grace is truly my inspiration and hope for the future. I hope to be as strong and determined as she is in all that I do. I love you baby!!

The following is just a list of things Gracie is doing now that I want to remember.

Physically

--rolls around nonstop, tangling herself in her oxygen

--she's an inch worm, while on her belly she stretches out and uses her feet to push herself the extra 5 inches she needs to get the book or toy she wants

--when in her exersaucer or walker, she will stand straight up and put weight in her legs, she even lets us help her stand up straight.

--she claps all the time, especially when she has done something that she knows is an accomplishment

--while in the tub she thinks it is hilarious to splash the water with her feet. Gracie literally gets us so wet, you'd think we got into the tub.

Verbally

--Gracie says dada, nana, mama

--when we sing Old McDonald Gracie quacks through the entire song

--when she can't get to what she wants, she screams until she either finally reaches the desired object or I give in and give it to her

--while eating, Gracie has this guttural sound that she likes to do

--her laugh is still quite soft and is a rarity to hear

--she squeals in delight, when she gets to watch Mickey Mouse Clubhouse

Cognitively

--Gracie understands when we tell her to put her oxygen back in her nose. And will even get a mischievous look in her eyes and proceed to pull it out again

--when asked if she wants to watch Mickey she shakes her head yes

--she knows how to maneuver her body to get over obstacles in her way

--she now talks to baby dolls

Favorites

--Mickey Mouse Clubhouse

--Singing

--playing the dropping game

--playing peek-a-boo

--books

--mama

--being rocked to sleep

--playing with your mouth while you rock her

--her swing

--riding in shopping carts

--being outside

--sucking on purple onions, broccoli, and graham crackers

Stats

--17 lbs 1 oz

--30 inches long

--size 3 shoe

--78-81 sats

Medically

--heart is doing ok, less decreased function

--no scoliosis

--may need eye surgery, we're playing the waiting game

--arterial pressures in her lungs are borderline high, we're working on lowering them

--currently on 7 meds, plus ear drops for an ear infection

--1/2 liter of oxygen continuously

Fun in the Snow

2010-01-03T14:47:00.000-07:00

Since Wednesday Gracie has been sick, the problem is I don't know if she really is sick or is reacting to her new medication. After two months, insurance finally agreed to pay for Gracie's Viagra--because of how it is marketed for ED, those that need it for the reason why it was developed have to jump through so many hoops, providing complete medical histories to prove it is a necessity. Anyways, the way Gracie is behaving and the symptoms she has remind me of how she was when she came home from the hospital for the first time. She is throwing up after every feed, has diarrhea, and has a terrible wet cough. Her eyelids are red and swollen, she isn't sleeping, and she is so pale. Luckily though her sats haven't changed much, she is on more oxygen throughout the day but not much more.

I called both the pediatrician and cardiology yesterday, and was told the normal, we don't know if these are symptoms of the drug, they haven't heard of them before, but it's not impossible that they aren't. We were advised to ride it out a bit and see how she is doing mid-week. In the meantime we are giving her some over the counter drugs to help mange her symptoms so we all can sleep.

Jason stayed home with Gracie New Year's day so that I could take Morgan out and play in the snow. We went sledding and even built Morgan's first real snowman. We had so much fun, but we did wish that Caden, Morgan's cousin was still in town to play with us. We know we would have had even more fun.

I got several trips down the hill on tape, but I think this one is my favorite. I love Morgan's laugh.

This is Sam the Snowman. Morgan called grandma to see if it was ok for him to stay in her front yard and even called everyday to see how Sam was doing. Sadly Sam was knocked over by someone or something last night and is no more.

Christmas 2009

2009-12-30T13:09:00.000-07:00

The girls in their Christmas dresses.

We wore our matching pajamas to Grandma's on Christmas Eve.

Our Christmas was just wonderful this year. It was so nice to have Gracie be strong, healthy, and happy this year. Plus she was actually into the excitement of opening presents and being around family, even though she could care less about the presents and just wanted to play with the paper and boxes.

Christmas eve we went up to Jason's parents' house for dinner, games, and a visit from Santa himself! Out of the six grandchildren there, four of them were so frightened by Santa that all they did was scream and cry. The other two, are still too young to really know what was going on. Poor Santa---I hope his feelings weren't hurt.

All the individual families got pictures with Santa. Any guesses on who Santa was?

Grandma sat in for Emily, since she had do work.

We spent Christmas morning at home. I hardly slept, I was too excited to see Morgan's excitement, I love that she can get into the joy, happiness, and magic of the season. In the morning we made Morgan wait for Gracie to wake up before allowing her to go down and see if Santa came. After she asked to go peak for the third time, we decided to wake Grace up and go down. Jason's parents and brother came down to see the girls open gifts, so we were able to get Morgan's reaction on tape. I absolutely love her dance, I thought of editing me out (so just pretend you can't see me), but then you wouldn't see Grace---she got a Mickey Mouse doll in her stocking and if you listen you could hear her excitement.

Traditions

2009-12-18T22:00:00.000-07:00

Taking a break from helping with sugar cookies, to dance.

Gracie with a sugar cookie---she liked the frosting!!!

I am so excited that Morgan is old enough now to really get excited about Christmas and actually have fun with some traditions that I am hoping to form. This week we have been busy doing all sorts of fun activites. We made graham cracker houses, snowflakes, and even started making our christmas cookies.

Tonight we headed down to Thanksgiving Point to drive through the holiday light show there, its about a 10 minute drive. We have gone every year since Morgan was born and this year she enjoyed it so much more. We pulled both of the girls out of their carseats and had them on our laps during the drive, both of them squealed in delight at different times, oh it was so much fun to see them enjoy this tradition.

Finally settled in

2009-12-11T21:44:00.000-07:00

Gracie's surgery went well, to quote Dr. Pohl, "it went amazingly smooth, I was surprised how easy it was!" I'm glad Grace was able to do something well, :)

We got up to the floor around 4:30pm and Gracie was miserable. With getting acquainted with the nurse and all that follows (ordering formula, medicine, and adding to doctor's orders) Gracie didn't get to rest until 6:30pm. She fell asleep in my arms, slept 40 minutes and then woke up screaming and was inconsolable for the next 45 minutes (the nurse got sidetracked and forgot about Gracie's tylenol, ugh!) We gave her a nice hefty dose of nubain and within 20 minutes she was calm, relaxed and just playing. We then gave her her 8pm meds, along with some loratab and benedryl, we are still waiting to actually feed her, they will start with some pedialyte at 10pm and if she tolerates that we will start a continous drip around 12am (poor thing hasn't had any forumula since 12am today). Provided she does well, they'll watch her till tomorrow afternoon and we should be home by 5pm, depending on the weather.

Here's a picture of my tired little baby (taken because Jay couldn't make it up and wanted to see her)....hopefully she will sleep well

G-Tube surgery

2009-12-11T15:39:00.000-07:00

Here I am yet again...the same day surgery waiting room. Gracie's surgery was scheduled at 2:30pm, but she wasn't taken back till about 3:15pm. It should be a rather short procedure, under an hour. It was interesting today was the first time that Grace has ever freaked out with nurses. During check-in anytime the nurse touched her to assess her she literally screamed at the top of her lungs, I think it is a combination of getting her RSV shot yesterday as well as recognizing the paper that is always on the tables at doctor's offices. Regardless, as soon as we were in the waiting area she perked up and played and laughed the entire wait. There were no tears as I left her at the operating doors...I kind of felt guilty because she has no idea what is happening, and I know she is going to be miserable afterwards. I just have to keep telling myself that this is for both mine and her benefit and soon we will both love it.

I'm so ready, I feel like every time I had to replace her NG I was just torchering her. Earlier this week I had to replace her tube because it was stretched out and leaking all over, as I did it, I thought to myself how happy I was that this would be the last time I would have to fight her, pin her down and just make her so mad. After I was done, I decided to save the lubricant tube---just in case.

Well not 30 minutes later, Gracie started fussing, yep she pulled out the silly tube. As I had to place the NG again she just looked at me with crocodite tears rolling down her cheeks as if to say will you just leave me alone. Oh how thrilled I am to not have to place this tube ever again!!

They should be calling me soon, so I'll update later, since we will be staying the night.

What's been going on?

2009-12-06T19:40:00.000-07:00

We are here and have been rather busy this last month. We have been busy with several doctor's appointments, PT visits, and trying to just keep our heads above water. With all things considered we are all doing well. Jason is super busy with the Post Office these days, its hopeful that there are still people out there who are using the US Postal Services, regardless of their bad rep.

Morgan is growing so fast! This holiday season is so fun, she has such excitement and anticipation. She has started coming up with some of the most interesting things and stories, I absolutely love it. Lately she has been talking about how she has babies in her tummy---it's because her aunt just had twins and now she wants to be just like her. Morgan actually got to go and see the twins for the first time yesterday and held both of the babies at once, Morgan literally couldn't stop smiling.

I wish I had some good pictures of Morgan, but she is at that age where she is goofy everytime we pull out the camera.

