Our sweet little girl is trucking right along. She has good feeding days and not so good. Yesterday was a not so good day. She was only at 75%…..still better than the alternative but sad for this momma who was hoping and praying for 100% yesterday.
Even starting today at midnight, she was doing great with her bottle feeds until her 10 am feed. Then she had to take 10mL by NG tube.
Feels like such a punch in the gut when that happens……
Was really expecting and believing in a 100% day today. I am thankful that she is not here technically as a “sick” baby…just one that needs to learn to eat and grow. But man do I wish she would EAT! The hard part is that you can’t make her. That burns extra calories and energy…she is already tired enough. She eats what she wants just like any other baby, but around here that is not enough to get you home. She is actually even eating less than they want her to. They really want her eating 60 mL per bottle and she is struggling with 52 mL. We talked with the doctor about trying to feed her more when she seems interested and less when she is not but so far today she has BARELY finished her bottles so we have not given her any extra. Sounds good in theory but not in practice.
We of course want her to grow strong and healthy so she can have her surgery but we also want her to be home…..
I am so ready to be home with my husband and babies all under one roof……..not sure how these families do it that are here for months on end. I think if it was your only child, it would be hard on you and your husband but you could do it.
When you have other children at home, it really is your worst nightmare. Who do you choose? Do you choose to go home and take care of your other little ones and leave your newborn baby in the care of others?
Or do you choose to stay at the hospital, scrambling to find care for your other children, upsetting their routine by constantly moving them from available friend to available friend. It feels like you are taking advantage of everyone and there is nothing you can do about it.
I shudder to think what Bryan and I will have to consider if Neely is not home by Sunday. I know he has to go back to work at some point…..time off doesn’t last forever…..I so want to be in two places at once….wish that were possible…..
On a happy note, Neely had her hearing test today and she passed with flying colors! The nurse that came in and did it said it normally takes at least about 15 minutes for them to show what she is looking for in order to “pass” her. Neely was at a passing point almost immediately! WooHoo! Praise the Lord!
Even though I am a slacker picture taker, we enjoyed visits this morning from Neely’s great uncle Nelson, my mentor Joy and my sweet friend Brandi. So thankful for all of them and especially Brandi. She is walking this journey right ahead of me with her little one, Seth, who has Down Syndrome. She has already been a valuable resource and I look forward to being able to pick her brain when I need to! 🙂
Bryan brought the girls to visit today and it was so great seeing them. They almost seem like different children, both seem older, Ruby Kate seems to have especially grown since I saw her last. I felt like I was talking to a five year old instead of my sweet little two year old.
Can I ask you to pray specifically with Bryan and I?
- We are praying for Neely to eat what the doctors order, completely by bottle.
- We are praying for increased energy for our little Neely so that she can eat without tiring so quickly.
- We are praying for peace and stability for our little ones. For them to know we love them, even when we can’t be with them.
- We are praying for those that are caring for our little ones. That they know they are appreciated. That they find rest. That our little ones do not upset their day to day life.
Thank you for your continued prayers and encouragement.