Saturday, November 29, 2008

Progress and Setbacks

So, it turns out that Amelia has had some apnea problems. I had to practically beg for information about this apnea because one of the neonatalogists isn't as forthcoming as I would like. Apparently, there are a couple of things going on.
When she was born, the doctors decided to give her nutritional supplement through an IV. It's called a pic line (not sure how it's spelled) and it's a central IV that goes deep into her body. That thing is a source of frustration for me, because every time I try to breastfeed her, the pic line alarm goes off, saying that it's blocked. Every single time, at least 2 or 3 times per feeding.

This nutritional supplement consists of fats and lipids and apparently is standard (in this hospital at least) for premies. Not that I was consulted.

The first neonatalogist said that because she was latching on and getting quite a bit of milk (they weigh her both before and after feedings to see how much she's getting), we could go with on-demand feedings. That means that they wouldn't force her to eat at certain times or intervals, but would let her decide.

This morning, the neonatalogist decided to change the order slightly to try to ween her off the pic line. Not that I was consulted. The result of that weening was that they wanted her to eat a certain amount every certain amount of time.

Because of this, I was pretty upset when the nurse told me they would be putting a tube in her nose or forcing her to take a bottle if she wasn't eating that certain amount every certain amount of time. And I only feel slightly bad about pretty much yelling at both the doctor and the nurse about this whole thing. I told them that I did NOT want her to be bottle-fed and I really did NOT want her to have a tube in her nose. I really really really don't want her to forget how to breastfeed. That was a massive source of frustration with Felix and I don't think I can handle that mentally again.

The doctor conceded that they would hold off on weening her off the pic line to make sure she's getting her feedings by breast first. And wouldn't you know it, they turned down the pic line again and she still got a great feeding last time I was in.

The other frustration is the apnea thing. The neonatalogists have both told me that no hospital will send a baby home if it has apnea. Well, after practically yelling at the doctor this morning, I finally got him to tell me that there are certain levels of this apnea. And Amelia is having bad enough apnea that it will keep her in the hospital for 7 full days after her last episode. Since she had an episode this morning (change of color or 20 second documented without breathing - this morning it was the color change), that means I won't be able to take her home for at least another week.

This is one of the reasons why I think it's premature (hah!) to ween her from the pic line. If we know that we have at least 7 more days before she can be discharged, why can't we just ween her a lot more gradually? It doesn't make sense to me to fill her more full of tubes and force her to take a bottle that will only make things more complicated once we get her home. Plus, she's already back up to her birth weight so it's not like things are any kind of desperate... You can imagine my heartbreak at not being able to have my baby yet. She is in every other way healthy and it just kills me to not have her here. I'm finding it extremely difficult to adjust mentally to having this baby that I don't actually have. I will concede that the hormones left over from pregnancy might be making things worse, but I doubt I'd be happy with the situation any other time.


Add-Options said...

Why does this sound like typically treatment at Utah Valley Regional Medical Center?

erinannie said...

I hate to say it like this, because I know how much you want to have your baby home with you. But- "she's in every other way healthy" except that she stops breathing and can't eat, isn't a healthy baby! Let all those medical professionals with all of their education, experience, and expertise, be there for you! Work with them, not against them. Don't leave her side. Stay with her round the clock and make sure you get all the info. And take home the healthiest baby possible!

Dirtius Wifius said...

Add - it's Timp hospital.

Erin - that's why I said "every OTHER way". She does eat though and gets plenty of food from breastfeeding. So it really is just the apnea thing. The frustrating part is that I know more than a few babies who were sent home with apnea. But yeah, I'm trying to get all the info, I just hate feeling like I have to pry it out of them.

Beth said...

Oh I'm so sorry. It is hard to have a baby not with you. Madison only stayed one extra day and that was frustrating and horrible enough. I can't imagine how frustrated you must feel right now. We'll keep praying for you and your sweet little baby. Keep us posted, we love you.

Kristin said...

That sounds horrible Heather. I am SO sorry. I was an emotional wreck after all my babies and that was with things going smoothly. I can't imagine having to go through what you are experiencing. I totally understand the frustration with the bottle versus breast feeding. I remember your experiences with Felix that you have shared with us. I understand your not wanting to repeat that. Doctors don't know everything (even thought they like to think they do) but try to think on the positive when they are being pains in your butt. If your baby had needed them, they most likely would have saved her life.

Michelle said...

She is absolutely beautiful! Bless all your hearts. Jonathon spent one emotion-wracked night in the hospital the night after we brought him home, and you are absolutely right. Post-natal hormones are a bear to deal with and not having your baby only makes it worse. As hard as it is not to have her with you at home, let her stay as long as she needs to to be healthy once you do get her home. But stay in their faces about keeping you informed! You are her mom, and mom trumps diploma where right-to-know is concerned. We love you and we're praying for you!

nava_jo said...

First of all CONGRATS! Your lil'sweetheart is adorable. And I am so glad you are both doing fairly well. I can't believe you had her already. REmember you were due a day AFTER Me. :) I'm sorry you can't take her home yet. What junk having to wait. But thanks for being such a good mom, and keeping on the staff. you do deserve to be an informed mother AT the VERY LEAST.

CarrieAnne said...

What the hell? They should tell you all you want to know and more than you can possibly understand. That's the whole "I'm the mom and this baby is MINE not yours" thing. I would do go ape on their asses.

Sorry to swear on your think I was a little cranky when they called for that "Sally GET IN HERE STAT!!" girl? Whoa baby! You ain't seen me when they do stuff with my kid without my knowledge, input, consent, and taking part in the decision making.

(Seriously, I will go with you and get all sorts of information if you need me to.)