Last week was a wave of up and down emotions. One day Noah was doing well, and the next he wasn't.
On top of all this, I decided to not return to work. It was a pretty easy decision when I received the email letting me know that if I couldn't return to my full-time position this week we would need to "separate". This wasn't much of a surprise. They have been pretty difficult throughout this process, to the point of me having to sign papers and release my medical records to HR while I was pregnant. It was a breath of fresh air the day I let them know I wouldn't be returning. Noah's health is the only thing of importance to me right now. Unfortunately, many people just don't get it unless they are right dab in the middle of this nightmare of a circumstance, or have kids of their own, or.. have a heart? I'll stop there.
Our insurance company immediately accepted the transplant workup so the process was started on Friday. Every day the transplant team has been collecting a lot of blood from Noah, urine samples, swabs, etc.
On Friday we were handed a big binder "Texas Children's Transplant Services" on the front, a lengthy table of contents and told this was our homework for Saturday. To be honest, the last thing I have wanted to do this weekend was open it. In my head and heart, we just aren't there yet. But we sat there, in a conference room in the ICU, with three heart failure doctors going through what comes before, during and all the possibilities and complications after a heart transplant... things were mentioned like...the average life expectancy is 15 years after getting a heart, the anti-rejection meds that can cause cancer, and how if we didn't want to go this route, then we don't have to. The pit in my stomach that thought gave me.
Brandon and I somehow held it together, but we didn't ask questions, we wanted this meeting to be over asap..and when they left that room, we hugged each other and let the tears flow. I looked at my reflection in the window. Tears rolling down my face on to Brandon's shirt- How are we going to conquer this? Why is this happening? When will this bad dream stop? We agreed that we didn't want to discuss it anymore... I know that one day, maybe soon, we might need to know all this information but today... we just weren't ready.
I have hope that Noah will thrive after the Glenn.
Saturday we received a visit from the surgery team letting us know that we have a GLENN DATE! Wednesday... the surgery is WEDNESDAY. We signed all of the consents, listened to all the scary things that could happen, but we have no other choice right now, Noah needs this. The attending came by today to let us know that they are anticipating having a rough recovery due to his heart function, coming off bypass might take longer, and that the first 24-48 hours will be rocky... We are ready for this to be behind us, but we aren't ready to see our little Noah not smiling, intubated, and possibly with an open chest.
Noah will go back to surgery around 7 am and will likely take around 9-10 hours depending on what all needs to be done. His surgeon will take a look at Noah's heart in the operating room and determine if there is any further repair that can be done to his tricuspid valve, the arch, or his Pulmonary Arteries. We know based on the CT scan that his left pulmonary artery is narrowing, super common in this condition and can be addressed during the surgery and ballooned.
For a refresh on the three-stage surgery please visit my previous post: Hypoplastic What?
Based on the echos, the tricuspid valve repair remains the same but as we have learned, echos are not perfect. If he does want to make another repair, he will need to completely STOP the heart. Remember, this repair was already done during Noah's Norwood, it's mind-blowing what this little red-headed boy has been through! Yep... I said it. He is a full-blown GINGER in the back- not strawberry blonde... RED! Brandon is still in denial and keeps joking that he will dye it. I, on the other hand, can't wait till he has a full head of red.
Saturday night we were feeling hopeful, scared of that Wednesday morning where we have to hand over our baby boy, but hopeful.
God has had a way of working and placing many things in our path along this journey since we received Noah's diagnosis. A few weeks ago I met a sweet, very pregnant, woman in our apartment building, Monica. She started asking me questions about labor and Noah ( I had him in his stroller at the time). I told her briefly about his heart condition, and she mentioned that she's living here temporarily to deliver her first baby but is a high-risk pregnancy due to her health issues. It was a quick conversation and we didn't go into detail but a couple of weeks later, I would run into her and her husband coming out of their apartment. They lived right across the hall from us. Mind you, our apartment building has 35 floors.... so the odds that we were both even living on the same floor, let alone right next door are very small!
She told me that they had been praying for Noah daily, and their churches from home are praying as well (they are from Honduras). Saturday evening B and I were leaving our apartment to go to the hospital for the night, we ran into her in the hall. She told us that she had a gift for us and they would be going back to Honduras early in the morning. She began telling us about her accident and the significance of the sweet gift she would soon hand over. 3 years ago she was in a very serious car accident in Honduras, breaking 9 pelvic bones... she died and came back to life later at the hospital. She was bound to a hospital bed for months and would live in Houston for the next year getting over 8 different surgeries. She is a walking miracle. Although she lives each day in pain, God has seen her through her trials and has made miracles happen. Most recently, giving birth naturally to her first healthy baby girl!
As she grabbed the gift, she held a statue of Virgin Mary and a rose. During the minutes that she had died, she had seen a glimpse of Mary with her. She had this statue and kept her throughout all of her surgeries, and she knew that Mary was looking over her. This exact Virgin Mary statue has traveled the world, helping people during their biggest trials, one being a little boy who was fighting Leukemia. He accidentally dropped her and cracked her. but she is perfectly glued back together and that crack makes it even that more special.
Monica has been praying for Noah, and in her heart, she felt that Mary wanted to stay behind and help Noah fight this battle and show us a miracle. When he is better, we will give Mary back to Monica so she can continue her journey.
It was not a coincidence that Monica lived right across the hall from us, or that we ran into her right before her departure back home. We needed that reminder. That He loves us, He loves Noah, and He will deliver. We just have to pray and have faith. We placed Mary in the windowsill right near Noah. How grateful we are that she wanted to be here with our sweet boy.
There is so much uncertainty and my heart physically is aching for Noah.
On Wednesday, we will pack up our room in 1809, load it on a cart (standard for when your baby is in the OR) and wait with our friends and family on the 3rd floor. We will get updates hopefully every 2 hours. If you are around that day, feel free to stop by, come sit with us to chat or say a prayer, we will need all the distractions possible.
I will keep everyone updated the next couple of days and on the day of the Glenn, I will post updates as they come. <3