Sunday, May 22, 2011

Cath, Hopeful Hearts and Feeding Update

Tomorrow is our very first Heart Catherization.  I'm so glad Jasiu is still small enough to not notice. Joe's and my stomach is twisting and turning at the very thought of this procedure. It's partly because it's the first one, it requires anesthesia and this means that the Glenn is coming up, and that means we must sign for our son's life once again.  Anyways, hopefully we only hear good things from the report and we are home for the night. However if some intervention is needed I will spend the night in one of those comfortable hospital beds for parents again and Joe will come home to Emily.

This weekend I also went to a Hopeful Hearts support group meeting. It was wonderful and gave us (new CHD parents) so much HOPE.  This month Diane, the nurse/coordinator, arranged for a panel of ADULT CHD patients ranging from 12-30 years old. They are survivors and tough ones at that. The 12 year old has exactly the same CHD as Jasiu, HLHS and she is doing wonderfully, a completely well adjusted young woman who came with her mom, also a great resource. Two are nurses, one in PSHU and one that used to work in PSHU and now does something else nursing related.  One woman did competitive figure skating for 16 years!  One runs 4 miles every day! All of them went to college ( with the exception of the 12 year old) traveled abroad and are living NORMAL lives. It brings me hope that my son has a chance to do all that. A few months ago, I didn't even think we would be this far and here I am deeply believing that Jasiu will be able to do everything he wants. These people on the panel have all had 4+ surgeries, one had 11 OHS, the other had 8 and are still doing wonderfully. It's just amazing and Dr. Illbawi did all of them. That man is amazing as well, God must really guide his hands to do the amazing things that he does. The parents of these panelists that were there also gave me and the new parents much hope for normalcy. They confirmed that this CHD life is different, but adjusting is not easy but gets easier to deal with. They answered all questions honestly, you could see it in their eyes and sometimes it was hard to hear, but one must hear it and then really live it for yourself to be able to really understand. Being in that group I feel like they really know me and I finally fit in. It's kind of hard that my current friends and family can't relate, they can try to understand and symphonies but it's just not the same and I don't blame them for it, they can't possibly know and I don't expect them to. I would never wish something like this on anyone. But I no longer feel sorry for myself either. We I have a wonderful little boy, smiley and giggly and wiggly like a little worm now and I'm thankful for each day that I have with him. As one of the panelists said, no one is promised tomorrow, not the healthy person or the CHD person. So we live each day to the fullest, at least we try to for the most part.  Here I go digressing again.

For a feeding update now, Jasiu ate 3 ounces by mouth today in about 35 minutes. Not all at once and not without a few small screaming episodes but he did it. Joe was the one feeding him, as he was all day today since I needed to run a lot of errands and wanted half day to relax and spend some time with Emily.  Joe seems to push Jasiu much more with the feedings than I do. In the group I met a mom who gave me some advice about the NG tube and possible weaning plan that worked with her daughter. So I became obsessed again, I spent half the day researching feeding tube weaning and groups, programs and the like. It was about time I found a new obsession because I think I dug up everything under the sun on HLHS and needed an new topic. Based on my research and some common sense, I'm pretty sure Jasiu developed "tube dependency" and must be weaned off when it's medically safe. For him it probably won't be until after the Glenn, but I'm working on a plan and I think Joe will be a major part of that plan. I just can't seem to be tough enough for it. I give in way to easily. As soon as Jasiu starts crying or fussing at the bottle, I pull out and drop the milk in the tube because I can't stand seeing him upset.  Joe on the other hand works him a little. I still need to call the lady I met at the support group and continue my research but as soon as we recover from the Glenn next step will be tube weaning.  However 3 ounces proves to me that it's not that Jasiu can't eat, it's that he won't or doesn't want to. Weather is's the tube itself or laziness or tiredness we'll find out later but now the most important thing is prepping for the Glenn and recovery.

Until then please pray for our little guy for tomorrow to be a success. I will post an update as soon as I can.

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