Tuesday, October 25, 2011

Floor life

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.

Saturday, October 22, 2011

Another update

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.

Wednesday, October 19, 2011

An update

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.

Tuesday, October 18, 2011

Update #1

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.

Saturday, October 15, 2011

Morgan's Princess Party



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).




video
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!


Friday, October 7, 2011

Cath Lab

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





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!

Friday, September 16, 2011

Happy Birthday Ryan






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.

Tuesday, August 30, 2011

First Day of School


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!

Monday, August 29, 2011

Freaking out

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

Tuesday, July 26, 2011

Raising Gracie's Star


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.




Thursday, July 21, 2011

Make-A-Wish

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

Sunday, July 10, 2011

Gracie's 3rd Birthday!!

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!

Saturday, July 9, 2011

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!