Updated: Nov 18, 2019
It has been a question that I have asked myself over and over and over again in my head the last couple of days. Did I miss something? Was there a sign that I let slip through the cracks? Since we have been home, I have tried to not let every little thing freak me out, but I'm not going to lie, I call our on-call cardiologist at least a couple of times a week to make sure something isn't abnormal. We love being at home with Noah and have enjoyed him these last few weeks. He's developed so much and thrived at the "Houston home". The thought of getting readmitted brought some feelings of PTSD and I wanted to do everything in my power to make sure we were hitting the goals required by the Single Ventricle team for that not to happen, especially over something like feeding/weight gain. Of course, I want Noah to be safe and if that is back in the hospital then albeit.
Last week we had our weekly single ventricle appointment with the team on Wednesday. I was nervous about this echo since the previous two echos had shown moderately depressed function, the team wanted to keep a close eye on it to make sure that it was not continuing to get worse.
We were relieved to hear that the function had remained stable, and had not gotten worse.
Noah's average weight gain per day did slow down, even more, so the doctors decided to go up on the fortification on his breast milk to 27 k cals, which is a lot. Noah's belly didn't like this change at all and I found myself covered in puke that first night we adjusted his feeds!
My mom was able to come into town for a day from Florida and help me with Noah and house stuff since Brandon was out of town for work. Of course, we love visitors since we are very secluded right now, but we really have to limit friends/family wanting to come to just visit, due to the cold and flu season. When my parents come they come to watch Noah and are up to speed with his care, they make us get out of the house and get errands done, they do our laundry, and just the little things that honestly are put on the back burner, but still need to get done! It's been so helpful and we are super lucky that they are able to fly over frequently.
Noah enjoys spending time with his Nahnee, and I enjoyed the "break" aka taking a shower uninterrupted! Noah loves outside so we took advantage of the beautiful weather and walked from our apartment to the Zoo, which we had all to ourselves!
Brandon got back in town late Thursday and my mom had to leave to go back home. Friday morning was just like any other morning, Noah was his smiley self and his numbers (Heart rate and Sats) were his norm and nothing looked out of the ordinary. We received the sweetest box from our neighborhood back home, filled with the most thoughtful gifts, cards full of encouragement, prayers, and love- I read each one of them out loud to Noah!
Brandon had to run a couple of errands out of the house that morning, and I had a work meeting in Houston scheduled for the afternoon so I was trying to get his meds done a little early so B wouldn't have to worry about it. I was giving Noah one of his medications, and he doesn't like the taste of it so he typically makes a coughing noise.. but this was different. He started, what sounded like aspirating, over and over. He turned purple and didn't breath for a few seconds, I did what the hospital taught me to do if he was to ever choke. He finally was able to cough up a lot of mucus. I thought that maybe that was all he needed to cough up, but I was freaked out by the episode so I grabbed my phone to page our on-call cardiologist immediately.
While I was doing this, Noah started having another one of these "attacks".. He would eventually cough stuff up, but his color was not good and I knew something was very wrong. I immediately called 911, grabbed him, his single ventricle folder (with the Ace of Heart Card) and ran... I ran down the hall and while in the elevator, lost 911.
When I got into the lobby of our apartment and the concierge knew something was wrong. I told him I needed to get to the ER immediately. I knew that running there would be my fastest option. He pointed me to a car outside and we hopped in and he drove me across the street. I ran with Noah in my arms, from Legacy tower, up to the 3rd floor that connects the 4 buildings at TCH and a doctor noticed that something was wrong.. Didn't even ask questions, just grabbed my things and ran with me to the ER which is in another building and floor. I have never, ever, ever been so terrified before.
We waved the Ace of Hearts card to the ER check-in and went straight back to a trauma room. At this point, the single ventricle team was paged and before you knew it, there were 15-20 people in and out of the room. Noah was breathing, but his sats were sitting in the 50s so he needed oxygen. His sats went back up to his normal 85 pretty quickly and I sighed a huge relief because my baby was breathing and okay but I sat in the room, in tears while I held him, with a wave of guilt hitting me. Did I give him his medicine wrong? Too fast? Did I cause all of this? Man, the guilt was intense. Brandon arrived at the ER just a few minutes after we got there and the doctors started doing an echo.
We had just had an echo two days prior... surely there couldn't be any significant changes...right?
Wrong... The doctors let us know that his Tricuspid Regurgitation had gone from Mild to SEVERE... In two days? How? Why? NOOOO...
