With the NG tube gone, Laura’s face was finally given a chance to heal from all the tape and she was starting to look much better. To say that it was easy to get up multiple times in the night, wake her, put her in her high chair and feed her milk would be a bit of an overstatement but it was the choice we made. We could have chosen to stick with the small amounts of milk and then top up with the NG tube at night until she could properly take a bottle but I really believed that Laura needed to get used to the sensation of quenching her thirst through drinking – no matter the form – rather than magically becoming full while she slept.
The second day that Laura was without her tube it took 15 feedings to get her 700 mls of fluid into her. 15 feedings means that she was eating, on average, every 1.5 hours – it was exhausting. By the 7th day, she was only eating 9 times in the day and by the last of the month she ate 6 times a day and we only did one night feed! I truly believe that pulling the NG tube and getting her to eat to feel full was the ticket in transitioning her. There were a few days when she didn’t reach her fluid goal but as long as she was within about 50 mls, it didn’t bother us too much. Of course, she still ate in a high chair with a spoon and soother which was a pain but life was definitely getting a little easier.
There was, of course, more to our lives than feeding Laura!
We went into the hospital for blood work and cardiology clinic once a week. We would go to the lab to have her blood drawn (she didn’t like being held down but actually did quite well because she had blood work so frequently) and then would grab a coffee from starbucks before heading to Pediatric Outpatient for clinic. We would give her meds before heading in and then we would be ushered into a room with an sonographer (person who does the echo/ultrasound). We would do everything we could to convince Laura to remain still so we could get clear pictures of her heart and then it was time for an ECG. Stickers went on, beep – picture taken, stickers came off – no sweat. We would then proceed to get a weight and height on Laura to make sure she was doing well off the feeding tube – she was chunking out rather nicely so, yep, she was fine. Then we would go through her list of medications and how her wean was going (she was off ativan and methadone and we were just weaning off clonodine – our little addict was soon to be clean and sober 😉 ).
After a while, the dietitian would come in to check on how Laura’s eating was going and give us tips on where to go with her solids and what to do to get her drinking from a regular cup (although she was still only 6 months old).
The cardiologist was last – we would talk about Laura’s overall health as well as her cardiac health and then go over next steps with medications. It was pretty straightforward and after a couple of hours, we would head home.
Developmentally, Laura was a little rock star. When we got home, the only thing Laura could do was sort of hold her head up when being held vertically and turn pages of a book – that’s it. To be fair, she was young to turn pages in a book but reading was really all we did when she was in hospital. By the end of March, Laura had full neck control, could bounce in her jolly jumper, could sit with support, could transfer toys from one hand to the other, could lift and throw toys and finally, could put weight on her legs! Within the span of 1 week, she went from not being able to put any weight on her legs to standing against a couch on her own – she is such an incredible little human.
She was finally beginning to fill out and look a bit healthier and we were able to take her to church with us and go grocery shopping without worrying too much. The only difficulty was that every 3 hours we needed to get home to feed her as she would only eat in her high chair. At church she would eat in her carseat in a dark and quiet room but that was about as good as we could do 🙂 We were beginning to settle into our new normal once again and it was actually beginning to feel a little more like a normal baby experience.