Gracie is doing really well, though we didn't get the news we had hoped for after her cath, I really think that it still helped her. It seems as if Gracie has begun to excel in areas that she hasn't before, mostly physically. At 16 months Grace is finally sitting up on her own and for the most part enjoying it. She doesn't know how to get in to the sitting position, or really out of it. When she has had enough she just starts screaming until we lay her down. Gracie is rolling all over the place and actually is doing some back scooting and tummy scooting. She isn't doing the army crawl, she is still too weak in her arms to drag her weight. I'm in the process of trying to make a device similar to a "Johnny Jumper" that puts Grace on all fours, allowing her to bounce around and allowing me to get down with her and play with her face to face while she is in that position.

We found out Gracie does not have scoliosis!!!! We also found out that her lung pressures are borderline, meaning if we don't get them lowered she will possibly not be a candidate for the third open heart surgery---fontan. But other than her pressures, from a cardiac stand point she is doing ok and now she just has to gain weight. We hope that by getting her the G-tube she will start gaining weight. Her surgery is Friday, and hopefully there will be no complications and we will be home Saturday. Since Gracie is just getting the g- tube and not a Nissen, the procedure is actually quite simple.

And as for me, I'm doing ok. I feel busy and overwhelmed, but that is nothing new. I'm grateful that I have Jason, though we are facing so many trials that cause us to wonder when will we ever get a break, having him to remind me of what really matters and how despite everything, we are loved by a Heavenly Father whose Plan is far more than just the normal day to day.

Update

2009-11-10T20:14:00.000-07:00

Yesterday we got another x-ray of Gracie's lungs and the haziness has cleared up, yeah!!! So we have backed up on how many doses of diuretics she receives and hopefully she will be ok. Speaking with Gracie's cardiologist, he now wants to do another echo on Monday at our appointment to see what is going on and hopefully rule out any cardiac issues that may be affecting her lungs and ability to oxygenate.

We also met with GI yesterday and good news---Gracie seems to qualify for a G-tube. I'm thrilled, I am so tired of the NG tube. I'm tired of replacing it every week because the end won't stay shut after being used to push meds and feeds through. I'm tired of Gracie pulling it out because she gets frustrated that it is always there. And I won't have to feel like I'm torturing her every time I have to place the tube and she screams and holds her breath, then looks at me with her big beautiful eyes with such a look of hurt and betrayal in them.

I hoping that with the G-tube Grace will hopefully start gaining weight and even start swallowing some solid food. She loves having the food in her mouth, but anytime it gets near the back of her mouth she gags it up.

We don't have an appointment yet, the GI doctor said that they are backed up three to four weeks, so we are looking at December. I really don't care as long as we get it done this year, since we have reached our deductible.

Busy day

2009-11-07T21:33:00.000-07:00

Grace and I had the pleasure of being at the doctor's office and hospital for three hours today and we get to go back tomorrow and Monday! As you know from the previous post, Gracie went to the doctors on Monday, she received 4 immunizations, plus the seasonal flu shot. Monday night she was miserable and had a fever as high as 103.4, I chalked it all up to the immunizations and didn't worry too much. Grace has always responded negatively to her immunizations I think that is another reason she isn't up to date on them.

Anyways she seemed to improve some through the week but on Thursday night her high fever returned along with extreme crankiness and a worsening cough. I called the peds office Friday morning and because Grace didn't have any other symptoms, was told to wait it out till next week and if she still had fevers to bring her in.

Last night in addition to the high fever, Gracie's oxygen need increased from 1/2 liter to 1 liter (weren't wee suppose to be trying to go the other direction?) Throughout the night my mind wandered as I tried to diagnoise Grace because I am not buying a bad reaction to immunizations anymore. My possible diagnoises--1. Swine flu---but she didn't really have all the symptoms associated with this. 2. Blood infection--Gracie has been known to develop infections after surgical procedures, maybe she developed one after her cath two weeks ago? Or 3. Excess fluid in her lungs, resulting in an increase in heart failure.

After three blood tests, a swine flu suction test, and an x-ray we are leaning more to number 3. Gracie gained a little over a pound in 4 days--too much too fast. Plus her x-ray was really hazy. We are still waiting for all the lab results, but both the pediatrician and I think the problem is the fluid in her lungs. So, we have increased Grace's bumex dosages to 4 times a day and added diuril once a day. Also as a precaution we gave her a shot of rosephin today and she'll get another shot tomorrow.

We are hoping that the labs all come back fine, its promising because her white blood count is good. We will get another x-ray on Monday and head back to peds office, if things look great or at least improved we will continue our course and head up to Riverton for our much anticipated GI appointment. If the x-ray shows little to no improvement we will be heading up to Primary's to do an echo to see what her little heart is doing.

2009-11-02T17:40:00.000-07:00

Do you ever have those days when you don't know if you should cry, scream, or just throw your hands up in the air and want to give up? I feel like I have felt that way for weeks now and to be perfectly honest it is so overwhelmingly difficult.

Gracie went in for a check-up with her pediatrician. It wasn't a well-child check, he just wanted to see her again to assess how she was doing and get to know her better since we just started seeing him. I have been thinking that there is something wrong with Grace's back and that is why she absolutely hates to sit up, when she sits, she screams and cries as if she is in pain. In the past we thought maybe she had a touch of scoliosis, but everyone told me that there wasn't much that could be done about it so lets not worry about it now. I asked the pediatrician to look at her back and after looking at her back and her curled toes, he wants us to go to an orthopedic specialist to see what is going on and also get a complete scoliosis survey done.

When he looked at her eyes he noticed that she went cross-eyed a bit and asked me if she ever had her eyes checked. I told him that I thought about it because she has struggled with cross-eyedness before, but it seemed to be getting better so I didn't worry about it. He wants us to go to an eye doctorand have her eyes checked because if this goes untreated if there is a problem, she could develop permanent blindness in one eye.

The doctor than said that he wanted me to consider having genetic testing done to see if there is anything else abnormal on her chromosomes to watch for. He just feels that though it won't change much, at least it will give us a better picture of Grace.

I'm grateful for this direction because yes I want to address things to give Grace the best possible care and scenario, but how much more can there be? She has had mild hearing loss, heart problems, lung problems, so many complications from surgeries, and now all of this, it just doesn't feel right. I try not to complain and vent too much about where Gracie is and all that she has to deal with---oxygen, feeding tubes, delayed development, poor growth---because I know so many other children that seem to have it worse than her, more life threatening conditions, but come on already, where is Gracie's break? When is it her turn to be able to excel and be a "normal" kid?

In posting this I don't want special treatment, I just needed to get this out and it is more cathartic to do so this way. I know that Grace is doing amazingly well for Grace and where she has been. I'm grateful for the little accomplishments she makes daily, I just love her and worry about her and if I can give her all that she needs to succeed in this life. Can I fulfill her medical needs and also help her have some resemblance of a normal childhood? Amidst all that is going on with her, will I be able to help her see how marvelous she is and how despite her medical conditions she isn't any less important, any less needed, any less capable of living a fulfilling and worthwhile life?

Halloween

2009-11-01T20:27:00.000-07:00

Halloween has always been Jason's thing, but this year he had a cold, so he got to stay home while I took Morgan out. It was so much fun, Morgan loved going door to door and after each house would say, "just one more house!" The first few houses she didn't really know what to do, she said trick or treat and after she was given her treat, she thought she needed to give a treat back, so she pulled out a sucker and handed it to the woman at the door---it was the cutest thing ever. However, when the woman refused the sucker, Morgan realized that she didn't have to give anything away, and became even more excited to go to the next house. When her bucket began to get full, she stopped and shouted with glee, "Look, its filled to the top!"

It was late and I didn't want to expose Grace to so many people so she stayed home, in fact she had to get ready for bed way earlier because our cardiologist sent us a holter to monitor Gracie's heart for 24 hours. But that is another post...

Grace did however get dressed up earlier in the day as a little cow. She was the cutest little cow ever.

Cath in review

2009-10-24T20:42:00.000-06:00

Finally, the house is quite, girls are in bed and I can breathe and regroup some after yesterday and today.

So here's what happened...Gracie was in the cath lab for just under seven hours and came out extubated with 8 more coils!! (She now has 25 coils in total, you should see her x-rays the upper right lung is almost impossible to see because that is where the majority of the coils are!) Dr. Day was concerned with bleeding around her bladder because he had to go through a higher vein to place some of the coils in the correct spots, so he wanted to watch her until at least 8pm to make sure she was ok.

The good news is that they didn't find anything too alarming. They debated placing a stint in one of her pulmonary arteries, but decided to wait and see how she does. The pressures in her lungs are rather high, not too high, but higher than they like, so because of that we have added another medicine to her regimen, sildenafil or more commonly known as viagra. It helps relax the lungs and surrounding veins and arteries, thus helping with the pressures.

They also found a plural effusion, it is small and can only be seen using ultrasound, but it is there. So instead of decreasing her diuretics, we have gone back to bumex 3 times a day, aldactone 2 times a day and have needed to add sodium chloride back in at 4 times a day. Which also means more blood draws to check electrolytes.

When Gracie's cardiologist, Dr. Jou came by to see how she was doing I asked him if there was still a chance of possibly coming off of the oxygen, maybe in a month after she has acclimated to her new hardware and he laughed at me! Now Dr. Jou and I have that kind of relationship so don't be alarmed that he laughed in my face, its just that we know Gracie and nothing is ever easy with her. So in addition to not getting off the oxygen any time soon, the doctors also want Gracie's oxygen increased from 1/4 of a liter to 1/2 liter---all this is in an attempt to keep her pressures down in her lungs.

