Monthly Archives: December 2021

Well. Thursday, I had another doctor’s appointment. It lasted almost four whole hours!!!!! Another week down and another week chock-full of information. I left with more clarity, a tote bag full of books, and a lovely new heart murmur myself since I def have time for that. She wanted to check my heart because of my brother’s defect. She said sometimes siblings have the same one; one sibling is asymptomatic, and one is not. Arg. My guess is that the extra blood flow because of pregnancy is causing a bit of a murmur, but I tend to think nothing is wrong until something is wrong—an echocardiogram- another thing to add to the docket of to-dos. 

I met with my NEW doctor at Emmanual/Randalls Children’s Hospital. She will not be the one who delivers Amos. Sadly, I will never get to meet that person. Here is the breakdown of the information I received. 

 I am anemic, but no surprise there. I had my regular check-up, glucose test, routine bloodwork, etc. Nothing a little floradix can’t fix. I have been down that road twice before. The doc reminded us that with no detected VSD, Amos would be whisked away milliseconds after birth to be stabilized and then undergo a balloon septostomy. A BS is when the cardiologist begins by making a tiny incision in the groin to access the femoral artery with a catheter. Once this catheter is in place, a deflated balloon catheter is inserted into the first catheter and guided to the heart. A small camera inside the balloon catheter allows the doctor to see the heart on a video monitor, and a series of X-rays with dye and contrast are taken. Once the balloon catheter reaches the right atrium, it is passed through the heart defect to the left atrium and inflated. After it is inflated, the balloon catheter is pulled back to the right atrium, creating a larger opening between the right and left atria, enabling the oxygenated and deoxygenated blood to mix. After the balloon is deflated, both catheters are removed, and the incision is closed. 

Depending on how he does with the balloon, it’s my understanding he will be on the stabilization floor for a few days preparing for his extensive switch surgery. (More details on that to come-one thing at a time). I will be able to stay the night during his entire stay at the hospital, which is incredible. I would imagine I won’t just because Hank and Simon will need me at home, and I want to create some sense of normalcy for them. Thankfully Tyler will be available, and he is the BEST person for those boys. I received a photo tour of the space, and it is truly a state-of-the-art brand new facility. Sadly, Tyler and I are the only ones allowed to see him due to covid. All of his procedures and recovery rooms are within the same building. After showing me loads of pictures of the PICU, the NICU, and his recovery rooms, she briefed me on PPD (also not a new thing for me YAY) and assigned me a free counselor. Each mother is advised to talk to one since she will not only be seeing her baby covered in wires but seeing other children with heart conditions–even the same ones as Amos has but older and it could be quite triggering. Every doctor was gracious and loving, which is all I could ask for. I feel so grateful to be in Portland and for the multitude of available resources. 

This is how we pray going forward: 

-Amos would be completely healed. Before he is even born, his walnut-sized heart would be completely formed correctly. His life before even birth would be a sign and wonder that only could be explained by a miracle. 

-If healing on this side of heaven isn’t in the cards, then we pray for a VSD, a nice giant one that allows blood to bring oxygen to his brain.

-If there is no VSD, we pray for a successful balloon surgery with no infection, leaking, blood clots, or strokes. 

Here are my prayers for today—more for tomorrow. 

     I am 27 weeks pregnant, and life feels busier than ever. Tyler’s schedule is jam-packed, and weekends/well Saturdays have been left to hosting out-of-town guests for Bridgetown and completing tasks around the house. We have never been HOME owners, and sheesh, it’s a hefty list of never-ending to-dos. 

Last week we had our second official appointment with our cardiologist. I came fully prepared with questions that had bubbled in my brain from our previous visit. I have never felt more like my mom. I have a google doc on my computer of questions that I am determined to be answered before Amos is born.

     Overall, the appointment was underwhelming, which I guess is good at this stage. Dr. Tucker, Dr. Changs partner, did a full anatomy scan. She thoroughly measured his body, ensuring that his brain, femur, and stomach continued to grow—all green lights. Then did a thorough look at his heart. She could not detect a VSD ventricular septal defect, which they had been able to see a few weeks ago.  A VSD allows for some blood mixing and can lead to better outcomes. I was bummed to hear of the lack of detection, but Dr. Tucker assured us that the outcome could still be a positive one. She felt confident that the structures of his heart looked like they were in good shape for operation. To know the exact condition of all of the intricate structures, we will have to wait until he is born to see.