Tuesday, August 19, 2008

Waiting...

I was reading one of my baby development books the other day, and it said, "Your baby will see his/her pediatrician five times during the first year." Haha. You authors are hilarious. We've had more visits than that during the month of August alone.

We were at Dr. A's office until nearly 7 p.m. Monday. He was kind of late seeing us, but I don't mind because he is always so good about spending plenty of time with us and working with us to try to do the best thing for Brooklyn.

Good news first....guess who weighs 11 pounds, 7 ounces!!! Go Baby Bear! I literally clapped my hands and cheered when the numbers came up on the scale. Wow. Dr. A said that Brooklyn is "back on the growth chart...but just barely." I'll take it. It feels like a victory after being completely off the charts the past month or so. We are going to continue the 30-calorie supplements and are also going to start adding cereal to the formula supplements. I hope the weight gain continues.

(***Question: A work friend asked me today if the weight gain was due to the inhaled steroids in Brooklyn's breathing treatments. I honestly hadn't thought of that. I will ask her doctors about it, but does anyone know the answer? If so, is it "real" weight gain? Is it a bad thing for a baby to gain weight from steroid use?)

It appears that Brooklyn's aspiration over the weekend is because her new meds are not working as well as the old ones...and honestly, the old ones didn't do that much for the reflux either. Dr. A called Dr. G2, the pulmonologist, during our appointment. They talked and they both disagree with Dr. M, the ear nose and throat doctor, who thinks that Brooklyn's only problem is a really, really bad case of reflux. Brooklyn is going to keep taking Prevacid and go back on Zantac and Reglan (higher doses this time). The doctors feel that if her breathing problems do not completely disappear over the next few days on these maximum doses of reflux meds, it basically proves that the reflux is not why she has her respiratory issues. So far, no changes.

Dr. A pulled up the images from Brooklyn's upper GI that she had a few months back. He thinks he may see a vascular ring on it (a vein that wraps around and constricts the esophagus and airway). If there really is a vascular ring, it would require surgery, but the surgery should completely eliminate Brooklyn's breathing problems. Dr. A was supposed to have a radiologist as well as Dr. G2 look at the images today and call me back, but I didn't hear anything back from him yet.

Brooklyn's sleep study is Thursday night. I am trying to schedule her video swallow study for Friday morning so that we can take care of both tests in one trip to Dallas. I also did not get a call back from them today. Sigh. Dr. G2 had told Dr. A that this would not be a problem, so I hope we are able to do it. The video swallow study should also help either confirm or deny the presence of a vascular ring.

Oh....Dr. A wrote me a letter last night. It basically listed off all of Brooklyn's medical problems and then recommended that I be allowed to stay home with her for "as little as one month but possibly as long as several months" to take care of her. It explained about all of the specialists she is seeing, upcoming tests, medication regimen, breathing treatments, etc. So now I just have to figure out who to take it to at work and see if they will do anything to help me. I was told by human resources that the sick leave pool was strictly for the employee, not for the employee to care for a dependent. After I tried to explain our situation to the human resources lady, she said that she would check with some of the board members and call me back. That was almost 2 weeks ago. Yet another call I am waiting on...

9 comments:

Anth said...

How frustrating to still be waiting for all doctors to agree what is wrong, and what to do about it!

But YAY Brooklyn for gaining weight!!!

I really hope your employers give you some leave.

Hope said...

I just wanted to let you know I'm here if you want to talk since our babies have similar issues. I think Brooklyn will start packing on pounds with all the extra calories. I have to put rice in all bottles, just 1 teaspoon, (had to quit breast feeding and start pumping). Not b/c of reflux, but because of aspiration. Everytime Ava eats, she gets rattley.

The sleep study may be hard on you. They put up to 27 electrodes on her from head to feet and tubes up her nose (a cannula with wires). It's a little intimidating, but it doesn't hurt them. That statistic is odd to hear, 5 times a year? I think our babies beat that in less than a month easily. Really, your doctors need to work together. Ava's pedi and pulmonologist (and home nurse) talk on the phone and through email alot. Brooklyn's doctors need to come up with a plan together. I don't think her problem is reflux. Ok, done rambling. I hope your week gets better!

Kate said...

I think it's silly that the leave program can't be used for the care of a child. I hope that HR lady calls you back (I'm an HR lady, myself). I would start bugging her! :) Congrats on the weight gain!

And Baby Makes Three said...

YEAH Brooklyn!!! 11.7 pounds! You go little girl! What great news, and there's nothing wrong with cheering when the scale reads an awesome number like that--I've been there, done that! You're doing a great job Mommy!

Jennifer said...

Way to go baby girl! I have a good feeling about her this week. I'm crossing my fingers about all her appointments but I think somebody will figure it all out. And you should keep pestering everyone with phone calls. Don't wait for them to call you - if you want answers you've got to get them yourself. It's like pulling teeth in the health industry but you've got to do it. You're your baby's advocate! You are being so strong and doing a WONDERFUL job! I know Brooklyn loves you just as much as you love her!

Heather said...

When Zack was on "steroid" nebulizer treatments I was told that they were not steroids in the same sense as the ones that people inject or whatever. So I agree with Hope that the weight gain is probably because of extra calories and not the breathing treatments.

Hope you get some answers soon!!

Cibele said...

YAY for the weight bain, go baby go!!!! Just wnat to say that you are doing a great job as a mother! and I hope that things get betetr soon.

Lyla saw her doc 5 times or ner first 15 days of life.. stupid books

Carrie27 said...

YAY for weight gain!!! I hope it is a sign of more positive things to come for Ms. Brooklyn.

I agree that you should call HR back now that you have your letter from the doctor (make several copies, too).

Sam said...

Do you read Here Be Hippogriffs? The URL is http://julia.typepad.com/julia/. She posted something on her Redbook blog (there is a link to the right on her main blog) about her son and aspiration issues, tests, blah blah things you might want to read.

The steroid weight gain isn't "real" weight but if she is on a general inhaler and not prednisone I do not think that it caused any gain. Prednisone is notorious for weight gain but others not so much. Between my father's emphysema and my asthma I know a bit about inhaled steroids, breathing treatments, etc.

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