Wednesday, July 2, 2014

God be my Strength

Cooing and smiling at mom!

Yesterday we had Savannah's Cardiologist appointment...I was not looking forward to it. I knew weight gain had been slow. I even contemplated canceling the appointment and rescheduling it for a later time, in order to give her more time to gain weight...but I didn't.

I met the third and last cardiologist. She was very nice, I liked her immediately! I appreciated how she treated me as an equal and spent time explaining everything and answering any questions I had.

She explained that she is concerned about Savannah's weight gain and how the lack of weight gain actually put more strain on her heart. She showed me her chart and how she has slowly fallen off the chart for her age. As she put it, "she's wasting away." Though Savannah HAS gained some weight since birth! She is at 8.4lbs at this time...that is way below what she should weigh though.

It's our little "peanut"

I asked about waking her several times through the night. You see Savannah started sleeping through the night! Every mother's dream, right?! Nightmare for me though!! Besides who in their right mind would wake a sleeping baby?! ;) She is so exhausted from just breathing (it's a workout on it's own, nursing even more so), that she sleeps a lot. Waking her would not allow her body to get the rest it needs and breastmilk alone does not supply enough calories. She burns so many calories that we really need her to take a bottle with fortified breastmilk (which I, hate, hate, HATE...I don't want her on formula, even just a little), but she wont take a bottle even for the therapist and she's not getting enough through the syrenge! I would have to feed her all day with it. Which I do spend the majority of my afternoons doing just that.

Needless to say, unless she took a bottle there is nothing else I can do except have an NG Tube placed. The NG Tube is the issue I feared and dreaded the most (besides OPEN HEART SURGERY) and now we are facing that. Josiah use to rip his out ALL the time in the NICU! Augh!! At least she can still eat if it gets pulled out until a nurse can put it back in.

We found out Friday that the health insurance will not continue covering for the VNA nurse to come out for weight checks. The doctors are NOT happy and disagree with that decision. So her coming home with an NG Tube should get that started again, since it WILL be medically necessary (we hope!).

So the cardiologist asks if I will need time to get all my "ducks in a row" before. I like of course! I have 3 other kids I have to get situated. I start to tell her that next will be REALLY difficult to find help, but if she gives me a few days, I can probably figure something out. Her response..."No I mean this needs to get done. As in I want her admitted tomorrow (Wed.)." Umm...Does she have kids?!? HAHAHA! All I can still do is laugh at that! She wants me to be at the hospital for a few days and all I'm given is ONE afternoon to get this ready!! :p 

Hanging out with Naomi. :)

SOOOOO needless to say, I'm just as stressed about getting everything situated as I am about the procedure!!  God has provided help for at least today and I'm getting ready to head into Boston. All I can do is hand this over to GOD, HE is in control and is my strength, my help, and my comforter.

The adventure begins....

For HIS Glory,

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