Thursday, September 18, 2008

6 month visit

Brooklyn had her 6 month check up yesterday.

As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!

Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.

I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.

Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.

Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?

And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?

“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”

“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”

Well, what if?

Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?

I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.

I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.

6 comments:

Hope said...

First of all, WTG Brooklyn for gaining weight!! How is the Synagis shots going? Or did they deny you? I hate all insurance companies right now! I wish you lived closer, I'd share Ava's pulmonologist with you. I really hope Brooklyn DOES get the tests done in October. I want you to know what's wrong with your baby. Ava had it all done and we got so many answers. But, I can relate to the fear of the tests and all.

Ava saw her pulmonologist this morning and I thought of you when we were discussing her weight. He said babies with such significant malacias are tiny, often needing ng feedings. I wish I had more advice. This is the only problem we don't share. We caught this in time to start her on a high calorie diet at 2 wks old.

Why is it every time I read your posts, I want to scream at Brooklyn's doctors? They need to find out what's wrong with her and fix it.

I know the hopeless feeling you have very well. I wish our babies didn't have to fight so hard. You are doing an amazing job. You're a great mother. Hang in there!

And Baby Makes Three said...

This is probably a stupid comment, but have you had B seen by another pediatrician? It may be worth another set of eyes looking at her and her history to get a different view and maybe go a differnt route to find out what the problem is. I would say NO WAY to the waiting thing...you're the only voice Brooklyn has right now, and even though the tests are invasive and hard on her, there has to be some answers...hang in there, we pray for you and send you ((HUGS))

L.G. Reeves said...

If it was me, i would say have the test done. Even if it does not find a new thing, then at least you rulled it out and can sleep better. Good job on the weight gain.

you are a good mom!!

edie & ella said...

Great job Brooklyn....WTG sweetie pie!!!
Man I am so sorry that you are having to go through all of this...I have absolutely no advice for you other than to keep up the good work. It must be so damn frustrating but it sounds like you are doing a great job advocating for your little angel. Take care of yourself SAM

Liz said...

I say go ahead w/ the test. If it opens a door you didn't already peek into, then great. You'll get some answers. If it says there's "essentially nothing wrong", then you'll have peace of mind. It's worth that if nothing else.

And way to go baby girl! 7oz in one week is awesome! And Dr. A's right about all the developmental stuff. None of my kids were sitting unassisted at 6 months. And all of mine were between 18-20 lbs at one year, so if she's up to 17 lbs by then, that's perfectly great!

Take heart, mama. You're doing a great job!!

Emily J. said...

I am so sorry that your faced with this decision. We finally decided that we will put Avani through how many cath procedures just so that she wouldn't go through another open-heart. And then the Dr. called and said the cardio team changed their plans and Avani needed the open-heart again asap. Just when you come to grips with one thing something else happens. Mother's like you are a different kind of breed. For some reason God has chose you to be the mother of a beautiful baby who needs extra love and care. Some mothers take for granted their healthy babies, I use to be one of them until I had Avani.

Hang in there and follow your heart.
Emily

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