Needless to say things didn't happen the way that I had hoped they would after the cath but it could be worse. I'm having a hard time realizing that at least for the next few years Gracie will have to live with oxygen 24/7 and I know that there are many heart kiddos in similar or worse places, but it just makes it hard.

6 hours and counting

2009-10-23T13:47:00.000-06:00

Gracie is still in the cath lab, it has been over 6 hours and the only update I received was two hours ago---things are going great, there are just A LOT of collaterals to coil, but Gracie is doing great. I'm ready to be on the recovery side and work toward getting her home, I think the longer she is in the lab, the chances of them wanting to keep her over night increase. Time will tell.

Meantime, please pray for our little heart buddy Owen. He is on the verge of being place on the transplant list and his family just found out that it could be sooner than later. Owen needs to gain weight, hopefully by gaining weight he can wait for his new heart outside of the hospital for a while. Also please pray that his momma, Andrea will find a hotel to stay in. They live in Arizona and have to travel to California for Owen's cardiac check-up, they weren't planning on staying too long this trip and now can't get a reservation anywhere.

Waiting

2009-10-23T09:15:00.000-06:00

Gracie was the first case this morning so we have been here at the hospital since 6am. Grace has been as happy as can be, just smiling and trying to have fun---but I'm a mean mom and wouldn't put her down to play with all the germie toys!

Its always nice to come back "home" and see so many of our friends, they love to see how Grace has changed and gotten so much more mature. When I ran into people without Gracie in my arms they all stopped to make sure Grace was ok and find out why she is here. A hospital is never a place we like to be at, but knowing that there are so many here that love and care about Grace makes it easier.

I handed Gracie over to the wonderful cath lab nurses at 7:40am, though Grace didn't cry, I could see the apprehension in her eyes. No matter how many times I have had to hand her over it never becomes easy. I've been waiting for almost two hours without an update and have those sick, nerve racking butterflies in my stomach, oh how I hate that feeling.

Dr. Day said that they were planning on 4 hours and that they would have to enter through both Gracie's neck and groin. If things run smoothly and there are no complications we could be home later today! I'm hoping and praying for that, I hear coughs, sneezes, and people sniffling and I just cringe.

Cath lab here we come again

2009-10-20T20:41:00.000-06:00

Remember how we were trying to wean Gracie off of her diuretics and how she tolerated going from three doses a day to two? She did amazing with that wean, how foolish we were to think she would tolerate going from two doses a day to only once a day. Within hours she developed that oh so familiar cough and within two days she went from 1/4 liter oxygen to 1 1/2 liters. After two days I put her back to the two doses a day and was even tempted to give her an extra dose of diuril, it took her 5 days to get back to her norm. I called cardiology on Friday and yesterday, Dr. Jou called to tell me that someone will be calling me from the cath lab to get Gracie in on Friday. I guess that is what you get when you can use frequent "flyer miles" :)

Dr. Jou and Dr. Su both think that Gracie has more collaterals that are keeping her from coming down on her diuretics (currently she is on 4ml's of bumex twice a day and .6ml of aldactone once a day, that's a lot for a barely 15lb baby!) Maybe this time around she will be able to come off of oxygen completely, even if it is only during the day. I have lofty hopes that this will be the case and then if she qualifies for a G-tube, maybe will actually get to have Gracie's face tube and tape free for the first time ever!

All about Morgan

2009-10-19T21:04:00.000-06:00

Yesterday Morgan officially turned 3 years old, leaving me to ponder how wonderful our life has been to have her in our lives. We got pregnant with Morgan only 2 months after Jason and I were married, both of us felt we needed to start a family soon after we were married and we were blessed to do so so quickly.

I always knew my first child would be a daughter, I knew that becoming a mother to a daughter first would bring so much healing. Being a mother to Morgan has been a joy, in all sense of the word, Morgan is amazing!!

I love the way Morgan loves. I love the way she adores Grace and just can't get enough cuddles in with her---I am always telling her that she needs to stop hugging Grace or she needs to let go of her hand because Grace doesn't want to be cuddled anymore. I love how talkative she is, even if there are times that I beg her to find a quiet activity to give my ears a rest. I love how Morgan is a gift and a joy to all that come in contact with her, she loves friends and once she meets them, she can't stop talking about them and using their names for the names of her beloved babies.

Basically I could go on and on about all the things I love about my "little baby" but I won't. We are so blessed to have Morgan in our lives, through all the heartache our extended family has been through Morgan has been what has kept us happy and full of hope for brighter, more beautiful days. We love you Morgan!!!

So the girls aren't allowed to go to church any more right now as we are trying to stay healthy and away from all the germs. After our own little nursery lesson, we decided to play with one of Morgan's new birthday toys. We like this 'doll' a lot more than the one that came in the set.

Birthday Party

2009-10-13T22:23:00.000-06:00

I cannot believe that my little baby, will be 3 years old on Sunday!! Oh, how fast the time goes by! We celebrated Morgan's birthday today with a big family party at our home. Morgan woke up so excited, especially because her cousin Cade flew in today and was going to be at her party.

We had Morgan's favorite meal--chicken nuggets (homemade) and fries, along with a yummy fruit salad, steamed green beans, and baby carrots. Then we opened up gifts and sang, and within minutes the birthday cake I literally slaved over for three hours was devoured. Morgan wanted a chocolate Minnie Mouse cake and if you don't mind, I'm going to toot my own horn, the cake came out wonderfully--especially for not having a mold or anything!!!

I love this face!

I'll post more about my soon to be three year old and how much I love her and all her wonderful traits and cuteness, but for now here's some pictures from the day.

Trying to get a picture with all of the cousins.

Is it bedtime yet?

15 Months

2009-10-09T21:08:00.000-06:00

I can't believe that Gracie is already 15 months old, she seems so much younger than that! I am so grateful for all of the blessings and miracles that we have seen in the last 15 months of Gracie's life---its amazing how much Grace has gone through and overcome. I hope and pray that she will continue to be strong and determined as she continues through her journey here.

Anyways we went in for Grace's 15 month check-up, I finally switched her over to a new doctor, a pediatrician as opposed to our family doctor--this may sound funny but it was extremely hard to make the switch. I just love our family doctor, Shelly Savage, and how she has been with us from the beginning, other than Jason and a few family members, it was her 'shoulder' that I cried on upon finding out about Gracie's condition in utero and dealing with the fears and anxieties for the 4 remaining months of my pregnancy. I felt it was time to switch Gracie to a pediatrician because cardiology isn't following her as closely anymore.

We love the new doctor, he actually was Jason's when he was a baby and child. He spent an hour with us today learning about Grace and all of her surgeries, complications, and just plain uniqueness.

Gracie is doing well, has made some progress in weight gain, but nothing to write home about. Grace now weights 15 lbs. 8 oz., and is almost 29 inches long. So we have finally scheduled a G-tube consult for next month--we're hoping by then we will have her off more of her diuretics, though that isn't going too well right now.

Overall, Grace is doing amazingly well. She still hates sitting up, but can do it for about 5 minutes on her own. I think it pulls on her scare tissue and muscles as she stabilizes her core, she just cries in discomfort and pain until she lays back.

I think that is all now, I feel like I am just rambling now---sorry for an extremely random post.

No tubes...for a bit

2009-10-01T21:19:00.000-06:00

We've been working with Gracie even more on oral eating and really it isn't going anywhere. Today I needed to change her NG, so I figured we would try feeding her without her NG tube to see if that would help. No change!

Gracie loves to put things in her mouth, but when it comes to food, she very rarely will allow food to pass the middle of her tongue before she lets the food pool out of her mouth. So in addition to different textures, we are trying different tastes too. Yesterday Grace loved sucking on a piece of roast beef, and last week she couldn't get enough of the olive oil and balsamic vinegar (like at Macaroni Grill) on a piece of bread. One day it will come...even if it is when she if 16 :)

(Gracie's way to wear her oxygen. Do you think it still does her any good? She is constantly doing this. )

In addition to the NG tube experiment, I took Gracie's oxygen off, just to watch her sats...it took about 45 minutes before she dropped below 70. But boy did we enjoy those 45 minutes of tube free freedom. I don't know who was happier---Gracie or Morgan. Grace rolled all over the house, she rolled into corners and places that she never has been able to get to. All the time, Morgan danced and sang, "Yeahhhhhhhhh, Gracie has no tubes! Yeahhhhhhhh, Gracie has no tubes! No more tubes for Gracie."

It was so hard to put the oxygen and NG tube back, Gracie just looked at me and started to pout. Oh how I dream of the day that Gracie could live off of oxygen, even if it is only for a couple of hours a day.

For those of you wondering, Morgan did great with her surgery. She didn't complain much of pain, but was very whiny and not herself for several days. It was so sad, all she remembered was that "they put the mask on her and then her teeth ripped."

Another Surgery

2009-09-25T11:14:00.000-06:00

Today we are at same day surgery, but it isn't for my sweet little Gracie. Morgan is having some major dental surgery done today and oh how it pulls at my heart strings to send her off. I think in a way it is a little harder with her---she is older, more aware, and can actually verbalize her fears and anxiety.

Morgan has very poor enamel on her teeth, so she is having four crowns and a root canal---more work than I have ever had done on my teeth.

