October 27, 2023

We have had our final appointments before David’s arrival now. Last week we met with the neonatologist and a NICU social worker. They went over their role in the delivery, and warned us that the room will look like a sea of blue. The neonatologists will be the first ones to assess David after he’s born. They are hoping that his takes a couple deep breaths (or tries to), and then they will intube him as preparation for the cath procedure. They will also administer various medications and may also place his IV, or that may be left for the cardiac surgery team. However, I think most of the meeting was less about the procedures and their role and more about connecting with us since David won’t spend any time in the NICU and will be in the CICU instead. The NICU specialists will be consulted as various things arise, but the main doctors and nurses caring for him will be from the cardiac team. We didn’t know what to expect from that meeting going into it, but left feeling very informed and supported. At one point, the social worker asked us what keeps us going based on what we have been told about David’s body at this point. I can say it is definitely hard looking at the after summary visits documentation in my account when it says “poor prognosis”, but we feel like David has a tiny chance at survival and we weren’t going to deprive him of that opportunity. It’s a non-zero chance, and we’re not going to count him out. Everything I’ve seen online from other parents with a child born with a CHD, is that these children are strong and fighters and defy the odds all the time. 

Tuesday of last week, all the teams met and had a dress rehearsal of the delivery day to go over where everyone will stand and who will do what and when. I’m certainly glad to know they are trying to make sure everything goes as smoothly as possible. After meeting with my OB doctor on Tuesday of this week, I learned that one result of the dress rehearsal was that they came up with a plan for what would happen if I go into labor early. The plan is that I would deliver vaginally, which would give the cardiac team time to assemble or finish whatever things they were currently doing. Had I know that was an option, I may have been less likely to keep pushing to move the date up from Nov. 6th, since it would mean no c-section and therefore, no weight lifting restrictions and I’d still be able to drive. However, it is probably best to have it planned this way, and know everyone is well rested and ready to go, and not having to try to quickly assemble child and dog care. The goal is to try to stick to the 7:30 c-section time as close as possible so that the cardiac team has all their resources ready and available. 

Well, our cardiologist just called (she always seems to call on Friday around lunch with devastating news). It turns out if they cannot get through that first procedure to open up David’s septum, they will not pursue further options. We had been clinging to hope that if they couldn’t get through it, David would be put on ecmo and the surgeon would take over the procedure and have to open up his chest. It wasn’t ideal, but he would be alive. That is no longer the case. I am distraught at the moment with this new news. She said she just learned that herself, but it was apparently a topic of conversation during the dress rehearsal. Please pray that David is able to get through his cath procedure to open up his septum, otherwise we are out of options. She also said that after his septum is opened up, they will let his body adjust for a while before deciding the next steps – which are placing some flow restrictors to the lungs and/or a stent for blood flow. If he gets through the first procedure to open up the septum but is unable to continue, she said that does not mean those are off the table, but rather, will just need to be done at a later time. 

Assuming this first procedure goes well, we have been approved to have a photographer come in along with our kids to get some family photos. I’m not sure about other visitors at this time. David’s immune system is highly compromised, and the less visitors he has, the less chance of a stray germ causing him some harm. I’m not really sure how I feel about having Eli or Anna there with their germs, but I would love if we could get some family photos and give them the chance to meet their brother. They both love to come up to my tummy and give him hugs and kisses. We also have the go ahead to have our pastor(s) come down at some point and baptize David. 

Between now and Monday, we’re just trying to keep the kids entertained with positive memories. I wish it wasn’t going to be so cold this weekend, as I was hoping to take them to some trunk or treats and a Halloween hike through the woods with some candy stops along the way. We did that last year, and I really enjoyed it (and Eli enjoyed the tractor ride to the trail head). I also have to get our bags packed and make sure everything is in order to make the transition as easy as possible for the kids while I’m away from home. 

In the meantime, we would love any and all prayers and positive thoughts. For the doctors, nurses, and all medical personnel. For baby David, that he will be able to handle that first cath procedure like a champ. For our older kids, who will have so many questions and may feel a bit lost, and for us. I would like to thank everyone for their outpouring of love and support so far – it has meant so much to us and has helped keep us moving forward.