This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Tuesday, August 25, 2009

Poor Weight Gain, Two Weeks Till Cardiac Cath

Okay, lots to report... I took Scarlett to the cardiologist today and she only gained 3oz since the last appointment which was 3 weeks ago. This means that she may have reached a plateau for weight gain... which means its possibly time for her next surgery (sooner rather than later).

It could also mean that she's getting more active, therefore burning more calories. Either way, surgery is inevitable (we knew this), however, if in two weeks she hasn't gained any weight then they ~might~ consider keeping her in the hospital and doing the surgery at the same time as her cardiac catheterization [aka angiogram] which is scheduled for Sept. 9th. (yikes, wasn't prepared to hear that!)

OR,..... She might go in on Sept. 9 for her heart cath, and maybe she gains weight and they let her go home and come back for her surgery later in the month, or maybe even wait another month and do the surgery in October??...

The heart cath will tell us a lot, but we already knew that. What was unexpected (for me at least), was that her weight gain would slow down. So, the cardiologist (Beth) is going to increase her calorie intake. She was on 26 calories per ounce, but starting today she's going to be on 28 calories per ounce.

In doing so, it will be even more apparent (that it's time for surgery) if she doesn't gain any weight in the next 2 weeks. So, I probably should mentally prepare myself for the fact that my daughter might be going under the knife in 2 weeks. Or... at the same time, I could just mentally prepare for the cardiac catheterization only and hope that she gains weight and her next surgery won't be till October.

I continue to pump every 4-6 hours. My breastmilk supply is up to 36-40 oz per day which is terrific (especially for a personal pump, and not a hospital grade pump). I definitely have plenty of breastmilk for her. What a 28 calorie diet means is that for every 6oz of breastmilk, I need to add 4 teaspoons of Nutramigen (formula). She used to be on a 26 calorie diet up until today.

I will keep everyone posted before, during and after her cardiac cath. Thanks for visiting!
Melodie :)

3 comments:

  1. Melodie, from our experience the quicker the 2nd surgery the better since the older they are, the more they are aware of whats happening. Rish had his 2nd surgery (Glenn) @ exactly 4 months and he did wonderful. He had his surgery on Monday (Feb 16th) morning and we were discharged on Friday morning :) Isn't that a miracle? Yes, he was called the champ of the PCTICU. I remember Heidi gave birth to Ethan on Feb 18th and they were 2 rooms from us. I am sure everything will go just fine with Scarlett. God is with us always!

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  2. Melodie, just wanted to let you know that you and your beautiful baby girl are in my prayers....constantly. Although I can't truly know all the emotions you are dealing with, I know the feeling of being a mother and caring and loving so much on your babies. Please please let me know if I can do anything.

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  3. This is to let you know The 2010 First International Meeting on Cardiac Problems in Pregnancy will take place this upcoming February 26-28, 2010 in the breathtaking city of Valencia, Spain. Join us for the first international congress on Cardiac Problems in Pregnancy. To register, please visit - http://cpp2010.com/

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