She was so brave as they wheeled her away in the wagon. Morgan gave me a big kiss, held on to her puppy, Yuppie and off she went without a tear, though lots of apprehension in her face.

She'll be in a lot of pain when she comes out....poor thing.

Pictures

2009-09-20T21:32:00.000-06:00

It has been a while since I posted pictures, get ready!

Inside playing.

Outside fun!

Those of you who know Gracie, know that her swing is literally hers and our saving grace---unfortunately I don't think we will be using it much longer. She hangs out of it, this picture she is awake but sometimes she sleeps right through it.

Cousin fun

Look who is sitting up!! Gracie is doing great working on sitting, today she sat up for 5 minutes at a time. She has an ear infection and is still adjusting to the changes in diuretics, so she isn't as happy as normal.

Sisterly love

what's going on with Grace?

2009-09-15T20:41:00.000-06:00

I know I haven't posted much recently...I have had a hard time justifying sharing my frustrations and disappointments (that I have been feeling concerning Grace and her development) enough to write while heart friends are losing their earthly battles, receiving terrible news, and just plain struggling more than what seems fair. It is so hard to see so many children struggle and go through more than what most adults go through in their entire lives. These little children truly are amazing and very special spirits that teach us oh so much.

I recently had a great conversation with one of Gracie's physical therapists that put things into perspective for me. We decided that Grace is more like a six month old developmentally, then she is a 14 month old. Really, Grace was so sick until after her second surgery in April that she didn't have energy or strength to focus on much more than healing her body.

We had an appointment with cardiology yesterday and Grace is doing relatively well---we just need to get her off of some of her diuretics, especially since they are keeping her from even being refereed to GI about placing a G-tube. So what we are planning on doing is weaning her off of her afternoon dose of bumex, if by the end of the week she responds with increase oxygen needs, coughing, etc. we will get her into the cath lab soon to coil off some more collagulants (enlarged veins and arteries). But if she responds well, then we will continue to wean off of her other diuretics.

Gracie is now 30 inches long and 15lbs, so she is still her long skinny self. Dr. Jou wants me to try increasing her calorie content again from 24 kcal, to 27 kcal. I honestly don't think she will tolerate it but who knows. I'm anxious to get a g-tube placed, I've heard that kiddos just gain more than with the NG tube.

Gracie is rolling all over the living room these days. Its fun to see her actually try to go and get something that she wants. And if she can't reach it, she will let us know. Grace has started vocalizing so much more now, she just says ahhhhhhhhhh, dahhhhhhhhh, ahhhhhhhh, dahhhhh over and over again. I love it! We are working so hard on mastering sitting, Grace hates it, but is doing quite well. So far she has sat up for two minutes straight before tumbling over.

Prayers needed

2009-09-03T15:20:00.000-06:00

About an hour ago I read a devastating update on a dear sweet family---The Stricklands. Their little miracle Mason is in heart failure and just found out that he is not a candidate for heart transplant. I went left my computer and attempted to do some household chores just to find myself literally sick to my stomach for this sweet family and their little one.

Please pray for them to feel comfort, peace and direction. Please pray that they will enjoy every day they have left with Mason and that they will be strengthened more than ever before.

PT exercises and messy eating

2009-08-11T22:40:00.000-06:00

I finally found an exersaucer I thought would be great for Gracie, I just had to wait to find a good deal on KSL. People were asking anywhere from $75-$50, but holding out paid off and I got it for $30. I had to spend almost 2 1/2 hours cleaning it but once it was ready, Gracie loved it! It has a seat that rotates 360 degrees, and that also moves back and forth on a track when she finally gets strength in her legs. The floor of the saucer is piano keys that make music and light the keyboard on top up. I'm hoping that she will gain trunk strength and build up strength in her leg muscles too.

I love the last picture, though Jason hates it, but it makes me laugh so much. Gracie is so funny.

The hair is so funny because she pulled out her ponytail.

Gracie usually doesn't mind sitting up, but today she just hated it---oh well, she still needs to do the exercises.

Gracie still isn't eating much but she loves to play with her food. Today it was bananas and cookies. I was nieve enough to think that she actually ate some of the food she had in her mouth, but she was storing it in her cheek. I took her up for a bath and when I laid her down to undress her she started gagging and chocking....

I love her silly and michevious looks

Fun with my nieces

2009-08-11T22:18:00.000-06:00

We've been having a lot of fun with my nieces since they have been here. We've gone to the Draper Fun Center, drove the Alpine loop and have gone to Boondocks so far. We still have a lot of fun planned---I think tomorrow we are going to hike and have a fire and smores tomorrow and see what else comes our way.

Cammie---these pictures are for you.

We started hiking, but the girls decided they needed better shoes!

Fun Center Fun

Just hanging out at home.

Sweet Bridger

2009-08-08T16:00:00.000-06:00

We just heard that one of our sweet heart friends lost is battle today and returned to heaven. Please remember this sweet family in your prayers that they will be comforted and strengthened as they mourn the loss of their sweet, beautiful boy.

Hold you sweet little ones a little tighter tonight and enjoy every moment you have with them. Wether healthy or sick, life is so fragile and such a gift for every moment we can hold and love our loved ones.

Liberty Park

2009-08-07T21:40:00.000-06:00

I have a new favorite park, in fact up till now I really never like any of the parks here in Utah. I'm use to huge parks with so much to do being from NY, but finally I have found a park that I love and enjoyed so much, even if it was only for 3 hours. That park is Liberty Park, up in SLC. I've wanted to go explore it for quite some time, so as I planned an outing with my girls and my nieces. I thought today would be a perfect day to go, especially since temps were almost 20 degrees cooler.

We packed a picnic and headed out. I forgot about the fires in the valley and seriously thought about turning around or finding an indoor activity in fear that the air quality would be terribly detrimental to Gracie and her health. But I decided to go and just watch her cues and I'm glad I did because it was such a wonderful day and the air actually wasn't that bad once we got out of Utah Valley.

Morgan played on the playground for a good hour and loved it. Normally she gets bored fast, but there was too much to explore and enjoy. Her favorite part was the toddler area where she could "cook;" I have such a girly girl. Unfortunately I forgot to pull out my camera, so no cute picture at the playground.

(I couldn't choose my favorite, I tend to have that problem.)

We then went and had our lunch. I laid a blanket on the ground for Grace and she was as happy as could be. She rolled and talked and just was so content watching the leaves and being outside. I love that she loves to be outside, very rarely does she ever cry and get upset when we are out playing.

My nieces seemed rather bored so we roamed until we found the peddle boats. They took Morgan and went around the pond a couple of times and really enjoyed themselves. If you look at the pictures you will notice a random little boy in them. Well what happened is, we waited in line for 20 minutes and all of a sudden this lady who was waiting with said boy totally cut us and tried to get a free ride. I wasn't going to have that, so I gladly announced that the boat could only hold four and we had three and were waiting before them. As the girls were getting in, she asked if her son could at least ride in the empty seat. I couldn't say no with him there so I said sure, as long as she felt comfortable. I was shocked that she would be so bold to mooch a free ride from us that I promptly called Jason and told him what had happened. Well when they got off the boat she offered to give me a couple of dollars, because she was now able to save her ticket for another day. I firmly declined, because I then felt guilty for all of my negative and frustrated thoughts toward this woman. I'm sure you all are happy I just shared that long story.

Quick update

2009-08-05T21:22:00.000-06:00

It has been a while since I posted and thought that I would just update really quick. Gracie is doing well...finallly. When we were discharged from the hospital Grace was still not quite herself, and then a couple of days later came down with a bad cold or something and ended up needing 2 liters of oxygen for several days. It wasn't until about five days ago that she finally started playing and acting more like herself. I'm just grateful that she is more playful and tolerating outings again.

Morgan is great, healthy and happy like always. She is a sweetheart and always great at just going with the flow. I love that she is not despising Grace and acting out.

My nieces are visiting for three and a half weeks, they are 13 and 14, so we are trying to do lots of fun free things that work around Gracie's schedule. Having teenagers around is giving me an insight into the future---the good, the bad, and the ugly :)

Jason is doing well, he is loving the summer days and low mail count---it makes for very short days, even if they are scorchers. It will be hard come October when the mail starts to pick up again.

Maybe home today

2009-07-24T08:41:00.000-06:00

I know I was going to try and update all the details of how we got back to the hospital, but frankly its too exhausting of a story to share. If you're dying to know, call me and I'll tell you all the particulars.

Gracie seems to be doing better, she actually was playful yesterday for the first time in a week and a half. No more fevers, all of her cultures and labs have come back negative and we continue not knowing the cause of the fevers. She did start having diarrhea last night and today, but I'm hoping that doesn't keep us here another night.

So now I'm just enjoying letting Grace finally sleep and waiting to hear if we get to go home today.

Do you know what days of unexplained fevers get you?

2009-07-23T00:42:00.000-06:00

At least for Gracie, we got admitted to Primary's for tests and observation. Gracie has had diarrhea for 9 days straight (finally stopped yesterday) and five days of fevers ranging anywhere from 100-103.

It has been a long day and we are just getting settled into our room, so I should sleep while Grace is sleeping. I'll post more details about how we finally ended up here tomorrow if time allows.

