Off the continuous feed

Claire has switched from continous feeding to a "bolus" feed (i.e. where she gets two hours worth of milk - 26cc - in an hour and then an hour "off"). She seems to be tolerating it but has not gained any weight (4lb, 10oz) in a couple of days.

Otherwise, it's more of the same - lots of sleeping but some awake time, too - including some brief stretches where she lets it be known that she isn't happy. Some nurses have described her as "feisty" - good when she's 6 weeks old (today), but tougher when she is 6, or 16, years old :-)

Sunday, July 30th

Claire still seems to be progressing, still tolerating her feeds (up to 13 cc/hr) and doing pretty well. While she still remains in the NICU they are at least now talking about moving her to the continuing care unit @ The Barbara Bush Children's Hospital (up a few floors in MMC)....haven't talked about when though. A lot will depend on how many admissions the NICU gets - with the more stable babies being moved. The family spent a couple of night in Portland at a hotel with a pool (we picked a good, hot weekend!) and we were able to visit a little more with Claire.

Thanks once again to everyone for their notes, calls and meals..we really appreciate the thoughts and effort.

New Pictures

Claire's feed is now up to 6cc and hopefuly increasing 1 cc every 12 hours, looking to get up to 12 cc/hr. She still seems to be tolerating her feeds and the yellow, seedy, breast-milk poop is coming out her colostomy bag - the surgeons are most excited! She also is awake more which makes visits even more fun.

PS - Having trouble loading the pictures...will try again later.

Monday, July 24th

Claire seems to be doing very well. Up to 5cc/hr and 6 later today. If things go well she may move up to continuing care next week - the light at the end of the tunnel?

Sunday, July 23rd

Keeping our fingers crossed as Claire continues to tolerate her increased feeds (up to 4 cc/hr). She gained another ounce and is now 4 lbs 10 oz. Hopefully she has "turned the corner". Yesterday, Madelyn came down for a visit before going to the Sea Dogs game with her friend Colby, while Grace stayed with Nana & Grampie Dwyer. The game got rained out but they still had a lot of fun...the got to meet Slugger and meet a couple of players and they ate pizza cake & ice cream! It rained so hard on the ride home last night we almost had to stop to let the storm pass due to poor visability. Just Mom & Dad came down today and are spending the night at the ROnald McDonald House will Madelyn & Grace have a sleep over at Nonnie & Gimpy Jones.

Wednesday, July 19th

Up and down, up and down...it feels like we're on a roller coaster. Claire had her feedings stopped yesterday (Tuesday) after being switched from contstant to interval feeding because she couldn't keep it down. So we were kind of down after the progress she appeared to make on Monday. The good news is that the surgeon likes what he sees and they are going to try feeding her again tomorrow and they moved her from an Isolete into a conventional crib.

Sunday, July 16th

Claire continues to go well. Her color looks good and she has had all tubes removed from her nose. Weight is now 4lbs, 1 oz (down from 4.5 a few days ago - but that was mostly fluid). Hopefully they will start to feed her today and then she will really start gaining weight.

The family stayed in Portland overnight - it was a good, hot weekend for the pool!

Claire Progressing

I spoke with the nurse a few minutes ago and they have removed Claire from the ventilator and reduced the amount of morphine she is getting. The nurse said that she was doing "great" and progressing nicely. She's still a little puffy, but that is normal post-op.

So, it sounds like Claire is doing ok, resting, healing and hopefully feeding next week.

Emergency Surgery!

Claire had a lower GI done this morning and the doctors saw a hole in her large intestine which necessitated emergency surgery. This hole is probably the cause of her inability to digest (i.e. necrotizing endocolitus - NEC) http://www.kidshealth.org/parent/pregnancy_newborn/medical_problems/nec.html
While they had her open they found other things to "take care of" in addition to the perforated rectum. She had a loop colostomy performed and she also has malrotation of the intestines (instead of the large intestine encircling the small intestine, the large is on the left and small on the right) and it will be that way for the rest of her life. Everything will still work as it should, just a different setup from most everyone else. To top everything off she had her appendix removed! Quite a busy day for the little girl who just turned three weeks old!

The prognosis is good and the surgeon is happy with the way things turned out. Claire is heavily medicated and resting, with the hope that in a week she will be able to start feeding.

First Family Picture

This is the first picture with all five of us (though I think only two have their eyes open)! This is after an afternoon at Crescent Beach in Cape Elizabeth (not Claire).

Another good day for Claire...her blood cultures came back negative and she acted pretty good all day.

She will have another test on Monday (lower GI) and if that goes well she could start feeding again on Monday.

Friday, July 7th

The doctors have been treating Claire for an infection and she will continue to be on antibiotics for another couple of days. Her "spirit" seems to be back after being on the antibiotics for 24 hours. They are still trying to determine the cause of her inability to digest food and all of the tests so far have come back "normal". She will continue to rest (i.e. they will not put her feed tube back in) through the weekend before undergoing some more tests on Monday.

Mom, Dad, Madelyn & Grace are going to try out a new beach (Cresent Beach) in Portland before visiting Claire on Saturday.....

Good Day, Bad Day

Monday was a good day with no changes in Claire's status. She is 3 lbs 4 oz and 15.75" long. The family stayed overnight in Portland and Madelyn & Grace enjoyed the pool at the hotel and the Sea Dogs baseball game...while we didn't stay until the end (they were behind 13-0 in the 7th) we could see the fireworks from our hotel window.

Tuesday wasn't so good. Claire still isn't able to digest her food and they decided to remove her feeding tube in the morning. She had an upper GI to determine if she had twisted bowels (which would require emergency surgery) thankfully, that wasn't the case. They still don't know exactly what the problem is and she is having a rectal biopsy today.

All dressed up.....

and no place to go - yet. The nurses in NICU dressed up Claire last week and took this picture (one of the few times she has had her eyes open).

Claire has gained about an ounce a day over the last couple and is now 3lbs 2 oz and she seems to be doing ok digesting. Other big news is that we changed her first messy diaper on Friday - I know it doesn't take much to get us excited.