Saturday, September 13, 2008

The weight on my shoulders

Wednesday afternoon, we took Brooklyn to the pediatrician for her weekly weight check.

11 pounds, 12 ounces. And she turned 6 months old that day.

She is growing...just much more slowly than everyone wants.

Last week at the gastroenterologist, she nurse told us that Brooklyn weighed "just under 12 pounds." As it turns out, she was 11 pounds and 8 ounces, and the nurse rounded the numbers off. Which is not a big deal at all if you are dealing with, say, a ten-year-old child...but an infant with weight gain problems? Yeah, you shouldn't round up to the nearest pound in that case.

Our pediatrician was actually out of town this week, so at our weight check visit, we had to deal with a different nurse and different pediatrician. The nurse seemed somewhat alarmed and told us that Brooklyn had gained only 4 ounces since August 18th (3 1/2 weeks). They want her to gain between 4 and 7 ounces per week. She went and consulted with the pediatrician who was there, who really didn't want to get involved because Brooklyn already has so many doctors. They told me to call her gastroenterologist (Dr. R) ASAP.

The nurse at Dr. R's called me back Thursday morning. She really freaked me out at first by telling me that Dr. R was considering hospitalizing Brooklyn to have her fed through an NG tube (through her nose). She asked me a few questions then said she would call me back that afternoon after she talked to Dr. R....leaving me to worry for hours about the prospect of hospitalization. I really don't understand why they would even consider this...if Brooklyn was refusing to eat or someothing, okay...but she does eat. She just doesn't gain weight properly. The doctors need to figure out what is the matter that is causing her not to gain and fix it, not force feed her and put her through more pain!

Anyway, the nurse finally called me back. No hospital stay for now. They have changed Brooklyn's feeding plan again...more cereal in the bottles, even more formula powder in them as well, to increase her calorie intake again. Dr. R. is also increasing the number of times per day she is taking her Reglan, because she is still having problems with the reflux and lots of spitting up.

Oh...they also told me that the endoscopy and bronchoscopy will not be until October 17th because that is the first date that the gastroenterologist, pulmonologist, and ENT could coordinate their surgical schedules. So here we sit waiting, again. It's quite discouraging when you know that no progress will be made toward finding out what is wrong for over a month...

My baby can't grow like she should be able to. And I can't seem to do anything to help her. She is so light, and my fears are so heavy.


Hope said...

I'm so sorry they are stringing you along. I'm amazed how tiny Brooklyn is and the lack of real response from her doctors. I have to agree, she may need the help with an NG tube. It will bypass the reflux area and she'll gain weight a little faster. She'd still bottle/breast feed too. I'm amazed they're waiting over a month to do that. It seems that the doctors could TRY to work something out faster.

MrsSpock said...

The prospect of a nose hose would upset me too. You really are doing everything you can to support her- keep hanging in there!

Beth & Steven said...

I think it's a good idea that they're adding more rice cereal and formula to her bottles... the more calories, the more of a weight gain.

As always, I'm so impressed by your strength as you go through these very stressful times.

Please know that I'm thinking of you and sweet little Brooklyn.

baby~amore' said...

Amanda - Sorry for all fears. I can't imagine how upsetting it must be not to mention the constant worry and changing of plans /waiting.

Our childrens hospital used a calorie/kilojoule addictive here called polyjoule instead or as well as of extra formula powder. It worked well for infants to help gain weight.It is very easy to use,easy to mix and bland taste so babies don't mind it.

Polyjoule® (or other energy supplements eg. Polycose® Polycal®, Nutrical®). Ask for information from your dietitian.(basically maltodextrin)

You do have amazing strength and we are all behind you in thoughts and prayers.

Bring on Oct 17th so you can get some solid answers hopefully.

Cibele said...

Oh my friend. Just wnat to send you a big HUGE!!!!! grow baby grow

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