Post Heart Cath/Cardiologist Update

Grace had her 1 month checkup yesterday for her last heart catherization in June. Can you believe her oxygen saturation level was 96 today :)The highest we ever saw before this procedure was low 80's. An x-ray or echo wasn't done today, because they want to wait a few more months, until the device that they placed in her is fully covered over with tissue. We have another appointment in October. We did find out some interesting information on why her mouth still tends to be blue. Evidently, her hemoglobin levels are high, but over the next few months, they should begin to level out. The way her body compensated for the lower oxygen levels was to create more red blood cells. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. Her body has not had time to adjust to the new oxygen levels and overtime we should notice a decrease in the blueness around her mouth. She was cleared to do all normal activity except for trampolines or football. I don't think our little girl will be playing football anytime soon anyway :) We plan on enrolling her in a 3 morning a week preschool at a church here, beginning in August. She was given written permission to sit down/rest if she wants or needs to and to watch out for dehydration. The cardiologist told us that post Fontan patients are much more likely to get dehydrated quickly when they play or are in the heat, as their little bodies are working sooooo much harder than ours. In addition, we have noticed that her energy level has increased significantly since the procedure was done. The girl danced and danced the entire time the cardiologist was talking with me and didn't slow down once. We have been enjoying the cooler weather break and spending time out on the playground. She begs to go everyday now :) I always forget to take my camera, but will try to get some pictures soon and post them for you guys! Thanks for checking in on us and come back soon, I have several posts I need to catch up on.

Baby To Toddler Overnight

I think Grace just officially passed through the last stage of being a baby :( as she spent her first night in her toddler bed last night. In many ways, she has stayed a baby (stages) longer than most, but I am not sure that I am ready for her to be a big girl yet :) Grace, we are so proud of you! You stayed in your bed all night and didn't get up once. Now to let you in on a little secret, we purposely skipped naps yesterday and she played and played at the playground in hopes that she would be utterly exhausted and not fight staying in bed. At first, she thought her bed was broken and got upset, but once Mommy and Daddy assured her that it was just a big girl bed now, she quickly calmed down and gave in to the exhaustion. Grace rolled out of bed once onto the pillows we put down on the floor, but shockingly, she just stood right up, crawled back into bed and went back to sleep with not so much as a fuss. We have a camera in her room to listen/watch her. We love the fact that we can check in and see if it is necessary to intervene, or if she will calm down on her own. This morning, she cried out for us, but waited on us to come get her and didn't get down. NOW, truth be told, we are not expecting every night to be this easy and certainly not nap time, but oh how we hope that maybe we will be wrong. Stay tuned for updates on how the transition is going :)


Last shot of Grace's bed as a crib


Daddy taking the front off and putting on the side board to make a daybed


Daddy having the talk about staying in her big girl bed


You tell me what that looks says to you?

3 for 3

What 3 year old do you know that gets 3 birthday cakes and gets to celebrate her birthday 3 different times? We happen to know one lucky little girl who fits this description :) We celebrated Grace's birthday with Ryan's parents first, then we celebrated on her actual birthday just the 3 of us, and last but not least, we celebrated again this past weekend with my side of the family.


You each made Grace's birthday incredibly special and we thank you so much for all of the birthday songs, presents and cards. I look at birthday's so much differently now since I had Grace. They are definitely something to be celebrated, but as is everyday. "This is the day the LORD has made; let us rejoice and be glad in it."- Psalm 118:24

Grace, you are truly a blessing to mommy and daddy. I have learned more from you in 3 years, than probably my whole life. We love you so much and look forward to many many more birthday celebrations with you.

Grace and I made a teapot cake on her birthday. She wanted all blue :)


Grace loves "flying the pane" outside of the BX on base. Since it was her birthday, she got to ride it a few extra times :)


The morning of her birthday I decided to take her to Chick-fil-A for breakfast and to play in their indoor playground. Unfortunately, it was a bit to big for her, but she had fun just climbing up and down one or two steps. The manager was so generous and gave Grace a cow PEZ dispenser and 2 free ice cream cone coupons.


Opening presents from the Voss's-thank you so much :)


Opening presents from the Cox's



Thank you Grams/Pops for my necklace, fun glasses, stickers and dress


My Little Pony Cake made by Grandma and Grace




Thank you Grandma/Paw for my Birthday bubbles, magnetic numbers, books, homemade pizza and homemade pancakes.

