Updated: Aug 21, 2019
The day after Noah's surgery, the cardiologist here at Texas Children's who really had a huge impact on our decision to come here, gave me a call on my cell. She is out on maternity leave herself so I hadn't seen her since our first couple appointments here, however she did get the call when we had our last fetal echo (July 2nd), that Noah's heart function was decreasing and his leakage had worsened.
She told me she had been praying for us everyday and coming from the top cardiologist here, meant a lot. It was brought to my attention that if Noah's condition had remained the same or worsened out of utero, it would have potentially disqualified him for the surgeries. She reminded me that fetal echo's are not perfect, so when Noah arrived, the decreased function wasn't as bad as they thought, and he was still eligible. It was just a reminder of how thankful we should be, even though this journey sucks, it could be so much worse.. and we can't lose sight of that.
Thursday was a big day with a lot of "what ifs" but we also felt a sigh of relief that the day was here, and hopefully Noah would be feeling a lot better soon.
It was a "waiting game" towards the end of my pregnancy as we were reminded, over and over, that we wouldn't know everything until Noah arrived. Then when he arrived, we would need to see how he would handle his anatomy.
The anticipation and anxiety around that was a lot to handle, now he is here and getting the Norwood, it's kinda like starting all over again. We wouldn't know how he would handle his new "set up" until that time was here! Noah and this journey has taught us so much in such a short amount of time. Patience is a trait we both (B and I) never had, but here we are, learning to take everything in, the good and the bad, and not rush Noah's recovery. Everyday we have a goal to reach, and each big or small step in the right direction is another milestone that we celebrate.
When we received the diagnosis, part of me felt that maybe the last 15 years had prepped me for the hospital side of this journey. With KHKidz, I had become accustomed to being in hospitals and around very sick kids. Of course, it breaks my heart seeing any child sick or suffering, but you somehow just remain strong in front of them. I was sure that I would be able to emotionally handle this, I had a lot of time to "prep" for what was to come. Man was I wrong. When I first saw Noah after his 10 hour open heart surgery, my heart literally broke and I couldn't control my emotions. I had to process everything that night and the next morning I was back at Noah's bedside, talking and rubbing his head, chest open and everything. You see past all the wires when it's your own baby, but this is way harder that we could have ever imagined. I have really struggled keeping it all together these last couple weeks, so I'm so thankful Brandon has been able to be here the entire time to lean on.
The remainder of the first night was overall positive with no big surprises which is huge. The nurses had to use the pacing wires once to control the rhythm of Noah's heart but this is not too uncommon directly after the Norwood. They have not had to be used again since then!
Friday, August 9th
Noah started to be more awake and trying to move. He had to be restrained to the bed and they kept him very sedated, since his chest was open, it was very dangerous for him to have any movement at all. The surgeon made a visit, and let us know that things were looking good and that if they remained stable, then we could get his chest closed Saturday morning. The nurse recognized that the right foot/leg was extremely swollen, so an ultrasound was ordered. The doctors discovered it was most likely a blood clot in his leg; another pretty common thing to happen. Fortunately this his pretty easy to resolve and throughout the night it had improved substantially!
Saturday, August 10th
Doctors came to our room and turned it in to a temporary OR at around 8 a.m.- It was chest closure time!! This is a huge step and let us know that things are definitely progressing nicely. Brandon and I went out for some breakfast while we waited. It took around 2.5 hours for everything to be complete, and the next 12 hours after the chest closure are critical due to pressure changes in the body.
Overall, Noah did very well to the change, he is such a trooper. In the evening, Noah started to wake up and hear our voice, and he opened his eyes! It was the first time we saw those big blue eyes in awhile, and it was such a good thing to see. He is very confused, and does not like the breathing tube (intubated) at all (who would?). He is unable to cry while intubated, but he still makes the face so we know when he is upset and try to console him as much as we can.
His God Parents, Robin and Dave came to visit and brought some Holy Water where we said a prayer and blessed sweet Noah!
Noah was still heavily sedated and overall it was a peaceful day and rest of the night.
Sunday, August 11th
Another BIG day with lots of positives. Three lines were removed! We are happy to see less and less wires on baby boy and getting us closer to getting extubated (no breathing tube!!).
The following lines were removed:
UBC line- this was the line that was put in his umbilical cord right after birth and essentially acted as an IV line, but through his belly button Now he has an Atrial Line, so the UBC is no longer needed.
Foley Cath- this was inserted during surgery for Noah's urine output. Noah has been peeing just fine so this was removed and now we are back to changing diapers- totally not complaining though!
Arterial line - this is a thin catheter inserted into an artery and it monitors realtime blood pressure (instead of having a blood pressure cuff which can be intermittent and indirect). The doctors and nurses can also obtain samples for arterial blood gas analysis (ABG) and this measures the acidity, oxygen and carbon dioxide in the blood from an artery which tells us how well his lungs are able to move oxygen into the blood and remove carbon dioxide from the blood. They have been happy with Noah's ABG's thus far. He had two Arterial lines after surgery, so they removed only one.
We also got the go to start tropic feeds (with my breast milk) so one of the tubes that was in his stomach getting the acid out, was removed and replaced with an NG Tube for feeding. Tropic feeds help the stomach get used to food again so we start slow, and work our way up until he can hopefully soon eat from a bottle or breastfeed again!
Noah woke up a couple times, but he is on quite the meds for pain and sedation, so he is very out of it and delusional when he is awake.
Talks of extubation were on the horizon, which we are so excited about but we don't want to get our hopes up too soon!
As the evening approached, I asked when I might be able to hold Noah, and was surprised when she said, "now"! It took 6 nurses, and lots of maneuvering, but we did it. We were given 15 minutes to hold and the doctors had to stay there to watch but it was the best 15 minutes we have had post surgery.
The night was very calm- no surprises :)
Monday, August 12th
Doctors woke us up bright and early at 7 am to remove Noah's PD (Peritoneal Dialysis) chest tube, which is another big step. The PD chest tube is a cath located a bit above his belly button that absorbs the waste products from blood vessels in your abdominal lining. Noah had to be very sedated for this so he has been coming out of if the past couple hours. We had to wait for a few hours for the sedation to wear off and then we got EXTUBATED. This is a huge step, and Noah began breathing on his own and was much happier with the vent out. Now that he has that out, we switch the meds from fentanyl to morphine for pain management, which typically in these kiddos needs to be weaned. This evening has been rough, with trying to figure out if he’s upset due to pain, or just mad at everyone!
Thank you all for the prayers and love. We are so blessed and thankful with how Noah is pulling through this.