They also ran blood work and his BNP (this level is typically elevated when a patient is in heart failure) which was previously 80 when we were discharged, was now 1,900. This means this heart was working extra hard. Before we knew it, we were back where we started... in the CVICU on the18th floor: Neonatal Cardiac Intensive Care Unit...
We knew that an early Glenn was going to be necessary when the function started decreasing, but Noah's heart is showing us that he is needing it much earlier than we expected! The doctors explained that this is probably why he had the choking episode, and if I wouldn't have brought him in, who knows what would have happened.
They started giving Milrinone immediately which is a medication that helps with heart failure. They also inserted a PICC line (is a thin, soft, long catheter/tube positioned in a large vein that carries blood into the heart and is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws) in Noah's left leg. The previous PICC line that Noah had after the Norwood, gave him a clot in his right leg which still hasn't gone away and we have had to give him two shots of Lovenox a day for the last 11 weeks. We were anticipating getting off Lovenox November 5th, even since the clot has not resolved, but now, he will need to remain on the shots until he no longer has a PICC line to ensure more clots do not form. The needles used in the hospital are much bigger than the ones we were getting at home, so it's difficult to see his legs bleeding so bad after the shot, when we have a better option... and I have been very vocal at advocating to get the needles changed for all these babies. If there is an easier option... then why are we doing it for all the babies???
I, of course, was "That Mom" last night and brought our Lovenox shots from home and gave him the shot myself last night since the nurses couldn't get smaller needles in time for his night dose. This was not "allowed"... but whatever..... today they are working on getting smaller needles so they don't have to listen to me complain anymore ;)
But seriously, moms and dads to sick babes.... if I can give one spiel of advice....you HAVE to advocate for your baby.. You have to do your best to be at rounds, asking questions, taking notes, and voicing your concerns and opinions. The first couple rounds are intimidating and they use a lot of terms you might not understand yet, but by week 3 you'll be a PRO and using all the medical jargon ;)
Noah has had two blood transfusions this week which has also helped him feel a bit better. His BNP had decreased from 1900 to 900 on Sunday but Tuesday, the BNP shot back up to 1,500 so the doctors increased his Milrinone. Unfortunately, it still hasn't gone down.
It's been frustrating hearing all of the doctor's opinions on Noah's heart, and if the Glenn is the right option. Our surgeon is currently out of the country and will return this weekend and hearing his opinion his really what matters. I have struggled this week. From being home and able to hold Noah all the time, to now I can barely pick him up at all. I am amazed every day at how strong he is. How he still smiles even during these tough times.. he is STRONG, these babies are so, so strong!
I feel like I missed something. How did I not know something was wrong with him?? We were being seen weekly, how did things change so fast? Will it always be like this? Will we ever be able to breathe and just be at peace because we know he is okay! My mind has been racing, and I have hit my rock bottom. I would give anything, to trade places with Noah and take his pain away!
I have found myself going down the rabbit hole of what-ifs, and pleading for the doctors to give us a little more hope, not just worse case scenarios. Some days I feel like I can hold it together, but most days, I simply can't. Brandon and I are not perfect, and we are feeling the burden of this and the many unknowns.
We have been very lucky to have met some great families that are also going or have gone through this, that have lifted us when we have simply felt like we can't on our own!
Pray for Brandon and me to find strength in each other to get through these tough moments so we can give Noah 100%.
Noah got to dress up as an elephant for Halloween and even had a special visitor! He also just had his 3-month "birthday"- we celebrate all those little milestones around here!
Noah will have a CT scan which is needed before the Glenn surgery. It's been a rough morning trying to get an IV in him for the CT which they need to inject the contrast. Finally, after the 5th try, and a bolus of morphine due to his heart rate sitting in the 200's, they were successful at getting an IV placed and they just wheeled him back to get the imaging. This will give the surgeon the information that he needs in order to move forward and discuss the Glenn.
Once this is done, and our surgeon is back, Noah will be re-presented at the Heart Center Conference (Where the entire team, all 40+ cardiologist, all surgeons, etc, get into a room and discuss each patient and their plan of care!) on Monday (hopefully). If the team feels comfortable moving forward with the Glenn, he will be having surgery as early as next week! He will also need to have his tricuspid valve repaired during this which makes his case a little more difficult.
We are praying that his CT scan gives us no surprises. That the Glenn will be successful and will help his function improve overall and that he will get to have some normalcy and be out of the hospital until his next surgery, the Fontan.
We appreciate each one of you SO much. The prayers, the encouragement, the meals, the sweet "Notes to Noah".. We are blessed to have a strong community standing behind us, lifting us!