A Light Unto My Path

Today Adam and I went to our fetal echocardiogram at Wake Forrest Brenner Children’s hospital in Winston Salem. This is our third fetal echocardiogram and the third location we have been to. Many of these specialists and sonographers rotate to several locations, including our pediatric cardiologist.

As expected, the pressure build up has caused Caleb’s left ventricle to not grow as well and it is now becoming smaller than the right ventricle. It is still growing, just not at the rate as the right side. Though disappointing, this isn’t surprising and was honestly expected at our last echo 5 weeks ago. A positive is that there doesn’t appear to be more scarring. This is encouraging because scarring affects the ability for that ventricle to pump and grow healthy muscle. We are currently still in the stage of critical aortic stenosis but this is also in conjunction with what is called “Evolving Hypoplastic Left Heart Syndrome” (HLHS). How, when, and if it evolves is yet to be determined.

Our cardiologist is starting the process of scheduling our full day visit to Levine Children’s Hospital in Charlotte to meet the surgeon, cardiologist, and Maternal Fetal Medicine team. We’ll also have an echocardiogram with them. We’ll have a conversation with them about their thoughts on what to do. This will take place hopefully in the next couple of weeks. Through further research and based on what our cardiologist has mentioned, Levine’s team doesn’t do the complex biventricular repairs. He has a lot of faith in the capability of the surgeon to do an outstanding job with other pediatric heart surgeries though. This team would be doing the 3-part HLHS surgery (Norwood, Glenn and Fontan). IF this is the BEST option for Caleb and all parties agree that this is what is right for him, this is the direction we will go.

Dr. Walsh is also sending today’s echocardiogram to Boston Children’s Hospital, to be reviewed by Dr. Tworetzky. This would be where we go IF Caleb’s heart qualifies for the Biventricular Repair (2 ventricles) and if all parties agree that this is a great option for him and will result in a successful outcome, especially with the better benefits long-term. We will wait to hear what they say about the potential for this bivent repair. They may say they want to wait to review an echocardiogram once we are further along. Not knowing how much time we actually have before delivery, we wanted to get that ball rolling.

I wanted to share the difficulty in being at this place in our journey and to ask for specific prayers. We are in a stage of waiting and are not able to lock in specific plans, knowing that decisions for which way to go and where to go might be somewhat left up to us. Here are the tough issues we are dealing with at this moment….

  1. We don’t know to what degree Caleb’s left ventricle’s growth will be restricted and what its’ pumping ability will be at birth. Once pressure from the restricted aorta is relieved, it could pump well but we’re not sure. Scarring affects this as well. This affects whether or not he would be a good candidate for the biventricular repair.
  2. We could possibly deliver early unexpectedly at Brenner’s in Winston, and Caleb would then be transferred to Charlotte.
  3. We could deliver in Charlotte, and after birth, they determine he needs repair in Boston. This would be expensive, I would be in recovery with Gabriel and we would need to travel to Boston. Not ideal.
  4. Boston could want to wait until Caleb is born to better assess his heart and make a decision. Like the above possibility, this is not ideal.
  5. If Boston is an option, from the stories I have read, they would need to make the case with insurance that having surgery there is absolutely necessary and they are the only ones qualified to do this in order for it to be considered “in-network”. Hence, why it is important to get this figured out ahead of time.
  6. The costs associated with traveling to Boston, staying there for an undetermined amount of time, being away from Aaron, etc. Though it’s worth it if the bivent gives him a better quality of life long-term, this is something we will need to tackle.
  7. Some babies do part of the 3-part surgeries (Norwood, and/or Glenn) and get a bivent repair later on. No case is exactly alike, therefore hard to plan for ahead of time.

I’m currently 30 weeks pregnant and have another Maternal Fetal Medicine ultrasound and prenatal appointment next week. I’m praying these babies stay in as long as possible. Things are getting pretty uncomfortable, including sleep. Space is limited and these boys are very active, lol! I’m short-of-breath and tire easily, but so blessed to have an otherwise healthy pregnancy.

We would like specific prayers for clarity. We know that whatever direction things end up going in, God has this planned out already and knows exactly what we need and what Caleb needs. We need prayers that I continue to carry these babies as long as possible. Also, that our communication with Charlotte and Boston goes well, that they get back to us quickly and give us opinions that are clear and detailed. We want to feel confident in the decisions we make going forward and we would regret not exploring all the options for this sweet baby. I’m sure the surgeon in Charlotte is confident in his abilities in the surgeries he does well, however, we want him to be honest if the bivent in Boston is a good option and could give Caleb better health down the road.

In the book, “Draw the Circle”, there is a part that stuck out to be in my nightly reading. It says,

“There comes a moment when you must quit talking to God about the mountain in your life and start talking to the mountain about your God. You proclaim His power. You declare His sovereignty. You affirm His faithfulness. You stand on His Word. You cling to His promises.”

Draw the Circle, by Mark Batterson

This statement reaffirms the importance of trusting in God’s ability to move mountains. Giving our fears and worries to Him and watching Him move on our behalf- it isn’t easy but is such a symbol of having FAITH. I know He has amazing plans for our boys. I know that each one of them will grow to bless others around them. It is my hope that they understand how wonderful it is to see the miracles of God, give God the glory and share that with others.

Thank you for continuing to stick by our sides during this journey. God knows how much we love and appreciate each of you. We hope you know this as well.

❤️ Amy

For those of you who have asked:

https://www.babylist.com/amy-ross-baby-registry

A couple of playlist favorites lately…

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