Tuesday, May 3, 2011

God always knows....

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!

Monday, May 2, 2011

Trying to be positive...

I have been going back to read post from when she was younger. I love reading those post when for days at a time I could be positive. I could post pictures where Annabel was in therapy and making great strides. She was communicating, standing and making good progress. This blog was to sharing what a blessing Annabel is, to gain information medically and to continue to give hope to others on this Trisomy 18 journey. Reading as of late, I try to find where this blog is going.

My biggest wish is for Annabel to eat again. Not necessarily by mouth but at least g-tube. I was told that TPN was the most proper perfect nutrition that humans could ever have. Blood is drawn weekly and her TPN is mixed for that week. Yes, she has gained weight! She is at her highest weight ever at 34 lbs. For those who don't know, trisomy 18 children are small children. At this point Annabel is needing 2 lts. of oxygen all night and even during the day. She does have a cold and we thought this could be the added need but really her tummy is so huge and with such a small capacity for her lungs that the tummy compresses on her lungs. Therefore, she is so tired just trying to breathe. She has regressed as to not even wanting to sit up.
As much as I would like to remove her from TPN it just isn't possible. Basically, she would starve to death. She cannot take enough in to survive and with her tummy not working it is impossible. We are going to GI tomorrow for our monthly appointment. We love Dr. C and he want to work so hard to figure Annabel out. They have agreed she is one of the most complex children he has. Her liver also doesn't like the TPN and it shows in her values and I wonder how much she feels. Of course she can't tell us. Just an example, I wanted to bring her to church yesterday and she was very uncomfortable sitting up. I moved to our cry room so she could lay on the pew. When I looked down I could tell she was more comfortable laying down but there were tears rolling down her checks and yet she smiled when I looked at her. I wish she could tell me what hurts.

I want to come to you with just the positives...like when she got her blood transfusions almost 3 weeks ago, she has not looked ashen or gray even once! We are grateful. We learned that Annabel probably needs to be transfused around 8.2. The protocol at the hospital is 8.0 but as Dr. C says with Annabel we just can't wait. We waited several weeks and that is when we noticed so much her paleness or ashen color many times a day.
Another positive is that Annabel has been free of IV antibiotic for over 2 weeks. This means no UTI or central line infection. I am so happy for these accomplishments. We are struggling with her central line. This past Friday she had her second blood clot in the line. We spent most of the day Friday in our local hospital dissolving the clot. One of the positives it that normally they don't do central lines locally but they made an exception for us and this saved us a 3 hour drive to Houston. It also gives us hope that if it happens again (it already is not wanting to draw back)we will be able to stay locally and take care of this issue. So for this we are grateful!

Annabel continues to be the sweet child, with a huge beautiful smile. She is the toughest little girl I know. Each and every time I look into her eyes, without a doubt I know there is a mighty God. Everyday, without a doubt I know that we are blessed to know Annabel. I continue to be so thankful for my family and everyone who is part of Annabel's life. Her care has become so much more than before and I have had to realize that I can't do it all by myself any longer. PLEASE, continue to pray that they find out how to help Annabel the best. To locate the cause of the issues with her blood, her tummy and the pain she seems to experience in her bone/muscular area. Prayers that she will stay infection free.