Not a baby anymore

2009-07-17T22:00:00.000-06:00

For the longest time I have been wanting to post about my other sweet girl--Morgan, but I got carried away posting about Gracie's birthday celebrations.

Morgan has grown up so fast since Grace was born last summer, she went from this

to this

I wish I had the time to share all of her cute little phrases and things that she does, but here are a few of the things that have happened this week.

-Morgan still wakes up in the middle of the night and gets into bed with us only to be taken back to her bed. Last night she got into bed with us and when I took her back to her bed I noticed that she had put her shoes on her feet before coming in (when I went to bed her shoes were on her bedroom floor) I laughed so hard I was lucky I went back to sleep.

-Yesterday we called her grandma to see if Morgan could go over and play, when grandma said yes and we were heading out the door, she said, "My grandma is amazing, that's why she is my gammy."

-When we are in the car driving, she is already a backseat driver---she'll tell me to slow down when the light turns yellow or to stop if the light is red. Today she even told grandma as they were pulling away that she needed to put her seat belt on.

-The other day she was doing something she shouldn't have been doing and she knew it, just as Jason was getting ready to say something to her, she looked at him and said, "Daddy, don't get mad, be happy!"

Morgan loves playing mommy with her babies and loves cooking with mommy. Morgan loves to cuddle, especially when she gets a cup of milk, she'll even sit next to Grace and hold her hand. She knows way too much about medical things and always talks about being a nurse or doctor. Morgan loves her cousins and is very excited for her "favorite Aunt Kat's" twins to be born. Morgan loves other kids and loves playing with them, I think she will be the type to go up to those kids that are alone and be their friend. I could go on, but I think you get the idea---I think Morgan is amazing.

Morgan has blessed our family in ways that can't even be explained. I truly believe that if it wasn't for my sweet girl, we wouldn't have been able to make it through the last couple of years. Morgan we love you and are so glad that you are our baby, oops, big girl! Gracie is so lucky to have you as a big sister.

Last night as we were getting ready for bed, I asked Jason if he wanted to sing to Grace or if I should. Morgan wanted to do it---this is a replay of what happened.

A couple weeks ago I was getting the girls ready for their bath, I undressed Gracie and put her on the floor and heard Morgan changing her diaper, luckily my camera was close by.

More birthday fun

2009-07-13T10:00:00.000-06:00

We went up to Mutual Dell on Thursday to celebrate Gracie's birthday with family. It was so great, Gracie loves to be outside and watch the leaves in the trees and just be with family. The video above is a little long and loud, but I knew my sister would want to see it. (the video won't post, but I'll keep trying.)

I still can't believe that it has been a whole year...tonight I was rocking Gracie before bed and realized that she had her first open heart surgery a year ago today. I started crying and looked at Gracie who was staring into my eyes just smiling. She truly is my hero, my inspiration, my motivation to endure and persevere despite what may happen.

Its interesting how you can get so preoccupied with life that I almost forget Gracie is so frail and really could end up in the hospital without any notice. Though anyone could be gone in a blink of an eye, with these sick little heart babies you never know and I think that there is always a fear that they won't make it to see all their major milestones. I guess all I can do is enjoy each day and do my part to keep Gracie healthy and limit the extra stress that is placed on her heart.

On a different note, we had our first Hope Kids outing (a support group for children with terminal or life-threatening illnesses and their families) today. We went to an old-fashion family picnic on Antelope Island. Jason had to work so just the girls and I went and we had fun. Morgan made a cute little friend who is actually another heart kiddo, it was so fun seeing those two play. They walked around holding hands, played 'ring around the rosie,' and shared various snacks---this made me happy on so many different levels, but perhaps the biggest was that it gave me hope, hope that the day will come that Morgan and Gracie will be able to run around and play.

It was so nice to see other families out with their little hope kids (kids with cancer, various transplants, heart defects, etc.) playing and having fun. Life is hard and it is difficult at times to get these little kiddos out but how fortunate we are for a great organization that provides outings.

What we did today

2009-07-07T22:00:00.000-06:00

Today has been a great day. Gracie has been happy and just a sweetheart all day long, we had coupons for a free breakfast at Mimi's restaurant so we went out as a family for breakfast. Then before heading up to Primary Children's we had to make a stop at home---Gracie loves chewing on her oxygen cords and well she finally wore it down and made a hole in her tubing so we had to get a new nasal cannula.

You may be wondering why we went up to Primary's, (especially since she has to go back tomorrow to the OR for a sedated hearing test, RTU won't touch her because of her history) well I wanted to share this special day with our 'extended family' up at Primary's. So I made these cute little birthday announcements, wrote individual notes for our favorite nurses, doctors, and surgeons and ordered some delicious gourmet cupcakes (thanks Melanie @ Just Cupcakes) to share.

It was fun to see so many familiar faces in a non-sick, non-surgical setting and honestly I think that those we got to see loved seeing Gracie---healthy and full of smiles.

This may sound funny, but Jason and I really think that Gracie recognized those that we saw---she couldn't quit smiling or talking to them. The best was watching her interact with Dr. Witte (one of the Attendings in the PICU) and her surgeon, Dr. Kouretas. We didn't get to see many of our nurses, really just Carolyn, others were off or work nights, but hopefully they will enjoy their goodies.

We don't know what other fun things today holds for us, just enjoying being together and all being relatively healthy is enough for us. Birthday celebrations continue on Thursday with a family picnic in the canyons where Grace gets to destroy her own little cake along side her cousin, Cade who is only three weeks older. And if Grace is up to it, we may even give her a left over cupcake to practice on tonight.

Happy 1st Birthday Gracie!!!!

2009-07-07T01:01:00.000-06:00

You made it baby, you made it to your 1st birthday, you are my hero!! There were days where we honestly didn't know if you would make it through the night, but you always pulled through and surprised us all. It is amazing that after all you have been through you can still smile and laugh.

I know I post so many pictures and many times they look very similar, but these ones are my favorites from our most recent 'photo shot.' I feel like each of these photos shows a different side of my Gracie girl.

Gracie still lags behind quite drastically compared to other one year olds and even to many of her heart buddies who were born around the same time as her, but she is doing wonderfully considering spending almost an accumulated 6 months of her life in the hospital.

Grace is sitting up with support and absolutely loves her jumper, it is hilarious to see her get excited while in it, she just goes wild. Though she isn't eating much more than formula, she loves to suck on cheese puffs and carrots until she gets some on the back of her tongue and gags on it.

She still hates tummy time and putting weight on her legs, but we can get her to do almost anything when Mickey Mouse Clubhouse is on---she gets into a zone, kicks her legs in excitement and talks to the TV (I'll have to get video of it).

Though this year has been extremely hard and stressful and at times almost more than we could handle, we would go through it all over again just to have our sweet Gracie girl with us smiling and flashing her beautiful all encompassing eyes at us.

Grace, we hope this next year is filled with so much more joy and happiness and a lot less time at Primary's.

Catching Up---lots of pictures

2009-07-01T23:18:00.000-06:00

I can't believe that it has been almost a month since I last updated the blog---I've been trying to pack as much fun as possible into this summer in an attempt to make up for last summer and being in the hospital.

Morgan and Jason went camping over night, while Gracie and I stayed home. We did go up to pick them up and enjoyed some outdoor fun, but had to increase Grace's oxygen because of the increase in altitude. Gracie really enjoyed the hammock and swinging with her big sister.

We've been going to the park, going for walks and playing at Grandma's house with cousins. Gracie loves the swing hanging from their tree and loves to lay under it and watch the leaves blow in the wind.

We pulled out the swimming pool and though the water wasn't as warm and Grace would have liked, I think she loved her first experience in the kiddie pool.

But perhaps the most enjoyable outing so far was this last weekend, we went up to Eden, UT with Jason's parents for the night and went swimming and just enjoyed being a family. Though I swear we spent more time packing and loading the car---concentrator and all---it was worth it. My only regret is that I didn't bring Gracie's swing, those of you that know her know that she loves her swing and I was foolish thinking that she could do one night without. Thank heavens for grandpa, who was willing to walk around the parking lot with her at 1am in hopes that everyone else could get a little sleep.

Gracie enjoyed this swimming experience so much more just lounging in her little duckie float. She can maintain ok sats off of oxygen for about an hour, so we disconnected her and she did great. Unfortunately it wore the poor sweetie out and I didn't dare take her swimming again the morning we left..but there will be plenty of times to go to local pools.

Update

2009-06-08T14:27:00.000-06:00

Everyone is asleep taking naps and though I should be doing something more productive like dishes, laundry, exercising I am attempting to start and finish a blog entry. Things have been crazy and most of the time I feel so overwhelmed that though I want to write down my thoughts and feelings and send it off, I just can't---I guess it is just my way of responding---keeping it to myself till I burst :) It may not be the most healthy thing, but hey it works and keeps me going.

It seems like Jason has been out of commission for the last 6 weeks--first knee surgery and now pneumonia. We thought he was getting better but today he woke up feeling just as terrible as he felt last Thursday. We are going to the doctor in a little while and there is a very likely chance that he will be hospitalized--the last time he was in they told him if he didn't get better he would have to be put on IV antibiotics.

