Updated: Nov 21, 2019
Monday and Tuesday we made huge progress.. By Tuesday morning we had EVERYTHING removed (chest tube, intracardiac line) and off ALL drip medications (milrinone, etc.) and he was headed in the right direction. It was nice to be able to pick him up again.
He just had his central line and the normal leads and NIRs on his head. Like what!!! Amazing progress.
This journey has been far more difficult than I could have ever prepped myself for. When pregnant, I kept telling myself..just get through this pregnancy, we won’t know everything until he is here. I mourned the loss of the healthy baby I dreamt of when we received his diagnosis. I prepared myself for the worst, unsure if I would even get 24 hours with him, we told ourselves… anytime with Noah, will be a blessing.
And that it has been.
More than we could have envisioned.
But it’s been hard, so so hard. I have moments that I’m not sure I am fit for this. Moments of guilt, did I cause this?
When the days are bad, it is like a cloud of darkness hovers over you and you can’t see the light.
I need more time.. I crave more days, months, years with Noah.
So after the Norwood… I kept telling myself.. just get to The Glenn. Everyone says that after The Glenn, things return to somewhat “normal”
But here we are and that's been anything but the case.
Noah still hasn’t been himself, and I haven’t been able to crack a smile from him since before his Glenn. Every time he wakes, he’s crying in pain. It’s so difficult to see him so upset and not know what is hurting him. We feel helpless. Selfishly, I feel like I am grieving the sweet smiley boy that I once had before the Glenn. But he’s here.. and he’s a fighter, and I know it could also be way worse.
Monday we didn’t hear anything from the Transplant team so I requested an update and Tuesday was delighted to hear that it was ON HOLD since Noah was doing well off the milrinone. To me, that meant we get to go HOME HOME soon. I, of course, called Brandon immediately, so excited, letting him know, we will be home for Christmas!!!
I do this a lot. I receive just a sprinkle of hope and I focus ONLY on that- it’s good sometimes, it gets us through some of the weak moments… but it can send me crashing down when we have a setback and plans don’t go accordingly. He reminded me to not to have expectations.
Noah had just gotten his chest tube removed Tuesday morning when the code sirens began to go off for our ICU neighbor. I didn’t personally know her, but my heart aches every time I hear that siren, and then those cries from a mother that just lost her baby. It’s not fair. It makes you angry, it makes you question everything.
Another heart mom that I have become close with (we met while we were both pregnant with our heart babies) met in the hall.. crying, saying prayers, wanting to hug that momma that just lost their sweet baby. It’s just not fair. We were reminded at that moment- just how precious each second, minute, and the hour is.
Due to Noah’s still collapsed lung, he had to get a bronchoscopy done where he was intubated and sedated. The pulmonary doctors went in with a scope that had a suction mechanism attached and cleared out some of his lungs. I watched the entire procedure, which was pretty cool- when it's not your baby.
He had a lot of mucus and they removed a mucus plug so they were hopeful that his lung would expand pretty quickly after this. They extubated him right after the procedure. Noah was still very much out of it. He had 3 more X-rays over the next few hours which showed that his lung was still collapsed.
I left the hospital that evening for a couple of hours when Brandon text me and called letting me know that I needed to get back immediately because they were talking about Intubating Noah again.. wait...what? I ran to the hospital.
Noah was very agitated and letting out a screech, literally a scream, that I have never heard before. He was inconsolable and when we finally got him calmed, his breathing was not normal.
Every few days, the attending and fellow for the floor changes. And every shift 7-7 there is a new attending and team. This night it was the first time we had worked with this attending and fellow and we were not seeing eye to eye, so we requested another floor attending come to get a second opinion. In a perfect world, I was hoping we could get Noah stable until the day team was present. Of course, it was difficult for us to have people we have never worked with before making decisions when Noah was in bad condition. Luckily another attending came who we have known for months, and we trust him with everything. He knows Noah well and it just gave us some peace.
We decided that we needed to sedate Noah, get him comfortable and see his numbers were when he was calm and if his breathing settled. Luckily we did, he calmed down and slept until about 330 AM. Then the nurse changed his diaper and he freaked out. I tried for about 30 minutes to console him with two nurses but then I took a look at his color, he was GRAY. I let them know that I wanted to call the attending that we knew from the other floor immediately. He ran down and after running a blood gas on him, there was an indicator (lactate was 14) that he needed support, and he needed it now.
Over 20 people rush in- getting everything ready. Noah’s sats sitting at 50, you could hear his struggled breathing/grunting from across the room. The attending let us know that his heart could stop during this emergency intubation. STOP, STOP STOP. We didn’t want to hear that. I covered my ears and head with the blanket, I wanted to escape this bad dream.
Brandon and I sat in the corner, crying, feeling like we couldn’t breathe. The flashes of the neighbors we have lost. The flashback of last week when Noah had to be rushed back to the OR. It was too much. And I won’t lie: I couldn’t get what the attending had just said out of my head, and the thoughts of what if… how would we ever live without our sweet Noah?
They gave us the option to stay there. We sat on the bed, not able to do anything but just watch… One of the other attendings told us, “If this was my baby, I would leave the room, you don’t want to see this”.. So we did.. We walked the hall of the ICU and we went to the family room. I threw up in the bathroom, my stomach in knots. Brandon with his head in his hands. We couldn’t believe how quickly things turned. Noah is everything to us.
About an hour later, we went back into the room and they told us the intubation was successful. Noah lay in the bed in a paralyzed state, intubated, but looking much more comfortable. An echo was done, and more tests.
I laid down to get some rest and Brandon stayed up- watching Noah.
We took so many steps back last night. In a matter of hours Noah went from being off everything we had weaned.. to being right back on EVERYTHING; Milrinone, Dex, fentanyl, versad, intubated, NG tube…. The list goes on.. I’m of course upset, but I believe that Noah will get through this as well and home HOME is not out of the picture.
The morning was filled with getting more answers, meeting with about 25 different team members (seriously!!) and coming up with a plan with the day team who knows Noah very well. Right now, Noah's heart is looking the same, which is good news. His function is still moderately to severely depressed- and his regurgitation is moderate.
This news makes the team think that his lung and Chylous Effusion (he had this after the Norwood- you can read about it here) is the culprit. Noah will remain intubated until we can solve these two issues- and then hopefully, we can continue with his recovery. There are still so many unknowns.
Please keep him in your thoughts and prayers. He’s so tough and I remain positive he can get through this <3