We're settling in for winter around here. Charlotte doesn't have any appointments in Milwaukee until March so we're enjoying the travel-free period.
She is weighing in at 11lbs 6oz currently, despite the fact at times she is throwing up what seems like whole feeds. We're flying through burp rags around here. Outfits too.
The Monday after we got back from Milwaukee, the medical supply store delivered her feed pump. It has certainly made life easier. Now we're living life Showtime Rotisserie style: Set it and forget it.
Unfortunately, Charlotte has decided for the time being she is not longer interested in eating. Starting late last week she has gone from an average 0f 25% bottle feeds to less than 10% and it usually consists of 4-5 "zeros" and 1 or 2 substantial feeds of 20-30mls. We don't know what is up, but we hope it turns around soon. But we also know that this (tube feeding) is probably going to go on for quite a long time so we try to remain patient. At times we fall a little short.
She is sleeping well however. Taking out one of the overnight feeds has certainly made life easier. Katie feeds her from 11:00-12:30. I wake her up at 4:30 to eat again before I go run and then she sleeps pretty well again until her next feed at 8:00. I've even been able to get off the caffeine drip I was on and cut back to a cup of coffee in the morning.
During the day Charlotte is very alert and is starting to play a little bit. She coos some and has a couple favorite toys that always make her smile. We're looking forward to more changes in the coming weeks and months (hopefully involving less vomit).
Erin, the pediatric dietitian from Children's Hospital crunched the numbers and it turned out that Charlotte has been gaining weight a little too quickly. She is currently in the 75th percentile for her height. Erin would prefer to see her closer to the 50th. At least we know she is getting adequate nutrition even with her little puking episodes.
So the plan is to keep her feeds more or less the same, but eliminate one of the overnight feeds. This will be appreciated by all of us since Charlotte has been doing better at sleeping for longer periods over night. It was always frustrating to get her to go to sleep and then have to wake her up 15 minutes later because she had a scheduled feed.
Charlotte is one tough little girl! She made it through her surgery on Wednesday. Patrick and I still flinch every time her bare hands go near her nose. I wonder how long it will be before we lose that habit.
Charlotte went a total of 28 hours without eating (8 a.m. the morning of surgery to 12 p.m. the day after surgery). This made for a long night in the hospital trying to comfort her to sleep without being able to offer her any milk. Her first feeds were fed through her brand new G-tube using a pump and she more or less tolerated them. By evening we were back to attempting the bottle first and then bolus feeding the remaining food (using a syringe and gravity).
We were discharged on Friday afternoon and rather than driving straight through to Houghton we stopped at Pat's parents' house in Eau Claire where Charlotte got to meet her great grandparents. Charlotte was pretty smiley with Great Grandma Dorothy.
We were happy to get a picture of 4 generations of Mehls/Russell.
Feeding Charlotte has become a 2-person job. Since leaving the hospital she's begun throwing up more than ever (and she threw up a lot before) and then she is starving by the time her next feed rolls around. Even with her urgent hunger cries she is not quite up to her average of 25% by bottle. While we know she's hungry, her cries cause her body to tense up and make it impossible to bolus the milk into her stomach. We've figured out the most successful way to feed her is for one of us to hold her and comfort her while the other distributes her feed over 30 minutes. We then hold her upright for another 30 minutes and cross our fingers that at least some of her feed stays down. As you can imagine, this is extra fun in the car.
Monday a pump will be delivered that will allow us to focus on holding and comforting her while the milk is pumped into her stomach. Hopefully they come right away in the morning or Patrick will have a stressful day while I'm at work.
We arrived back in Houghton at 7:30 p.m. today and are relieved to be done traveling once again. Charlotte will need to see a GI specialist in Milwaukee, so we'll be traveling periodically over the coming months.
We hope you all (Charlotte's very kind blog readers) had a happy holidays. Charlotte celebrated her first Christmas in Houghton. This was the first year in a very long time (ever?) that Patrick and I have not traveled on or around Christmas day. While it was less stressful, we missed seeing our families. We were happy that our immediate families were able to travel to Houghton and that we had the opportunity to SKYPE during our extended family celebrations.
In December Charlotte got to meet her Aunt Kelly, Uncle Tim, and Uncle Dan for the first time, and she was quite pleased by all the arms available to hold her. On Christmas morning Santa visited Charlotte, bringing her cute, fuzzy, pink socks. She was decidedly indifferent. I'm sure next year will be a different story.
Charlotte made sure her mom and dad were awake to ring in 2010. We watched the ball drop and were grateful that we were sitting in a warm apartment rather than freezing on the crowded streets of New York.
Home Away from Home
We arrived in Milwaukee yesterday and are back at Ronald McDonald House. Charlotte was wide awake for a good portion of the trip checking out the world around her. It takes about 8 hours to get here with the extended stops we need to make for feeding and pumping, and it was a relief for all to finally get out of the car.
This morning Charlotte's speech therapist, Jen, from Children's Hospital of Wisconsin visited her at Ronald McDonald House (she's staying with us until she's admitted after her surgery) to watch her eat. Charlotte gave her a show and cried and pushed the bottle away. Eventually Jen persuaded her to take her usual amount, but said she has a borderline aversion. An oral aversion would be very bad news, so hopefully getting rid of the NG will help her. Jen is one of the great CHW staff that makes us wish we lived closer to Milwaukee so Charlotte could benefit from their expertise on a regular basis.
This afternoon we met Dr. Arca, who will be inserting the G-tube tomorrow. The nurse showed us how the "mickey button" (we thought it should look like Mickey Mouse, but it does not) will work and it seems manageable and more comfortable. We wish we didn't have to do this, but are anxious for 8 a.m. tomorrow when we can remove her NG for the very last time.
She had an Upper GI this afternoon to make sure her esophagus, stomach, and intestines are functioning properly and they are. I was hoping we would finally have a reason for why she doesn't eat, but I am happy to know she won't need more extensive procedures.
We're having fun walking Charlotte around Ronald McDonald House and showing her all the Christmas decorations and paintings. It's very quiet here during the day when most people are visiting the hospital, so it's nice to get out of our room a bit with her.
Tomorrow we hand Charlotte back over to the staff at CHW. This will be very hard, especially now that we are used to having her 24/7. On the upside, this stay will be much, much shorter than the last; we are hoping to head back to the U.P. on Friday or Saturday.