Gracie is doing well other than teething like crazy, in addition to the 6 teeth she already has, four more are working their way up including 2 molars. We had a follow-up cardiology appointment last Monday and things look good, we don't go back in until September!!! Unless of course she needs another cath sooner than later, her last Echo showed that there is a vein or artery that has grown quite large that it looks as if the blood flow in her left pulmonary artery is flowing backwards---we're hoping its just a collateral that needs coiling because if not things aren't going looking so good in her little heart. But we are waiting as long as possible before they want to go back in.

We did try weaning her diuretics this last weekend and we almost had to take another trip up to Primary's...instead I played doctor and put her back on her diuril and called Dr. Jou the next day to tell him what I had done. Looks like she will be keeping her diuretics and weekly blood draws for awhile, least she is off of the ativan and methadone---though they would have come in handy this last weekend, she was miserable and wouldn't sleep or stop crying.

We went to our family doctor today and Gracie got her second round of immunizations; she was so happy the entire appointment until the nurses came in with the shots in hand, then she screamed like there was no tomorrow. She weights 13 lbs 15 oz and is 27 in long--she's so close to 14 lbs, wahoo!! We're all optimistic she can gain more weight on her own so we are holding off on the G-tube, which makes me happy. I think the thought of one more surgery drives me nuts.

Not much new to report developmentally wise, Grace's physical therapist comes again on Wednesday and I'm going to see about getting them to come more often since he is only coming once a month. Though I know how to do the exercises with her, she just seems to do it better for him. Funny, huh?

Yesterday Gracie turned 11 months old, I can't believe its almost been a year. What a year it has been, there were so many times we didn't think she was going to make it but I am thrilled that she has proven us all wrong---YOU GO GRACIE GIRL!!!

Yesterday evening: bathed, pjs and getting ready for an evening walk.

Eat your heart out

2009-05-26T23:16:00.000-06:00

Gracie just started trying to laugh and I think that it is the sweetest thing ever, after all she has been through she still wants to laugh and smile. Sorry for having to witness me making a fool out of myself.

We're home

2009-05-24T21:15:00.000-06:00

We left the hospital at 11:45 this morning and Gracie is doing well---other than not wanting to go to bed. Grace really is doing well other than being cranky at times, I think she still feels a little cruddy. I'm just hoping that she continues improving and that soon she will be back into her routine.

We're outta here

2009-05-23T13:10:00.000-06:00

So the orders have been written and we are transferring from the PICU to the floor as soon as we get a bed. I tried to work some magic and get them to just send us home, but no go, I don't have as good as a connection with the medical team as I do with the critical care team.

Overall it has been a good stay, Gracie has done great. The first two days we were here all she wanted to do was to sleep in my arms. Yesterday they started weaning her high flow and she came down great at 12pm they finally put her on normal oxygen and within an hour she needed to be weaned from 2 liters all the way down to .3 liters!!! She really is ready to be done with being sick, but they want her to go to the floor for at least another day of observation---we all know how I hate the floor.

I'm just so happy that this stay is proving to be quick and relatively painless. I will say this though I hope we never have to be admitted to the PICU again to the medical team---I really don't care too much for them. The Attendings don't introduce themselves to the parents and really don't involve the parents in their child's care. Who knows maybe I was just spoiled by the critical care team....it really does stink that I have so many opinions about PICU stays and staff.

Here's hoping to being home tomorrow!!!

Guess where we are now?

2009-05-21T02:14:00.000-06:00

If you haven't read the first blog of the night, Gracie is in the hospital she was on the floor for 6 hours before she needed to be moved down to the PICU for higher oxygen needs. So she is now on high flow of 8 with and FIO2 of 90, Gracie is still only sating in the low 70s. There is talk of possible CPAP, but I did warn them of what may happen, so as of right now they are holding put.

I knew the nurse that got Gracie so since I haven't slept really well in days, I got a room over at the Guest house and hope Grace stays stable and we both can rest. So I will post more tomorrow, just wanted to give a quick update.

Gracie is in the hospital

2009-05-20T20:34:00.000-06:00

After four trips in a week to Primary's Grace has been admitted. Three weeks ago, Grace had a double ear infection and was miserable, but once on antibiotics she quickly returned to her happy self. We started weaning her diuretics and she did fairly well, with her past we knew to go slow. So we went from three times a day, to twice a day for a week and then the following week we went down to just once a day. After being on just once a day diuretics for a couple of days, Gracie started needing more oxygen---Mother's day night she went from 1/4 of a liter to 1 1/2 liters. I was able to wean her down to 1 liter and that is where she stayed till Wednesday night.

Once she was put to bed, her sats dropped down to the sixties and even after increasing her oxygen back to 1 1/2 liters she still only was sating in the low 70s. I felt I needed to take her in, so 10:30pm we take her in, only to have them titrate her oxygen down to 1/2 liter and send us home. I felt stupid! I got her home and again she sated low, so I thought our pulse oximeter was broken and had them bring us a new one. Gracie sated in the mid 80s when we first hooked her up but that night again she was sating in the 60s and I couldn't get her sats up, no matter what I put her oxygen on. As I sat on her floor, in desperation I felt impressed to hook her up to her portable tank and see what happened, she sated just fine on 3/4 liters of oxygen. Turns out her concentrator was acting up.

After all that was taken care of, Gracie did great until Friday night/early Saturday morning, having a fever of 104---by this time I didn't know what to think, we had increased her diuretics back to twice a day---so into Urgent care we went. They couldn't find anything wrong with her but wanted to give her a shot of Rosefin (an antibiotic) I didn't feel comfortable with this and after calling the cardiologist on call he didn't either. We decided to watch her since she hadn't had any more fevers and if she had any more I would take her up to Primary's for a total work up, then Cardiology would follow up with us on Monday since she had an appointment.

Well no fevers for two days, in cardiology on Monday it seemed as if Gracie had developed a plural effusion so we started over with her diuretics at three times a day, since she was still on 3/4 liter. Over night Gracie got worse, had high fevers and needed 1 1/2 liters of oxygen again. After getting the run around with cardiology and not being able to talk to anyone, I brought her up to the ER yesterday afternoon. Lungs were worse, we were sent home and told to watch her again. Today I had to up her to 2 liters and was really getting frustrated. I called cardiology and demanded to talk to the nurse, since I knew I wouldn't be able to talk to her cardiologist directly (which is stupid). I couldn't talk to the nurse but was told she would get a page with and urgent message and she should call back soon. An hour later and increasing to 3 liters of oxygen she calls back, I tell her what had been happening and told her that I needed to talk to Dr. Jou immediately or else I was just going to go to the ER again--he called me back in 10 minutes and decided that we needed to admit her and watch her for a couple of days, but first we would do another echo and see if the heart was causing us problems. Though they suspect more collateral's that will need to be coiled again soon, the heart looked fine. If after this illness passes and Grace still needs more oxygen we will be going to Cath lab for the 5th time.

So the conclusion was that Gracie probably had pneumonia, but when we admitted her to the floor, they said they were going to test for RSV and I mentioned they had done all that in the ER the day before and the results...CROUP!!! So we will stay for a couple of days and get Gracie over this, watching her oxygen needs closely and hoping we won't get worse and need to go to the PICU because we all know once she is there she doesn't ever want to leave. Gracie is currently on 2 1/2 liters and we'll just watch her and hope that she has reached the peak of the virus and will get better and hopefully come home in a two to three days.

This has been such a new experience, we have never been hospitalized without having a surgery first, I kind of have to reassert myself and let the staff know I do know what I am talking about. But hopefully it will go well and we won't be here long enough to hate it.

Just watch out all you heart moms, the nurses her have said that they have seen lots of Croup around the last few weeks, more than normal.

Look Who's 10 months old!!!

2009-05-07T21:45:00.000-06:00

(These are some of my favorites from the last few days.)

Today Gracie turned 10 months old today and I couldn't be happier that she is where she is today...it has been a long 10 months, but completely worth it!

Gracie is doing so well, apart from her double ear infection she is battling. She is now drinking half of her bottles every three hours, eating her toes, and even rolled over from her back to her belly today all by herself. We have started her on solids again, but she is hating every bite and gags on it...I'm not forcing her, but wish she would be able to eat, she does so well with her formula. I give her some grown-up food to taste, she really loves to suck on fresh pineapple. Perhaps Gracie's biggest accomplishment is that she is only on 1/4 of a liter of oxygen, other than before her first open heart surgery Gracie has never been on that little of oxygen.

We have heard her giggle and it is the most precious sound I have ever heard. Gracie still isn't cooing and it worries me, but hopefully she will start soon. I have been assured that her vocal cords should be fine, maybe just strained and still recovering from being intubated so many times and for so long.

Gracie had her first family outing today, for dinner we had a little picnic at the park and for her first time outside she did well. She really loved to watch the leaves on the trees blow in the wind.

Here are a list of her favorite things:

Mickey Mouse Club house on Disney

Handy Manny

Big Sister Morgan

Daddy

Mommy

Her feet

Her Swing

The song 'Itsy bitsy spider'

Kicking her feet

Car rides

Any thing that can go in her mouth, especially blankets and her fingers

Brave or Stupid and Crazy

2009-04-26T22:07:00.000-06:00

It has been almost 10 months since I last attended all three hours of church, at first I loved only going to Sacrament meeting (I'd be lying if I said I didn't) but I realized I was missing it more and more with every passing month. Don't get me wrong, staying home with Gracie (when she was home) and protecting her was so much more important. Even on nice days, Jason would beg me to take her to church, even just Sacrament meeting and I refused, we either rotated every week or Jason's mom would come and watch Grace for us. Anyways...for the first time, we took Gracie to Sacrament meeting on Easter and she did great. We sat in the back corner, right where the accordion doors are, so no one would sit behind us. How wonderful it was to be together all four of us at church.

