Our Down Right Beautiful Life: Learning and Growing

It was a big week for us, Claire had her first developmental evaluation and her biggest sister, Anna, started Kindergarten!

All of Claire's specialists have been pleased with how she is doing this week which is refreshing news after the last couple of weeks. The working theory is that now that the NG tube has been placed, she is actually getting her heart medication (and not aspirating it) which is giving her more energy although it still isn't helping her breathing :(. She weighed in at 8lb 11oz yesterday which is back up to what she was a couple of weeks ago before she started losing. She is still "off the charts" at the 0.78th percentile but we're heading in the right direction again! She has "good" days and "not so good" days with eating, some days we use the tube more for feeding and some days where we hardly use it at all.

The theory is that she will continue to struggle more and more with weight gain and breathing but we are trying to get her as big as we can before we go ahead with open heart surgery (we see her cardiologist again on 9/12 to see how it's holding up). Right now, she is getting 24oz of breast milk per day which is exactly on track for a baby of her size BUT because her heart is working so hard and she is having to work so hard to breathe and eat, she is still struggling to gain weight even with the correct amount of breast milk. So in order to help her, we are fortifying the breast milk. Her tummy is too small and she's too tired to increase the volume of breast milk so increasing calories is the best option. We will diligently keep track of her intake and continue to meet weekly with a dietician so that we can stay on top of both the volume and calorie content as her needs change.

We are still struggling a lot with reflux and bowel movements/gas but nothing new to report, her surgeon is still seeing us every week to help and we are still doing the dilations and irrigations twice each day.

Look what I learned to do this week!

Her developmental evaluation went well, she is behind but we already expected that. The therapists gave me some things to work on at home but we will not be starting therapy until after her heart surgery. With how hard her little body is working, it just doesn't make sense to add anything else. After surgery her body will be stronger and more ready.

Her newest little trick this week is that she is lifting her head for very brief periods!! I cried the first time she did it, all of the little milestones are becoming very precious <3.

"O Lord, you have searched me and known me!

You know when I sit down and when I rise up;

you discern my thoughts from afar.

You search out my path and my lying down

and are acquainted with all my ways.

Even before a word is on my tongue,

behold, O Lord, you know it altogether.

You hem me in, behind and before,

and lay your hand upon me."

-Psalm 139:1-5

Be encouraged, dear friends, nothing you are going through is "too small" [or "too big"] for our Father. He loves you so much that he cares about every little part of your day, no matter how big or small. He goes before you and behind you. Have a great week, we are praying and believing for great things for all of us <3!