March 15, 2005:  No new updates - things are going well.

 

March 16, 2005: No new updates - still going well overall.

March 17, 2005:  Happy St. Patrick's Day!  Theresa celebrated by going to her pediatrician, getting bloodwork drawn, and then having a synagis shot to help prevent her from getting RSV (a virus that would probably only cause a mild cold-like illness in adults and healthy children, but is potentially deadly for babies with underdeveloped lungs).  She handled it so much better than I expected her to, and by the time we left, she was sleeping peacefully again.  Though this won't allow her to be exposed to lots of people, it does help ease my worry that she has some immunizations.  The rest of her routine immunizations for a 2 month old baby are scheduled in a couple of weeks.  Her weight was up to 4.65 Kg (approx 10 lb 3 oz), which is a good average gain!

We have successfully switched home health care agencies, and are awaiting insurance approval for the new syringe pump! 

 

March 18, 2005:  We went to Texas Children's Hospital for a swallow-function test and to meet with her pediatric surgeon, Dr. Cass, today.  They gave her a bottle of barium to suck on and swallow while they watched her under x-ray.  The speech/pathologist, Amanda McGavin, who performed the test, said that she did very well considering that she had never drank from a bottle before.  It showed age-appropriate aspiration (meaning that it didn't aspirate all the way into the lungs, but that all 2 month olds have some minor aspiration).  Dr. Cass said that the fundoplication surgery still looked inevitable, but perhaps we could wait until a month or so before scheduling it.  He also agreed to allow us to try bottle-feeding her 15 cc (1/2 ounce) of Enfamil A.R. formula (which has rice starch in it to make it heavier and not as easy to spit up) every day, up to twice a day, and see how she tolerates it. 

 

There was also some concern about her having a mild reaction to her abdominal wall patch, as the hernia repair scar isn't healing as well as Dr. Cass would like to see it.  It isn't going to harm her, it's more of a cosmetic problem, and won't be as "invisible" as previously thought to be.  Though I wish it would have healed faster and less visibly, it's such a minor detail as compared to the internal healing, which seems to be going well.  There is a slight bulge on her right side where the abdominal muscle was used to patch her hernia, but in time it should strengthen and heal properly.

 

March 19, 2005:  I called around to several stores, and sent Tim looking for the Enfamil A.R. so we could start feeding Theresa by mouth.  She was interested in it, but didn't know how to coordinate the sucking/swallowing very well, so most of it just fell out of her mouth.  Less than a hour later, she spit up everything she had managed to swallow.  We'll try again tomorrow, I guess.  Maybe she'll get the hang of it with some practice.

 

The new home health care nurse came today with the syringe pump and supplies.  Though it requires changing out the syring more often, and isn't quite as portable as the bag pump, I prefer it since it is all one piece, and the syringes are so much simpler to pop in and out rather than having to clean out the bag each time. It isn't perfect, but I don't think lugging around any extra equipment is considered perfect, and it is temporary, so we'll survive.

 

March 20, 2005:  The city held an Easter Egg hunt today.  Since fresh air doesn't pose as much risk for Theresa, we brought her along since the weather was so beautiful.  I think she enjoyed being outside, though she slept most of the time. 

 

We tried bottle-feeding her again today, and again she didn't tolerate it well.  She is feeding on it better, but still refluxing it right back up.

 

March 21, 2005:  Theresa isn't doing well at all on the bottle feedings.  This time, she threw it up as soon as it touched her stomach.  Mucous and milk came up almost immediately.  This concerns us, since she doesn't seem to be progressing.   Tim and I discussed it, and think we should proceed with the fundoplication surgery sooner rather than later.