We had a plethora of appointments on Tuesday. We started the day with another echocardiogram (echo). I don’t believe anything changed since our last echo. After that we met with our cardiologist to go over any questions we had regarding the nutmeg lung diagnosis and discuss where we were at with our thought process so far. Surprisingly, at the end of the day, Adam and I didn’t feel as hopeless as we did last Friday when we first got the news.
We have decided to proceed with the same birth plan as we had prior to the nutmeg lung diagnosis. The plan is to have a scheduled c-section. We’re not sure if we will see David when he’s pulled out or not, but he will immediately be rushed from the OR to the cath lab next door, where they will cut through that intact septum, place a balloon to hold it open, and then a stent to make sure it doesn’t close back up. This will hopefully give us some time to assess where he’s at and the severity of the damage to his lungs. We’re not sure if he will be eligible for the first surgery at this time, but we’re not ready to count him out without giving him a chance.
We also learned the following things from the cardiologist:
- David’s aorta seems to be attached to the right ventricle instead of the left (we knew this before), but learned that it is called double outlet right ventricle. It doesn’t change treatment at all, but it’s another thing we’re dealing with.
- We asked about organ donation, and it sounds like due to the circumstances, he is not a candidate for organ donation. There is a possibility of his corneas being accepted. We then asked about whether his organs could be used for research purposes. It sounds like they may use his heart for teaching purposes, but as the cardiologist say “that’s a conversation to have IF we end up in that situation”.
- The MRI we had last week was able to diagnose the Nutmeg lung, but it is unable to show the severity of it. So that will be something that will be assessed after birth.
- We have a glimmer of hope. Our cardiologist found another article where 1 out of the 9 babies with Nutmeg lung, did survive a heart transplant (unlike the 0% article she found last week). However, that child received a heart transplant and was not followed anymore, so it’s unsure how long it lasted. I had also found an article where a child with nutmeg lung survived past 5 months (this was 2 years ago, no clue how they are doing now). The odds are very slim that David will make it past 5 months, but miracles have happened and has given us some hope.
The rest of the day we had an OB appointment with the OB who will likely deliver David, then an ultrasound to check his growth. His femur growth has slowed, but everything else looked good. The highlight of our appointments that day, was getting a tour of the CICU (Cardiac ICU), where David will spend his hospital stay – he will never spend time in the NICU. During this tour, we met the service dog, Fern. I’m sure David will love to meet her!
Our next visits are scheduled for tomorrow where we will meet some more of David’s care team – mainly the surgeon, the single ventricle team, and the cath team.
I don’t know God’s plan or Grand Design in life. There is something important in David’s life that we will be searching to find throughout our life. I do believe in miracles, for our very being is one. Keep your faith for God is with us. Love One Another, for there is no greater power than Love. I love all of you so very much! May God Bless you and touch you forever! Dad
This is a family of fighters. I’m sure David will be one of them. My prayers are for all of you! Love, Grtandma
Jess, my prayers continue for you, Adam, Eli and Anna — and especially David. If you are able, could you provide a couple sentences about Nutmeg Lung? When I tried to look it up, the sites I found and the “medical-ese” were impossible to decipher.
Great question – and honestly, I’m not sure that Adam and I fully understand it. We know that it is caused by the blockage so that the blood builds up in the lungs and has nowhere to go. This causes those vessels to become enlarged and the lungs to not develop the way they normally would. The blockage in the veins and lymphatic system of the lungs which causes an abnormal dilation of the lymphatics draining system (I believe this is what nutmeg lung is – it is also called pulmonary lymphangiectasia but I’m never going to remember that). The lymphatics system helps to maintain the fluid balance in the body by collecting the excess fluid from tissues and depositing it in the bloodstream, but in David’s case, his body and lungs in particular, will now have trouble with fluid drainage. When we spoke with the different members of the team on Friday, I know they want to avoid surgery and cutting open David’s chest, if at all possible, because all the excess fluid will be difficult to manage.