It was so nice to be able to visit Nolan and see some definite progress on his part. While he was using an NG tube for feeds instead of bottle feeding, he eventually began breathing completely on his own, and the number of meds he was on was less and less. Soon we could hold him with the only thing being attached were his monitors. It occurred to me that this was the first time since NICU back in December that I had seen him tube-free.
The CVICU staff continued to be awesome: they would hold him during the day, and oftentimes I’d come in to find his nurse sitting in the recliner just holding him and talking to him. It was pretty special: I can’t continue to say enough about how great that staff is. They even had a mobile brought up to his room so he can enjoy the sights and sounds, and they brought up a bouncy seat for him too. It was like our son was moving from critical life to more normal life.
Eventually we began to try to have discussions with the staff about his possible discharge. Namely we wanted to know if they would discharge us right from the CVICU. We were told, though, that kids typically go to Progressive Care and are discharged from that floor. While it was nice to have the going-home conversation, it was kinda sad to know we’ve one day leave the CVICU and be under someone else’s care for awhile. Definitely bittersweet.
In the meantime, though, I kept coming in to see him and I would hold him (unless he was asleep or cranky) and we would talk about all sorts of stuff. And I never stopped calling him my hero…
Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU. This will always be an awesome moment for me and I’ll tell you why. Nolan wasn’t the best at bottle-feeding after birth. The nurses would give him about 15-20 minutes to complete a feed. If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds. As you can see in the photos, he had an NG tube in by the time these were taken. They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed. One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout. That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.
It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses. None of them. Sometimes, though, he would eat pretty well for me. And just me. I was definitely feeling the Dad love there! So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy. The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin. At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me! I tried to feed him as much as I possibly could because I absolutely loved that bonding time. I held him and he’d drink quietly and it seemed like all the problems would go away. It was a sweet time to be with my boy. And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…
My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down. So he knew me…we bonded…and it was awesome.