Many, many people have asked for updates on Gid, and I am so sorry I haven’t been able to supply them! Here it is!
Morgan and I went for our most recent visit with the doctors at UAB yesterday morning. This one was a little different than our previous ones though. In addition to meeting with our usual Maternal-Fetal doctor (Dr. Sutton), we also met with a representative from the nephrology department as well as a neonatologist about what to expect when we do finally get to meet Gideon.
We first met with an incredibly kind Nurse Practitioner who does most of the prenatal counseling for UAB’s nephrology department. She walked us through what to expect if he were to survive the birth. The kidneys themselves aren’t relied upon much in the first week or two of life, so the immediate concern upon birth will be the lungs. If we get those working well, then they will place a peritoneal dialysis (PD) line in his abdomen while also placing an Aquadex line in his neck. The PD line needs some time to heal to lower the risk of infection, so the Aquadex line is used in its place until it is ready. UAB’s nephrology unit is considered among the best in the country. That combined with their incredible NICU staff give Gideon his best chance for surviving this thing.
Next was our meeting with Dr. El-Ferzli, a neonatologist. The biggest subject of our talk with him was the immediate care that he will provide once Gideon is born. In a case such as ours, sometimes parents choose to decline care so they can spend every second with their child as they pass. Others try every angle possible to keep them alive. He stressed the importance of making a decision before the birth due to the stress and emotion that day will bring. He very patiently fielded all of our questions, and gave us all the information we need to make the best decision for Gid.
Our last meeting was with our usual Maternal-Fetal doctor, Dr. Sutton, for an ultrasound and discussion of findings. It had been about a month or so since we had seen baby boy, so we were really excited about that. He is growing like the champion he is (we were 32 weeks and 2 days pregnant, and he measured 32 weeks and 1 day). We even caught him in the middle of doing “fetal breathing exercises” which was pretty darn cool to see. Dr. El-Ferzli mentioned to us that one of the things we should look for on the ultrasound was his chest growth. Many times, kids with under-developed (“hypoplastic”) lungs have a chest circumference that is far below where it should be due to the lungs not filling the chest cavity properly as they grow. But apparently, nobody told Gideon that because his chest circumference was in the 75th percentile! So it looks like he will be big and barrel-chested like his dad. He even managed to weigh in at just under 4.5 pounds! Only half a pound to go to meet the dialysis goal weight!
Now to be perfectly transparent, the prognosis has not changed much. This visit, we did something that we have never done before. We asked exactly what the chance of survival is. As gently as they could, they informed us that it was most likely somewhere under 1%. Morgan and I had expected this, but there is just something about that statement that a parent can never get used to. However, there is reason to be excited about the ultrasound findings. There weren’t many ways to maximize his chances of survival, but he managed to hit every one of them. Like I said earlier, this man is an absolute champion.
And now we know when we will get to finally meet him! October 2nd, Morgan and I will head back to UAB to begin the induction process. Dr. Sutton has talked for a while about having him at 37 weeks, and that is exactly what we will be doing. With his condition, we have to find a balance between maximum growth and trying to prevent cord compression. He needs to be as big as we can get him, but the larger he grows, the more likely he is to compress the cord (which would be fatal) given his lack of fluid. With our most recent weight estimate (~4.3 pounds), that gives us five weeks to pack on as much weight as possible. As much as he currently moves around, I believe he is doing the fetal equivalent of push-ups so he is trying his best to add on some muscle for his big day.
Many people have asked us how they can specifically pray for us. First, praise Him for growth! Owen was born at 6lbs, 5oz so we were a bit nervous about reaching 5lbs by 37 weeks. But he is growing like a weed, especially in the all-too-important chest! We could not have asked for more in terms of growth. Second, pray for Gid’s lungs. Functioning lungs won’t fix every single issue, but it allows us to focus solely on the kidneys, improving his chances. Third, pray for Morgan. Because there is no fluid around the baby, she feels every little movement he makes (we thought Owen was active…). Sleep is both inconsistent and not terribly restful. Throw in an adorable, hyperactive two-year-old, and you’ve got a recipe for an exhausted mama. Fourth, continue to pray for strength for both of us to keep seeing and taking advantage of the opportunities we are given through all of this. We have both been given many chances to speak about all the Lord has done for our family, and we want to capitalize on every single one of those.
I’m not sure that Morgan and I will ever be able to convey how much each one of you means to us. It seems that every step we take, there is someone right there asking how we are doing or handing us a Chick-fil-a gift card/gas money for an upcoming Birmingham trip. Each of you are helping to hold us upright, and, in the process, are proving that God’s design for us is one of unity and community. Suffering is something that one day will be a part of our lives no longer, but in our broken world, suffering provides an environment for us to experience God’s power to its fullest. We become privy to the fact that life is a war, and our God is William Wallace — face painted. Claymore in His hand. FIGHTING for us! We so often think that we can go out there and do all the fighting ourselves, but it is when our strength is exhausted that we look to the True Warrior. To be able to witness Him in all His might is something truly marvelous.
“The Lord your God is in your midst,
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.” – Zephaniah 3:17
“Wait for the Lord;
be strong, and let your heart be courageous.
Wait for the Lord.” – Psalm 27:14
meddreams 