So life has been really hard lately. Not looking to spell out a huge sob story but I’d like to explain why dev has slowed down and I’m not appearing around as much lately.
Last July Mrs P and I welcomed our beautiful baby girl 5 weeks early. It was a difficult and unexpected birth, however other than a feeding tube being needed and some minor jaundice she was thankfully healthy. However what we thought was going to be a short stay in the NICU (Neonatal Intensive Care Unit) ended up being almost three weeks of leaving our daughter in the hospital over night while we went home to cry about the situation. The short story was, our daughter wouldn’t eat.
Otherwise healthy, she had 0 interest in taking a bottle and only got her nutrition via feeding tube. We tried everything. We literally spent hundreds of dollars on different bottles and many many hours working with her to figure out what we weren’t doing right. After almost three weeks in the NICU we were able to be discharged, but with the feeding tube.
It took close to three months to finally “beat” the feeding tube and have her taking enough by bottle to sustain herself and grow.
Three months of having to change the feeding tube ourselves, physically restraining our screaming child so that we could put down a new, clean feeding tube and fresh tape on her face to keep it in place. Let me tell you, this is something you never want to do. Ever.
The joy we felt at finally removing the feeding tube for good was short lived, as she didn’t really thrive with the bottle. This is already sounding like a sob story and I regret that, but maybe it will help to get it out. We’ve worried and stressed every day if she is eating enough to grow, and thankfully she’s stayed around the 50th percentile throughout but only because every feed is about one hour long, a battle, and because essentially we outlast her. This isn’t a way to live – spending 4-6 hours a day in a dark room with your daughter fighting with her to get her to drink a bottle.
She’s had zero interest in solid foods, and now that we are coming up to her first birthday we are confronted with the reality that was in front of us all along – our daughter has a feeding aversion as a result of the feeding tube and our attempts at getting her to eat all along. Now this isn’t insurmountable to resolve, but it is incredibly challenging. It requires behaviour modification to eliminate her anxiety around eating and get her to enjoy eating again. We are working with a specialist out of Australia right now and we are seeing some signs of hope, but it’s early days and this will be a long road.
Anyways, why am I telling all of you this? One, because if any of you out there are in a similiar situation or know someone going through the same thing I want them to know they aren’t alone. This is terrible, and there isn’t a moment in the day or night that Mrs P and I aren’t guilt ridden and crippled by stress and anxiety that our daughter isn’t doing well.
Second, I want you to understand why development has slowed. Why LMRB hasn’t progressed since my last post. I have so little free time in the day outside of taking care of my family it’s hard to get the motivation sometimes to work on things. I read *every* *single* one of your bug reports and tweets. Your YouTube comments. I want to give you all so much – and I’m struggling.
I guess I just want you all to understand a bit of why things are the way they are – so that maybe you might have some hope in me that I will fulfill my (many) promises.
I *will* finish Equivalent Exchange 3. I *will* return to LMRB. I *will* fulfill as many of the promises I have made to the best of my ability, but my family comes first. I gotta be a husband and a dad before I can be your Pahimar.
This was a lot longer than I originally intended, but I guess you deserve to know what’s up. I hope you understand and can forgive me.