Jason and I talked and thought that maybe we might be able to take Grace to all three hours and attempt to go regularly. Well today we tried to stay for all three hours and it was so nice and Grace did great. Each class we sat in the back corner away from everyone. Whenever we went in the hall, Grace was in her car seat and covered. Since I'm new to the Ward, during Relief Society I was asked to introduce myself and I did---I also told them all why I sat in the corner and asked them to stay away if they had any signs of a cold and all the sisters seemed to understand.

I know we are still in the tail end of RSV season but there comes a time when you have to attempt to resume some type of normalcy. Plus I really have been needing the strength, uplifting spirit that comes from attending church and really focusing three hours on my spirituality. Though I try, it is so hard to devote time to reading scriptures and praying at home with Morgan and all of Gracie's care. By the time they are in bed and things are ready for the night, I crash--without fail I fall asleep praying in both my personal prayers and when I pray with Jason.

Hopefully Gracie will stay healthy and not catch anything and we can continue to reap the benefits of attending church---even Morgan was excited to be able to attend Nursery and play with friends for the first time in months.

A long update

2009-04-21T13:34:00.000-06:00

Finally....both Gracie and Morgan are asleep for their naps and I am hoping that they will stay asleep for a while, they both need it.

I thought I would take this time to attempt to update the blog and share how being home for 2 1/2 weeks have been. It was rather bumpy in the beginning, in some ways it was worse than bringing her home the first time, but in other ways this was nothing compared to October. However, Gracie definitely 'bounced' back quicker than I thought she would. Its hard to imagine that she was just in the PICU two weeks ago, looking at her now she looks great!!

We just had a cardiology appointment yesterday and our cardiologist is very pleased with where Gracie is and where she is going. Her chest x-ray looked amazing, it was so clear you could almost see the details on the coils and wires in her chest :) Of course they want her to be on less oxygen and she seems to be tolerating the weans I have been making, she came home on 1 liter, has been on 3/4 liter for the last few days and an hour ago I dropped it to 1/2 liter and she is tolerating it great even while she sleeps. But I don't think the day will come where we can get rid of the oxygen permanently--if she pushes it out of her nose, her sats drop to the 60's so quickly. Even though oxygen is a tricky thing to live with, it is the least of our worries.

We go back to cardiology in a month and then we start the major wean off of Gracie's beloved diuretics. Hopefully she'll do better now that she is so far out from her surgery. We were given the ok to switch back to fat containing formula!! We are slowly working our way back up to 27 calories, I hope that she can tolerate it because we really need to get her growing. Gracie only weighs in at 6.02 kilos, that's just a little more than 13 lbs. Which don't get me wrong is an ok weight, but she is quite long, so she just looks so much skinnier.

Gracie still has her NG and lately has been getting most of her feeds through it. Last week before we went in to have her broviac removed, she was orally feeding all of her daytime feeds, but I don't know what happened, she digressed and has only been drinking 30cc, if we are lucky. Hopefully it is just because she is teething or something and she will start eating more, she really seemed to enjoy it. For the most part she did great, she would spit up some, but I think it is just because she isn't use to getting fed that fast, so we are working her tube feeds up in how fast they go through.

I have been letting Grace mouth different types of foods and she seems to love it. I'll give her bitter biscuits or animal crackers and she will chew/suck for a while and even leave a remnant on her shirt! Sunday she got to taste lifesavers and some fresh pineapple and couldn't get enough. I think I will try some baby cereal in the next few days.

Still no full out giggles but whenever we play I can hear whispers of them and it just melts my heart, I just can't wait to hear that sweet little laugh. No cooing either, but she sure tries. Occasionally she'll let out a little 'ahhh' and I think it surprises her. Gracie is so happy and full of smiles these days, all you have to do is smile big at her and she'll give you this humongous smile. Even when she isn't feeling well we get smiles, but they are the tight lipped smiles that you can tell she is just trying to appease us.

Physically Gracie is doing well too, we are back to where we were pre-surgery. Gracie is grabbing her feet and even trying to suck her toes. She rolls to her sides, but just won't roll onto her belly. Tummy time can be tolerated for almost 10 minutes before she lets us know she is done. I have sat her in the bumbo and in the high chair and she even tolerated that well. She still has very little trunk control and no desire to put any type of weight on her legs....but she will get there, I know she will.

Morgan and Grace are best friends, Morgan tries to play with Gracie and Gracie can't take her eyes off of Morgan. The other day instead of saying we were going to the doctors, I accidentally told Morgan that I was taking Gracie to the hospital. Morgan got a concerned look on her face and said no, Gracie no stay there. Morgan is a great big sister and loves and adores Gracie.

I was making dinner last night and went to check on the girls only to find that Morgan had dumped the basket of diapers all over Gracie. Grace doesn't seem to mind though.

I know this is a long post, I'm sorry. I just needed to get all the updates out there. I should go, I'm debating closing my eyes or folding laundry before someone wakes up.

Cardiology...A love--hate relationship

2009-04-16T23:45:00.000-06:00

I have been meaning to post an update on how we are doing at home, but have had no time, that post will come within the next few days. But for those of you who may need a Gracie fix until then enjoy this little video.

I don't think she is enjoying it as much as I am, but she did try to laugh, hence the hiccups.

As many of you other heart families may know, these little ones get addicted to some major narcotics and as a result must experience detox and to help them wean off of the narcotics they are given other controlled substances to help ease withdrawal. Anyways, Gracie again came home on an ativan/methadone wean, slower than they typically try to wean, but faster than I think is really necessary... Well Gracie has been struggling with the wean, so I have slowed it down with the advice of our family doctor, as a result we have run out of the liquid life saver since the docs only prescribe the exact amount with no refills.

Wednesday I realized that we were very close to being out of methadone and didn't know what to do. Our doctor is out of town, so I couldn't call her office, so I called Cardiology up at Primary's, I left a message and waited. No return call, so first thing this morning (8am) I called again and spoke to the receptionist. I explained that we HAD to slow down the wean because Gracie was having severe withdrawals--increased vomiting, diarrhea, and fevers once we went from three times a day to twice a day. I told her that this morning I used every last drop and it still wasn't enough to equal the does she was getting. The receptionist told me she would mark the message as priority and that I should hear back within an hour or two from the nurse, once she got in. I asked if she wanted to know where we were on the wean process, but she assured me that the nurse would find all that out.

So I waited and waited, finally around 3pm I called again, I spoke to another receptionist that wasn't too helpful. She checked the notes and I guess the nurse was waiting to hear back from the cardiologist to know what dose to prescribe. I asked why I never got a phone call and the receptionist said that the nurse must have been waiting to hear from the cardiologist. I explained that it didn't make sense because how was he to know where we were on the weaning process, especially since we slowed down and deviated from what was prescribed. The receptionist assured me that the cardiologist would know since he could look back at Grace's discharge orders---stupidity if you ever asked me---unless the cardiologist is psychic too---he isn't going to know. So I explained again that Grace had no more methadone, that she is highly addicted and extremely aware of when she is late with doses (ask any nurse who has ever worked with Grace). All the receptionist could do was tell me that hopefully I would hear from someone today.

Well 5:30pm rolls around and nothing, so now I'm freaking out, I have 2 1/2 hours to figure out what I'm going to do. I thought, well I could increase her ativan dose, try to knock her out with Benadryl all night and get through till morning. I called our home health nurse for advice and suggestions, because she is wonderful and knows so much and she said I could increase her ativan dose if I had to but that I should try calling again and ask to speak to the cardiologist on call. What brilliancy, because, within 5 minutes I was talking to a cardiologist, who understood the urgency of our situation. He wrote the prescription and was even going to fax it down to the pharmacy, but because it is a controlled substance I had to go up to get it. It now being 7pm I had to get the prescription and fill it all as close to 8pm as I could. So I left home rushed up to the hospital (about 45 minutes away), waited about 10-15 minutes for the cardiologist to meet up with me and rushed back down to the pharmacy to fill the prescription which took 30 minutes.

I am pleased to announce that I went to Primary's and back in 1 hour and 15 minutes, got the prescription filled and had it in my little Gracie's stomach by 8:30pm, only a half an hour late! I'm super mom! So I love the cardiologist that we get to work with, but absolutely despise working with the clinic over the phone, they need to learn how to better assist and help their clients....lesson learned--if you need to speak to a cardiologist, just wait till after hours!

Home and loving it

2009-04-06T22:32:00.000-06:00

When the day finally came that we got to bring Gracie home, I wanted it to be a surprise for Morgan, so we didn't tell her and got Gracie all settled and then brought Morgan home from Grandma's. This video is Morgan's reaction, its almost two minutes long, but I don't have the time or the energy to edit right now...sorry.

Being home is wonderful, but oh so difficult. Gracie loves being home but she is still having a hard time, she sleeps a lot but is awoken easily due to all the secreations in her throat and nose--all I have to do is turn the suction on and she freaks out. We were sent home on an ativan and methadone wean and well Gracie is despising every minute of it, why do the doctors at Primary's always want to rush the weaning process? Luckily our doctor is willing to extend the wean to help Gracie so we don't stress her out too much because we all know how much she loves her 'drugs.'

