Thursday, April 19, 2007

Mommy report: OT eval

Robin, the OT, was here today to do an initial eval on Nebraska. Overall, she said she was pleased with her progress considering her surgery at 3 months and recent illness. She did well with several of the little test elements, and there were deficits in several, which we expected. Her head/neck strength will be a primary goal and point of beginning for therapy in the next few weeks, on a weekly basis. She did give us some things to focus on when just doing normal stuff at home, to help her in between visits from the therapists.

So very soon we'll be seeing Judy, the developmental therapist, Robin, the occupational therapist (which I think is kind of funny in title, as Braska isn't all that into an occupation at this point), and Luann, the speech therapist/feeding specialist.

Tuesday, April 17, 2007

Mommy report: Feeding frustration

Just a quick post tonight... and Braska's already in bed, so she'll have to put her 2 cents in tomorrow morning.

She has decided that she does not want the bottle at all anymore. This is the kind of thing that frustrates me more than I expected. When I know she can do something and she seems to simply REFUSE to do it... that is hard for me to take. So she's getting NG for most everything now. I hope this changes soon. It's hard to see her take whole meals by bottle one day and just not take it the next.

Thoughts from any of you experienced feeding issues, especially DS related??

Tuesday, April 10, 2007

Mommy report: Two steps back

Today so far Braska has been asleep. She will not nurse or take a bottle at all, so they are back to using the NG tube and a pump to feed her at a regulated rate. She took 70 cc from the bottle at 5 am when the nurse fed her, but she wouldn't get up at 8 am when I got here, she only fussed at 9 am when Karen tried to feed with the bottle, and the same at 11 am when we tried to work with her and the speech/feeding therapist. We tried to give her a feeding by NG gavage at about 10 am but after she had about 30 cc, it all came back up...and out her nose mostly! That must be the most horrible feeling. I just hate watching her look so scared when that happens. She immediately falls back to sleep after any bit of stirring. The speech therapist is coming back at 2:30p to see if she's more cooperative then.

The chief pediatrician came to see her this morning and said this kind-of relapse period is not unexpected, but we hope that she would bounce back this evening and tomorrow. She is still very sick, so her great eating yesterday followed by more lethargy today should not be a surprise or great worry unless it would continue downward tomorrow.

Monday, April 9, 2007

Mommy report: Rotavirus

Yes, that's right...rotavirus it is. They decided this morning that Nebraska's acute issue is due to rotavirus. Click on rotavirus for more info, if you'd like. She has been doing better today, but still has a long way to go. She does have a bit more energy today, but nothing like the wiggles and squirms of recent days. She is one hungry little thing, though, and has been eating very well today. She took a bottle three different feedings today, each time taking more than she's ever taken from a bottle. The only catch is that she won't take it from me, but Grandma C has been taking that task and Braska takes it well from her.

They have decided, with the info we have currently, that her weight loss was in fact due to her not getting enough food. So once again, doctors right, RK wrong... shocking, right? Not at all. She apparently was eating enough to not feel hungry and then she stopped. Isn't that what they're always recommending anyway!?! Maybe that's just for adults... So we're aiming to really get the hang of this bottle thing so we can know she's getting enough.

She also was seen by the cardiologists today and another echo was done. Things look good. The arrhythmia from last night was apparently due to the distress of the acute problem, but not related to the previous repairs of the surgery. They did finally discontinued her Lasix, which I'm pleased about considering the dehydration issues. We'll be seeing a cardiologist that specializes with DS soon.

That's the info for today... we appreciate all your support more than we can express.

Friday, April 6, 2007

Mommy report: Weight update

We stopped in to Dr. Y's office today to do a quick weigh-in for Nebraska. She weighed 10 lbs 8 1/2 oz. That's down again. Dr. Y's concerned about her continued loss, and I understand that. But here's why I'm not...yet, anyway... On the DS growth chart, she is at about 50th percentile with length and about the 35th with weight. I understand that she's lost weight, and I am very appreciative of Dr. Y's attention to this (He's great.), but here's my thinking, and I'm curious what some of you others with more DS experience think. Since for the first 3 1/2 months of her life she was fed through a tube with a specific amount every 3 hours around the clock without fail, she gained weight. She gained alot, and very fast, due to our previous pediatrician having us increase her feeding amounts at a very rapid rate. This is obviously not normal or natural. We did this in order to help her gain as much as possible before the surgery. When we were at the hospital for her surgery and recovery, everyone commented on how "huge" she was compared to what they usually see at that age and condition.

So...although I understand the losing thing, it seems to me that since that was all kind of manufactured gain, some of it even as retained fluid, I am more interested in where she is currently on a growth chart, as well as how she is doing daily. She's functioning great. She shows no negative symptomatology. She has good energy. She is not dehydrated in any way. She's doing all the bodily functions that babies should be doing. She sleeps all night long (if we would let her, anyway). She complains when she's hungry, then she eats, then she's good for a while. Seems to be a good system. Both her father and I are short, he never liked to eat, from the very beginning, and I was a very small, slight baby. So this may be more her "norm" than we realize.

I obviously don't want her to be malnourished in any way, but I also don't want to get all worried and pressured about something that's not demanding of that reaction. And I have felt quite pressured lately, (note:the pressure is self-placed), to get her to improve her intake and consistency, etc. So today I pondered a while and this is what I came up with... with help from my mother's wise advice... She may just be finding her way back to her natural weight. We tweaked with nature in a way, at first, for a reason, and now that she's doing things the way it's supposed to be done, she's not fitting the particular mold that's been laid out. I could be wrong. If she continues to lose, we'll be sure to take whatever measures necessary to be sure she's healthy. We're making a few little adjustments this weekend to see if it helps before the weigh-in early next week. Call it mother's intuition or just an RK-gut feeling, but I think she'll start leveling off and gaining properly very soon. Your thoughts and/or tips are appreciated...

P.S. Braska went to bed early, plus her Pop took the camera with him tonight...there are some good pics from today, so she'll post in the morning for all of you who really only want to see what she says anyway.