Christmas 2009

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

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

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

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G-Tube surgery

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?

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

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

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.

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

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

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

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

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

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

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

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

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

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."