God always knows when we need a little hope, just bits of anything to make us keep moving forward. Today was one of those days. Oh how I have begun to dread our GI appointments. Not because of the doctor who I really like and he continues to get to know Annabel and her sweet little body. Just because it reminds me that we are TPN dependant. I know I am not ready to give up on ever trying to feed Annabel again. But sometimes it feels like we are at a dead end. But not today. I went in armed with my list of questions.( When you are my age, we have to have list. Otherwise I will leave and forget while I came there!) One was the constant weight gain. She has gain 1 1/2 lbs in less than 3 weeks. She topped the scales at 34 lbs. She is so uncomfortable, needs more oxygen to sleep and at times during the day. A big jump in the amount and this is not her normal for awhile now. The good news is the dextrose will be cut back and we will get two more hours off TPN per day. So we will only run the TPN for 18 hrs. This should help her liver and also cut back on calories.
The second addition is to try Ella care formula. I have requested this because I thought it could be something closer to her breast milk. For any of you who don't know, Annabel had been on the breast milk from the milk bank. There is such a shortage from the milk bank that Annabel is lower on the ladder to receive the milk. We have been getting the milk from milk donors in the past but the doctors say she is at a high risk for bacteria. I was still willing to use the milk from the sweet donors who have given so much of themselves for Annabel. But two weeks ago something happened that hurt me deeply. A sweet mother shipped a large cooler of her carefully packed breast milk, to be shipped overnight. It didn't get to my front door for 3 days. The box had been damaged and was in such poor shape. When I lifted it at my front door it leaked something white. That is when I realize it was our sweet friends breast milk. I went through each bag hoping to save it, find any hope of ice still in the bags but most were busted and I tried to refreeze (knowing this shouldn't be done) but when I thawed the first few bags I knew from the smell test it had spoiled. I couldn't help but feel negligent that this was my fault and that it had been wasted. Of course, I was furious with the shipping company but this couldn't get this liquid gold back. Since this is something I cannot control again, I cannot ask for the milk to be shipped as I can never waste that much milk again! I will always hold these mothers close to our heart and be ever so grateful for this gift of gold. It has given Annabel basically almost 4 months of no laxative and I can't help but think that some healing has gone on inside her tummy.
So I will turn my attention to this pre-digested formula in the hopes that we can make this tummy work again. HOPE, even if a little! So today as I traveled back from Houston, the sky looked bluer and the grass seemed greener! The breeze felt so good and I know HE and only He lifted my spirits today.
Next up was Annabel's therapy day. I have not been feeling too good about her energy level and the lack of wanting to interact with her therapist. Oh how Annabel has always loved an audience and to be the center of attention. For one hour she was so happy and tried so hard at everything. Since she has been ill she hasn't done that much with her PT. Today she did, and she even, (if briefly) accomplish a few things not done before. All the way showing a few smiles!
But of course, when she walked out of therapy was the PRIZE! Look at that Johnny and his beautiful, excuse me, handsome smile. Maybe she knew he was waiting at the end of her rainbow this day...
Again, HOPE that she can get back at some point to where she was before. I never care how long, it just makes a mom feel good to see her smile and feel better...
No doubt, I could feel the prayers for Annabel, thank you!