Tuesday, June 30, 2009

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 :)

Thursday, June 25, 2009

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)

Friday, June 19, 2009

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"

Thursday, June 18, 2009

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.

Wednesday, June 17, 2009

Heart Cath Time

We just received a call from the heart cath lab and we are to be in admitting at 10am. The procedure itself will not start until around 11:30 or 12 depending on how the cases are running (long or short) tomorrow. We probably won't have any results until late afternoon, but will try and update when we do.

Burden/Thank YOU

I just have such a burden on my heart this morning to continually thank each and everyone of Grace's doctors/nurses/therapists. I wish there was a way for each of them to know just how much they have impacted our lives. I know not everyone has these experiences with medical personnel, therefore I continually thank our heavenly Father because we have had the most amazing individuals care for Grace every since Grace was still in utero. We have had nurses stop and pray with us, cry with us, a surgeon that was not willing to give up on her, even when every other sign was telling him he should, nurses who deserve WAYYYYY more credit than they receive, cardiologists who have had such gentleness, compassion and patience with our never ending questions and concerns, feeding therapists, occupational therapists,and speech therapists who have all become like part of our family. I don't have pictures of each and everyone of you, but please know if you have ever cared for our daughter, we truly thank you from the bottom of our hearts. Below are just some of the individuals who have been placed in our lives and have made this journey so much easier.

I couldn't end this post without including our family. You have been there for us in ways we could have never dreamed or imagined we would ever need you to be. From the countless number of prayers you have prayed for us, to the hours you have driven to be with us during each surgery/procedure, to making a quilt in the waiting room that each of us stitched a heart on, to decorating our hotel room to make it feel like Christmas, to buying us a microwave for our room, so we didn't have to eat out all the time, to letting us show our not so "nice" sides and still loving us unconditionally. There are soooooo many more ways I could go on and on, but just know none of them have gone unnoticed or unappreciated. We love you guys sooooo much and thank you for all you have done/do for Grace and for us. We are so blessed.

Sunday, June 14, 2009

Here Birdy Birdy

The past few weeks or so we have been able to watch several blue jays and cardinals flying around in our backyard. We decided to purchase a birdfeeder to put outside our living room window in hopes of getting a chance to observe them a little closer. We went this afternoon and picked one out. Ryan and Grace put it up, while mommy was the "memory catcher". She loves "helping" her daddy. Now were just hoping that the squirrels don't decide that we have put it up for them :)

Thursday, June 11, 2009

We Have A Date

We just received a call from the coordinator in Atlanta and Grace is scheduled for her heart cath on June 18th. We should have a morning time slot, but will know for sure the day before. It should be a 2-3 hour procedure and depending on the results/findings, determines whether or not she will go home the same day.

Tuesday, June 9, 2009

Plan Of Action

We just received a call from the cardiologists nurse and they want Grace to have a Heart Catheterization done. Unfortunately, we have not been given a date as of yet. We feel like it probably won't be for at least another week or so because of needing to stop her baby aspirin (blood thinner) first. We were almost 100% sure this was the route we were headed, so it comes as no surprise. Now, we are just ready to have the cath reports and find out what exactly is going on. We want to thank each of you so much for your sweet comments and time you have taken to lift our family up in prayer. I will post here as soon as we have a scheduled date.

Wednesday, June 3, 2009

Cardiologist Update

Over the past few weeks, we have noticed Grace's oxygen saturation's begin to trend downward rather than upward. We have also noticed that she has begun to have heavier breathing. After the Fontan surgery that she had in December, her oxygen saturations should be at the least, high 80's and mostly in the 90's. When we returned home in December, hers were in the mid 80's. However, they are now in the mid to high 70's consistently. They should be improving rather than decreasing. We had a cardiologist appointment this morning and an echo cardiogram, EKG, and x-ray were done. Those results will be sent to Atlanta and Grace's heart surgeon and a team of doctors there will be looking at the tests/her charts on Monday and deciding a plan of action. Her cardiologist feels like she has either grown some more collateral vessels (vessels that the body grows to try and "fix" the heart and itself) which steal her blood flow from reaching her lungs to get oxygenated, or that perhaps some of these vessels she already had, have gotten worse. There are several possible reasons as to why her saturations are lowering, but all of them will more than likely require a heart catheterization to be done in order to find the problem/s and/or to fix them. We hate so much the thought of her having to go through any more procedures, but know that some answers need to be found and that it is all what is best for her in the long run. We will update next week once we here more about the game plan.

Just so this post isn't all a downer, thought I would post a picture of Grace this afternoon after painting. She started out with a paint brush and this is how she ended,obviously using her hands was much more fun :)

Monday, June 1, 2009

Memorial Day Weekend

We had a wonderful Memorial Day Weekend. Unfortunately, Ryan was still TDY. However, Aunt Beth, Uncle Brad, Payton, Grant and Sara Beth came to visit Grace and I. I am so thankful that we are close enough to family for these quick and last minute trips. Sometimes those are the most fun. We were able to take in the local Air Museum outside of base, some Krispy Kreme doughnuts, watermelon and the time to make more memories. Sara Beth, thank you so much for "reading" to Grace. She LOVED it and she now "reads" to all of her baby dolls. She misses you so much and asks about you everyday. Payton, Grace asks to ride the "pane" with you everyday. She says, "sit in Pate's lap, ride pane soon". Grant, she wants you to ride in our car with us every time we get ready to go somewhere. She points to the front seat and says, "Gant ride". Thank you guys so much for coming to visit, we enjoyed it so much.