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.

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 :)

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.

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.

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 :)

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.