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Accepting the Unknown.

Updated: Nov 18, 2019

What a week. I enjoyed not having a lot to talk about the last month because things were going pretty smooth. Crazy how things can change in an instant.

Last Friday night Brandon and I went on a date night. It was nice to get out of the hospital for a couple of hours and have a nice dinner. It's funny when people say "you have free babysitters right now".. we are nearly 2 million dollars in with TCH so I wouldn't necessarily call that free ;)


Date night- he is too cool to smile

But no, we get it..We know he is in good hands at TCH, and one thing that we promised each other is no matter how difficult this got, we would take time to care for our relationship. Of course, we are probably those annoying, overbearing parents, that call the nurse every 30 minutes asking what he is doing. But it's a must to get out of this environment sometimes. This situation is so emotionally draining. Every day is a rollercoaster of ups and downs. So it was good to spend some time together just talking, without the beeps, or a nurse/doctor walking in every 3 minutes.


Holding his rattle for the first time

After Noah's blood transfusions, he was feeling good and all of his numbers looked great. He started eating like a piglet! He has been taking everything by bottle still, which has been a big sigh of relief. Typically he eats around 600 mls a day, but over the weekend, he was hitting 700s and even 850 mls one day! I didn't realize how much I have been stressing about feeds these last few weeks. Heart babies and feeding can be the most frustrating thing, and it's taken a lot of patience. At home, it was SO important that Noah was hitting his goals, and every day I was obsessing over it, I didn't want it to be the cause of us being readmitted again, but I also knew that in heart failure, the first sign in babies is a dip in appetite. It was such a relief to see Noah taking his bottles so well and the ICU team was proud of how he was doing.


Big Smiles

Even though he was doing relatively well over the weekend, Saturday was a tough day emotionally for B and I. In the evening, our ICU neighbor coded. The glass door between our room and theirs have blinds that were open since we were sharing a nurse. The mom standing in the corner in tears, and the dad in the hallway. For nearly 30 minutes the team worked on her, running in an out of our room grabbing supplies, unfortunately, sweet baby gained her wings. The mother's screams and cry was the most heartbreaking sound. We couldn't imagine the pain that the family was feeling and Brandon and I couldn't hold back the tears. It quickly reminded us how fast things can change, and how blessed we are to have Noah here with us and to never take a moment for granted. Sometimes I can get into a funk of sorrows as I see my friends post photos of their perfectly healthy kiddos and complaining about not getting sleep, oh what I would do.. But I know there is a momma out there that may have lost their baby and would do anything to even be in our situation, able to hold, play, and just have more time with their baby... We went to sleep that night with a whole new perspective.


Sweet Boy

Sunday was status quo! Monday was the day that we were looking forward to. We would have more information since Noah's surgeon was back in the country and Noah's case was being presented to the Heart Center bright and early. We were anticipating that his Glenn would be scheduled this week. It's a strange feeling.. Praying that your baby can have this surgery... but of course, we don't want him to go through such a scary thing, but we were just ready to get there and past it!


Rescan for Blood Clot

The team met Brandon and I that moring in Noah's room and let us know the decision that was made. At this time they felt it was in Noah's best interest to wait 2 more weeks in the ICU, where he will remain on Milrinone and be closely monitored, while he grows more and his lungs become more mature. They also had hopes that his heart function would improve with the milrinone, making him a better candidate for the Glenn. Then in 2 weeks, we will reevaluate his case.


Family Photo by the Volunteer Photographer in the ICU

There are a few things about Noah's case that his making it more difficult. His Tricuspid Regurgitation is SEVERELY leaking. This was already repaired during the Norwood, and the repair is still in place, meaning that there is no further repair that can be done. This also means that it is likely that his leakage is getting worse due to Noah's moderately/severe depressed function getting worse.


The fear from the team, well there are a lot. Noah will go into the Glenn not an ideal candidate, and with a depressed function. The Glenn can not repair his function. And his body will be attempting to recover from a huge surgery, with a poorly functioning heart.. and the outcome may not be positive.


