This blog has been very therapeutic for me. It has been a place to process the most difficult time in my life, to experience and celebrate strengthened faith, to pray, and to hope. But it has also been a place to be vulnerable, to be honest, to share pain, heartache, and weakness. Tonight I cried HARD. Not because of any bad news or any particular event, but because this is HARD. I miss my normal day-to-day life as I knew it. I miss my sweet little boy running up to me with joy in his voice as he greets me. I miss decompressing from the day as a family, Aaron playing and showing us how much he knows and has learned. I miss the dogs curled up and being snuggle bugs. I miss the life we have built together, so bad it hurts. I’m sad that life changed so quickly, even somewhat knowing it would but not how it would play out. I know this is part of the process. I’m blessed to have such a wonderful family and life that it feels like I am mourning something huge. I know that amazing things will come, and my focus and faith will replace the tough moments. Sometimes letting it out, naming it, and letting yourself feel those overwhelming things just has to happen.
We walked in to see Caleb with his eyes partially opened! After lowering the paralytics (muscle relaxers that were sedating him), he started moving his hands and feet and eyes a bit! He is still sedated quite a bit to allow the doctors and nurses to control as much as they need to for his healing, but it was so good to see this sweet baby moving a little. I’m not going to lie, it’s tough seeing him lay there and fight. No parent wants to see all of these tubes and machines or see their baby to not be able to interact. But when you realize that he almost lost his life, these small precious things need celebration!
Here are some medical updates and prayer requests:
Caleb is initiating breaths on his own. They were concerned that with lowered paralytics, he would try to breathe too fast. He is breathing over the ventilator but his blood gases are doing very well so it’s going fine! He is now taking 1 mL of breast milk every hour! As long as this doesn’t seem to be too much for his digestive system, kidneys, etc. then they will continue to give it to him. It’s such a blessing to know he’s getting pumped milk. The cardiologist, Dr. Sliz, who was working today, came by to chat with us. He wanted to share that the fetal echocardiogram and initial atrial septum stent information was shared with the cardiologist, Dr. Wayne Tworetzky, at Boston Children’s Hospital. After reviewing everything, he offered the opinion that Caleb would probably benefit from a Hybrid procedure. In previous posts, you may remember that I shared the different procedures that are used to fix varying degrees of HLHS. A 3 surgery repair, including the Norwood, Glenn, and Fontan procedures would create a single ventricle heart. Sometimes the Norwood and Glenn are performed and a biventricular repair is done to create a two-ventricle heart. Then there are variations that can lead to either result. Sometimes a staged bivent repair is done to get to two ventricles. And in Caleb’s case (possibly), a hybrid procedure can be performed where the PDA either receives a stent to remain open or prostaglandins (What Caleb is on now). A band is then placed around the pulmonary veins to control the amount of blood flow to the lungs. They don’t want too much blood going to the lungs and not enough to other vital organs. The Hybrid would allow Caleb time to grow and develop. There’s really no way to predict what that left ventricle will look like a couple of months from now so the Hybrid is a good safeguard from eliminating potential options, like the bivent, down the road.
They are bringing up Caleb to discuss these opinions in the big conference meeting they hold on Tuesdays where many cardiologists and surgeons meet or call in virtually at Levine Children’s and surrounding areas. Dr. Walsh will be on this call.
Some things that they are currently monitoring…
Something called NIRS monitors levels of oxygen in the blood used by vital organs to determine if they are processing too much or too little oxygen. Doctors and nurses really only use these levels to see trends. The body naturally will respond to unbalanced levels by delivering that blood and oxygen to the most vital organs. Sometimes the kidneys can be affected by this. Caleb’s kidney numbers were a little off so they are going to monitor bloodwork. They discontinued the Lasix since his urine output was good and they noticed that the elevated kidney levels started trending down so this a good sign!
They also sent off some blood work after noticing his white-blood-cell count was elevated. This doesn’t necessarily mean he has an infection, it could be the body’s response to stress or trauma, etc. He hasn’t shown signs of a fever or other infection indicators but they want to catch and treat anything super early if it does come up. We would appreciate specific prayers for there not to be any infection and for his kidney function to improve and trend within normal ranges. 🙏🏻
We walked in to see Gabriel and had to look around because we weren’t sure where he went lol! He was out of his isolette and in a bassinet! This boy is wanting to make so many strides! He continues to do well each day and has moved towards long-sleeved preemie onesies with a swaddle blanket and hat to see if he can stay warm and maintain a good body temperature outside of the isolette. He’s was a slow eater today but it meant more time for snuggles! Daddy got to change a poopie diaper and it made for a pretty humorous moment. We are loving these snuggles as it gives us a little boost while at the hospital. Gabe has moved up to 35 mL and is drinking most bottles. We pray he continues to make strides and get bigger and stronger each day!