To be honest with all of you, the last four weeks of this journey were long and very short at the same time. It felt like our world went on for eternities but somehow we would find ourselves near the end of it time and time again. Like a marathon.
Lilly was growing so fast! She was gaining weight and hitting those regular developmental milestones quite fast. This seem to worry the doctors more than please them. They were noticing that Lilly was beginning to outgrow the NICU but there was something holding her back.
Spencer and I could NOT have seen this coming even if we tried. We had the idea that for some reason the NICU was the place for her to be “fixed”, and we were so wrong. Lilly reminded everyone in her care team that the neonatal intensive care unit could also be just a part of your treatment and not the entire process.
After many tests and therapy sessions, she was diagnosed with dysphagia and would need special care whenever she needed to eat. Technically, dysphagia is the inability to swallow without chocking. This means that her “feeds” had to be thickened in order for her to be able to eat safely. That also meant that breastfeeding was out of the question since breastmilk is so thin; thinner than water.
I was devastated. I always intended to breastfeed, especially since I was lucky enought to be blessed with an amazing milk supply. Pumping became my new religion.
Lilly’s feeding tube was also a topic for conversation and brainstorming on the provider’s part. They knew that she would have to go home with suplemental feeding and that the NICU was not very fond of sending babies home with anything but a “G Tube”, which is a surgically placed tube straight to the belly. Now, there are lots of other ideas that preceded the long feared G Tube, but the NICU providers were not very hopeful.
With the help of our great Speech team, who advocated perfectly for our little one, the neonatologists came to the conclusion that she was a good candidate to be discharged with an NG tube as long as she was seen outpatient by the same speech pathologists. Luckly, my husband and I have enough experience with medical matters and we felt so very comfortable taking care of her at home.
Lilly was discharged Nov 5th with a feeding tube that she had to use for only two weeks after she got home. With the help of her amazing speech team, her GI team, and the sweat and tears of her parents, she no longer needed her feeding tube and she graduated from therapy!!!!
Diana's Dailies 