Care Package from a Sweet Friend

Of course, Brandon and I asked a ton of questions...what if he gets worse these next two weeks? What if he then is not a candidate for the Glenn?? We are out of control.. and it's scary, it's frustrating, it makes us go crazy. All we want is Noah to be well and at the end of the day, we have to remember that they do too.


We also had a rescan for the blood clots that Noah has been on Lovenox (Sub q shots) for the last 12 weeks. We were shocked when we found out that they were gone and we could stop the shots, this was really good news! He will still remain on Heparin, since he has a PICC line and we do not want another clot to form.


Serious Face!

Tuesday and Wednesday things started to take a turn. Noah was no longer wanting to eat, and getting very tachycardic (high heart rate) and pulling away from the bottle. He also was having some tachypnea (fast breathing). He was hungry but he was not able to sustain the energy to keep going. In a 24-hour period, he took only about 9 ounces, when he typically he is taking around 25. The doctors let us know that we would have to place an NG tube in again for feeds and give his heart a break. If we keep pushing him to eat, he could go into cardiac arrest. So the NG tube was placed back in- and he hates it, but we know this is what is best for him right now.


In addition to him not eating, his numbers have begun to change too. Higher heart rate, decreased NIRS ( a technology that monitors the oxygenation of the brain and kidneys, aka the sticker you always see on his forehead, and he has one on his lower back!)... all signs of heart failure... Since of course, this wasn't the plan (pushing back the Glenn for him to get worse).. the team is now reevaluating.


This is an everyday struggle....

Brandon was supposed to fly out for work but his flight was canceled. THANK GOD. That was not by coincidence. The Heart Failure/Transplant team was called in and met with me. I listened, keeping a straight face and Brandon walked in as they were here.... Telling us the evaluation process, being listed, the wait times, and then all the other things that come after a transplant...This will not FIX Noah's heart and will be trading one set of problems, for another, and a "good heart" only lasts for 25 years. It was way too much for me to process. I cried, slept, then cried some more. I am glad Brandon was home to help with Noah when I needed to just take a step back and reflect. I've found my self asking Brandon, "will everything be okay?".


Hanging with friends :)

It's hard to remain hopeful when all you hear are the "what ifs" worse case scenarios. Brandon did have to fly out for work early Thursday morning. Noah's heart rate continued to get higher, and his NIRS dropped the lowest we have ever seen them. I got sassy during morning rounds.. I wanted answers, I wanted a new plan, I wanted it NOW.

The team is phenomenal here.. the best of the best, and even when I don't know it- they (all 100+ of them) are constantly watching Noah and figuring out the best plan of action minute by minute.


He loves to hug his teddy while sleeping.

We are waiting to get more answers but today, Friday, the transplant team has started the process to begin the evaluation for a heart transplant so that Noah is ready to be listed asap if needed. The process is not as simple and straight forward as it sounds and these first couple days we have to wait for insurance to approve...there is a lot of tests and requirements that need to be met for Noah to be a candidate, which I will post in a later blog.

Despite Noah's heart failure status on paper, and when you look at the echos.. he is still looking beautiful and smiley.. and he amazes us daily. We are so proud of him for how far he has come, and we have faith that this isn't the end of his story, but only the beginning.

For now, we ask for prayers, lots and lots of prayers. That Noah's body is just telling us he needs the Glenn, and that his function will improve miraculously after this surgery.


7 Cast all your anxiety on him because he cares for you. 8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. 10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."

Thank you to everyone for following our journey. I know sometimes it can be depressing, but it's the reality of this journey and I am choosing to share it all.. it's scary, filled with lots of unknowns but I appreciate everyone's support through both the ups and downs, for the meals that people have sent to the hospital and the gift cards that have been so helpful, for the sweet cards that give us encouragement..right now we are not allowed to have any visitors, so the sweet gifts and letters help us not feel so isolated! We thank you all.

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