Neely’s Heart…..

God love our sweet Neely Jane….she is such a precious blessing to this momma and daddy and such a different baby compared to our other babies….

She tires so easily…..

This is what we want her to look like when it’s time to eat…..

But this is what she looks like most of the time….

Just the act of eating and digesting her food knocks her into a deep sleep for hours.  You have to purposefully wake her up before her next feeding and try to keep her awake to finish her bottle.

I never thought I would wish for a baby that DIDN’T sleep through the night.  Everyone always asks if she is a good sleeper…..uhhhhhh….yes, but not for the reasons we want her to be.

We are looking forward to our first official cardiology appointment with Dr. Carlo at UAB this Friday. Excited to find out more details about the time frame until her surgery and what we can expect. We really liked Dr. Carlo while we were in the NICU and are so thankful that God placed him in our lives as Neely’s cardiologist.

If you’d like to check out more info on Neely’s heart defect it is called an AV canal defect.  This website has some great info that is easy enough for even me to understand!  🙂  She is basically missing the separation between the two sides of her heart and the “good blood” and “bad blood” mix.  Once they go in and reconstruct that wall we expect great things from our sweet little girl!  Lots of energy, great growth and for her to be a champ at nursing!  So looking forward to having this issue repaired so we can just get on with the business of loving our sweet little girl for many years to come.

We had a weight check at Dr. Ebba’s on Monday and Neely had gained half an ounce.  Not much gained but it’s better than a loss I say!!!  We started to supplement my breast milk with a teaspoon of formula mixed in but she does not seem to be tolerating it  very well.  She takes only about half the bottle now and it seems to be causing her some tummy trouble.  Ugghhhh, you try to fix something and it causes another set of issues.  Today we have given her a break and have only given her breast milk.

Tomorrow or Thursday we’ll start to supplement with a gentler version of formula and see if she is able to tolerate it.  I am so looking forward to after her heart surgery when my hopes are really high for her to be able to successfully breast feed!  This momma would be glad to pack away her breast pump and bottles!!! 🙂

Today we had a home visit from Early Intervention.  The two ladies that came out, Bonnie and Kennis were just precious!  The both loved on our little Neely Jane, answered all of our questions and helped us make a plan to help Neely Jane’s development.  Looking forward to working with EI to help Neely! After everything is set up, a therapist will come out to our house about once or twice a month to work with us and teach us how to work with Neely.

I’ll leave you with some photos that my sweet friend Millie took of Neely a few days ago!  She’s such a cutie and Millie did a great job of capturing that!  Thanks Millie!

Until next time,
Jenifer

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