Happy Birthday Sweet Girl

Mommy and Daddy love you so much and we wish you a "HAPPY" Birthday. I will write more later, I am off to spend the day with by big 3 year old.


Grace's "Birth" Day



Grace's 1st Birthday




Grace's 2nd Birthday



Stay tuned for pictures of her 3rd birthday :)

Back to the Alphabet Game-Letter C

I am going to try and get back to this alphabet game. I think it will be a fun way for me to show some old pictures that never made it to the new blog and document things/memories we want to remember about Grace.

1) Cute things Grace is saying now- she asks us if we are okay anytime we cough or sneeze. I LOVE IT, it is so cute to hear her say, you okay? If we don't answer right away, she asks again until we tell her we are okay :)
2)Cardiologists: A special thank you to:
-Dr. Schneider (who diagnosed Grace with HLHS and her other heart defects after she was born)(Children's Hospital of the Kings Daughters in Norfolk, Virginia)
-Dr. Romp and Dr. Lau-Grace's cardiologists for the first two stages at UAB in Birmingham, Alabama
-Dr.Fleenor-Grace's cardiologist while we were stationed in Virginia at Portsmouth Naval Hospital
-Dr. Cardis and Dr. Ham-Grace's cardiologists now in Macon, Georgia
3)Coarctation of the Aorta-one of Grace's heart defects
5)Clint-Grace's uncle (we must get more pictures of you guys together :) )
6)Candice-Grace's cousin


7)Chapel Hill Baptist Church-the church where Ryan and I were married and where my dad and grandparents are laid to rest.


8)Chocolate Pudding (Grace was 20 months old)

Explanation of Heart Cath Results/Pictures

Grace went back yesterday around noon and Dr. Anthony Raviele MD successfully resolved her oxygen de-saturation problem. After Grace's Fontan surgery in December, a small hole called a fenestration was left. It acts as a temporary pressure release valve while Grace's body adjusted to the new circulation. It is usually closed, or closes on its own, anywhere from 6 months to a year after the Fontan. They found in the cath lab that while temporary closing Grace's fenestration with a balloon, that her oxygen saturations jumped up 15 points. They also measured the pressures in order to be sure if was safe to close this hole permanently. He said a safe range was from 10-12, anything higher being to risky, and her pressures were excellent with a 8. They actually re-calibrated and checked again because they didn't not expect hers to be that good. With these pressures, she was definitely a safe candidate for permanently closing the fenestration as she still has room for pressure build-up when she gets mad or fatigued. I will post a picture below of the permanent device used to close this hole. I actually have to carry a card in my wallet now with this device's information on it. I am completely in awe and just baffled at how they can do this procedure by simply threading a catheter up from Grace's blood vessel in her groin to her heart with this device on the end of it. In addition to the closing of the fenestration being needed they did find that she has a rather large AVM with several others coming off of it in her left shoulder area. However, as it stands, nothing can be done, or needs to be done with these at this time. Her oxygen saturations are considered to be in the desired range, so these are not a concern.

This link further explains the ins and outs of this procedure and more on Grace's heart anatomy.

Numbing Cream


Starting to feel a little loopy


We were told we have quite the little "druggie" on our hands. They said she kept trying to wake up and that the amount of medicine they had to give her in order to keep her asleep would have knocked you and I into next week.


This is what her stats are suppose to look like :) This was taken when she was recovering after the fenestration was closed. I wish I had taken one of before.


The device used to close the fenestration


Tired but oh SOOOO relieved Mommy and Daddy


Headed out the door and NOT looking back


Dare we say someone was just a "little" excited to be out of the hospital


Her Tutu was a surprise from mommy and daddy for all she went through yesterday


Dancing, or should I say "hobbling" in front of the mirror saying "Pincess, Pincess"

Home Sweet Home

I am working on another post now, but in short we are home safe and sound. Most importantly, they were able to fix Grace's oxygen de-saturation problem in the cath lab by closing her fenestration. I will include a link in the next post explaining all of that. She did amazing and was soooo glad to be out of the hospital as you will see in the pictures to come. Thank you again for all of the prayers that were lifted up on our behalf.