New vocabulary words

The second hospital stay lasted 5 days and was also really boring.  I tried almost everything on the room service menu. More than once.  I watched 2 entire seasons of The Big Bang Theory.  I hemmed a quilt for a customer.  Outside, it went from fall to winter.  The kids came to visit just about every night and enjoyed the playroom for family visitors.  My mom held down the fort at home and cleaned and did errands.  They put up a Christmas Tree. My dad came on Wednesday morning and mom flew home on Wednesday night, effectively taking turns so that someone would still be able to help us manage our kids and house amidst our continuing crisis. Chris went to work.  Hannah lost weight.

The first bit of progress was that the MRI was normal.  That was a relief.  Dr. Schramm reported that in her scope, he found:

1. The esophagus was closed much like the first time.
2. The airway was particularly narrow.
3. She had a tracheolaryngeal deep groove. Not quite a cleft, but deep enough to take note, but unclear on whether it was relevant.
4. One of her vocal chords looked sluggish. This could be a function of being anesthetized, or it could indicate another abnormality.
5. She had some secretions in her lungs, indicating some aspiration of saliva or mucous.

Dr. Schramm wanted to give the botox a good 2-3 weeks to be fully effective before deciding if it had failed or not.  It was apparent that the dilation had been effective for about a day.  At this point it was important to figure out how to feed Hannah at an appropriate rate for growth, but in a way that would not cause problems. She got an NG tube (down the nose) for feeding. Bolus feeding means a bunch of food at once, and resembles how people actually eat: having a meal and getting full and then waiting until you get hungry again.  For Hannah that would look like getting a 75 mL bottle (through the tube) over the course of half and hour, and then again in 3 or 4 hours.  It gives the stomach the chance to stretch and feel full and feel empty.  You know, regular hunger cues.   But unfortunately the bolus feed made her choke and regurgitate through her mouth and nose on account of the reflux.  Also the feeding tube itself keeps the esophagus open somewhat creating a conduit for things to come back up.

The alternatives to bolus feeding include an NJ tube, which bypasses the stomach and puts food directly into her upper intestine, or a continuous feed with the NG tube.  I want Hannah to be able to have food in her tummy and not have to always be hungry, so I was a big fan of the second option. It was decided that the best way to get her the needed calories was to use a smaller volume of breastmilk and mix in a little bit of powdered formula to keep the calories high enough. The final goal was to see Hannah gain some weight before we could go home. At this point she was almost a full pound below her birthweight (her birthweight was 8 lbs 12 oz).

At one point an Occupational Therapist from the NICU stopped in to see if Hannah's swallow also had a behavioral component that could benefit from swallowing therapy, and if trying different thicknesses and nipple flows would affect her differently. The OT Deanna would prove to be an excellent advocate and source for us.

I don't know why it took us 5 days to get this much figured out and I can't even remember what progress we made each day.  Nevertheless on Thursday the 7th we went home.  I missed the kids choir concert by only a couple hours, which was a major disappointment to me.  I got home around 6pm and had to wait for home healthcare to come and bring me a feeding pump and show me how to nourish my now 15 day old baby through a tube in her nose.



Lexie loved the family play room at the hospital.

My instructions were to follow up with the pediatrician and make sure Hannah was gaining weight.  I also had to look forward to another swallow study and then an appointment with Dr. Schramm in a week and a half.  Somehow I got it in my brain that that time frame was a point at which things could maybe go back to normal, and therefore we'd only have the feeding tube for a couple weeks.  How do I get these crazy ideas in my head, anyway?