The hardest part about having Grace home has been the nights, she wakes up easily and when she isn't waking up she has meds due, I'm hoping now that we have finished her IV antibiotics things will get easier and the nights will be better--at least I won't be up for an hour at 4am giving her the IV.

But as much as I can complain, we are so happy to have Gracie home and be able to do normal things. Today, Morgan, Gracie and I all played tea party, we went for a walk and read books and just enjoy being together. Morgan and I almost had Gracie giggling today---our homework for this week is to get it to slip out.

Here are some of my favorite pictures from the past few days.

Unfortunately.....

2009-04-02T21:13:00.000-06:00

Well, we are very disappointed that we will not be going to the floor anytime soon. When we got to the hospital today we found our little girl on regular nasal cannula!!! She is doing great and is even on 1 liter, tolerating bolus feeds and even nippled 9 cc first feed. So I strongly persuaded and fought hard and won---we are going home from the PICU tomorrow!!! Yes after two months, 8 1/2 weeks we are going home, it is very surreal and overwhelming, but I'm so excited.

The Attending on spooked me a little because he was hesitant to send Grace home, considering her history, but I know she will be fine and we could always come back if we need to. Plus there are several nurses who said that I could call them even at home if I need to. But really Gracie is doing great.

I'm sorry if this post is a little jumbled, I just can't believe we are bringing her home tomorrow!!

Update and Birthday Surprise

2009-03-30T22:17:00.000-06:00

Gracie is doing well, still in the PICU and slowly progressing. She is having a hard time maintaining high sats as we wean her off the high flow, but she is at 4 liters of flow and 50% oxygen--we may bring her down to three liters tomorrow, it just depends on how she does. We are optimistically hoping to be home by the first part of next week--cross your fingers!!!

I'm actually pushing to be discharged from the PICU, but we just can't get off of the IV doses of Bumex (diuretic). I've told them that they can send us home on it and I would even bring Gracie up every day for blood gases to be drawn and x-rays done, but I don't think its possible, so we are talking about different things to do to get Gracie transitioned to oral Bumex.

It's just so nice to see Gracie acting like herself, she is so playful now and content. Today we read book, played, and even got down on a mat on the floor and played and did some baby exercises!! Oh how I want to go home so Grace can start developing again, we have lost so many of the skills she had before the hospitalization.

As for my Birthday surprise...I came up to the hospital to see Gracie on Saturday afternoon after spending the morning trying to pack up all that I could since Jason and I were planning on moving the first part of this week. Normally Jason wants me to come home early, but on Saturday he told me to stay as long as I wanted, I didn't think anything of it and stayed until he called me to come home.

Well, I picked him and Morgan up at his parents' house and when we went to our apartment, to my utter surprise it was empty and almost completely cleaned!! Jason said that his wonderful sisters wanted to help us and thought it would be a great idea to move us while I was at the hospital. So I left at 11am, and at 11:30am Jason's dad was at our apartment and started loading up the truck with the rest of his siblings and mother joining shortly afterwards. Jason came right after he finished working and all this was done while they watched Morgan as well!! How crazy and amazing! They even unpacked most of our boxes for us.

Talk about an instant stress reliever...words can't express how grateful I am for all of Jason's family. I truly am blessed to have married into such a loving and caring family, each and every one of Jason's siblings, their spouses, and his parents would do anything they can to help one another and make their burdens seem lighter. I love you guys!!!

Thank you Jason, you are amazing and I love you so much. Thank you for your patience and love despite my lack of attention towards you. Thank you for making my birthday the best it could be, considering all that is going on.

Pink...my new favorite color

2009-03-27T23:23:00.000-06:00

I know that they say a picture is worth a million words, well what do these pictures tell you?

March 25th

March 27th

Yes, Gracie is now pink!!! She has never been pink a day of her life, but look at her now, she loved the cath lab and having all the coils placed. I'm loving it too! When I got to the hospital today, Grace had been extubated for 15 minutes and I couldn't believe how good she looked. She was sound asleep, woke up, played and then fell asleep in my arms. The whole time maintaining a beautiful pink tone and being as happy as can be. But when she did get mad she didn't turn her normal purple color, she turned a beautiful shade of RED!! It made me so happy, I could barely resist making her upset just to see her turn red and look more like a "normal baby."

It was the best day ever...a year ago we were mourning the fact that our unborn baby would have a life-threatening heart condition, but today I am rejoicing in her strength, accomplishment, and existence...could I ask for a better birthday gift (on Sunday)?

I'm sure I was annoying the nurses, I couldn't help but urge everyone to come and take a look at my pink little Gracie. Given the opportunity I would have paraded her around the unit stopping to tell everyone who would listen Gracie's journey and how far she has come. I realize we still have many ups and downs, its just the course for these little heart babies, but how wonderful it feels and is to see Gracie look the way she was suppose to look after her Glenn surgery on February 2nd.

Gracie, Gracie, Gracie

2009-03-26T22:13:00.000-06:00

Where do I start, today was a very long day---Gracie spent almost 5 1/2 hours down in the Cath lab! As we waited we were anxious and concerned about the length of time it was taking, but we couldn't help but joke about how this is typical Grace "behavior." It took two hours alone for the cardiologist to gain access to Gracie's veins and once inside, additional hours coiling and finding all the things that needed to be fixed. In all, Gracie had 15 coils placed and her pulmonary arteries were ballooned in an attempt to enlarge it and after all that we are hoping that Grace does great and will be home soon.

While sitting in the waiting room we saw various doctors that are following Grace walk to the Cath lab to check things out, as they walked back from the lab and saw us they would shake their heads and smile, instantly we all were thinking the same thing...Grace will be Grace! Perhaps the funniest was when Dr. Kouretas (her surgeon) came out and had a look on his face that seemed to say, "I'm glad I'm not the one doing the cath, I've done my time this time around."

But really Gracie is doing well, she is still intubated, we felt it was the best thing for her, to give her a chance to rest and recover (this way she got the good stuff, versed and phentanyl). Hopefully she will be extubated without much problems tomorrow and do just great.

Road trip

2009-03-26T14:57:00.000-06:00

Gracie took another "road trip" today down to the cath lab. She has been fever free for two days with a decreased CRP level all the way down to 1.1---so the Attending wanted to get her in as soon as possible before the fevers came back. Hopefully this is what Gracie needs and she will be a whole different baby.

She has been in the cath for the last hour and half, we haven't heard anything yet, but hopefully they will be done soon. The doctors are optimistic that Grace will do great, and after watching her through the weekend, she could potentially be moved to the floor on Monday or Tuesday. I know you all are probably as shocked as I am.

Though we are excited for this move and progression towards home, it couldn't come at the worse possible time---we are moving next week. So I will be a busy mama packing and getting everything ready just in case I end up taking up residence on the third floor with little Miss Gracie.

Thank you

2009-03-24T22:10:00.000-06:00

I should have waited before I posted the last post, I let my emotions and irrational thoughts get away from me and thought that Gracie was boycotting me--thank you for all of your comments reminding me that this certainly wasn't the case. Even Gracie must have realized that I was having a hard time because about an hour or two after I posted, Gracie woke up and decided that she was going to grant me some of the most precious smiles and coos I've been privileged to receive in weeks from her. We played for a good hour, she watched some tv and then allowed me to hold her while snuggling in for a nice long nap. Its so interesting that even though these little heart babies are so sick, so often Gracie is finding ways to "heal" my "broken" heart.

She is still doing well and is fever free...I'm hoping her CRP will be low again tomorrow and who knows maybe early next week we can go to the cath lab and we can work on going home.

Frustrated

2009-03-24T13:20:00.000-06:00

My father-in-law is constantly asking me how I am doing it (juggling everything with Grace being in the hospital and the frequent ups and downs she has been experiencing these last few weeks) I always respond by telling him that I just do, I have no other choice. But today at the hospital I just don't know anymore, coming up to the hospital I have always been able to comfort Gracie, I have always been able to make her smile and help her feel comforted and lately all she wants is to be left alone and to be in her swing. I know that she is still sick and just had a central line placed through her groin, but this is still so so hard. I feel like she doesn't need me any more, that it doesn't matter any more whether I come or not. The nurse today said that she thinks that her swing is her safe place because nothing bad ever happens in it, but my arms use to be that safe place and I feel like now she just fights it when I hold her...I always thought that the thing about Grace that was the best is that she wasn't like so many of the other heart babies that hate to be held, but perhaps being in the hospital this time around she has developed that nasty characteristic.

I know I'm probably over reacting but it sure is hard, I just want my baby back, I want her eyes to light up the moment she sees me and a big smile to cross her lips. I want her to want me to hold her and comfort her and cry because I put her down, not because I am holding her. I just want Gracie to come home and to be allowed to care for her again.

From a medical stand point Grace is doing ok, no fevers since yesterday and her CRP levels dropped from 17 to 5.5 overnight. Though the doctors say she seems to be acting better, I'm not buying it (besides they are only in the room for 5-10 minutes) she is sleeping so much, not really smiling and has no desire to play. I just have to remember that we are moving in baby steps---Gracie baby steps.