Ashley's Story

She will leave fingerprints all over your heart


Too much Too Soon

I've been taking things slowly with Ash. According to our schedule she should have earned an increase in her feedings for 6 of the past 9 days. It just seemed too soon to me, so I made the decision to go slow and steady. No matter what her numbers said I thought I should evaluate how I thought she looked and if I thought she would tolerate the increase well enough. I guess I should have waited a few more days.

According to the schedule I was discharged with each 24 hours period that Ashley Kate has under 840ccs of stool out of her ostomy I should increase her tube feeds by 3-5ccs. Along with this increase as she hits 40cc an hour, 50cc an hour, 60cc an hour and finally 70cc an hour her TPN should be weaned down lower and lower. Now the ultimate goal it to get her back to a rate of 70 cc of tube feedings and no need for TPN. The goal is to remove the pic line and reduce her risk of infection. Knowing all of this and knowing she had been doing so well I made an increase yesterday for the 3rd time since arriving home. 5occ an hour of tube feedings and TPN for only 10 hours a night. I guess it was just too much too soon. Yesterday she proved to not be ready for this increase and has stooled out more in the past 24 hours(that period runs frm 6am to 6am) then she has in the last two weeks. I'm holding my breath as I empty her bag each and every hour. Hoping for little to no output to be found in there. So far I've almost turned blue in the face for nothing. Each and every time I have checked there has been stool and it has had to be added to the growing number. I am so disappointed. I think we will just sit and hang out around 50 for quite some time.

As we muddle our way through this recovery I try to remind myself of the length of time it actually took for her to heal a year ago. Full feedings did not happen over night and every high stool output day did not mean she had slipped back into rejection. It was a long, up and down recovery and it took months and months. I have to remember this. I have to remember to breathe(a passed out mommy isn't going to be able to take care of a weak Ashley). I get so nervous with every little sound, each cough, each diaper change or bag empty. I find myself so wound up wondering if she's ok and asking her a hundred times a day, "Are you ok?" Its not like she can even answer me.

For the last 3 mornings we have gone to measure her output at the 6am hour and found her laying in her bed with her ostomy bag removed. I guess she knows that its time for mom or dad to come into the nursery and so she tries to help us out a little. I wish she realized that removing that bag wasn't helping. In fact it was making that hour much more difficult on us as we prepare supplies, wash a screaming baby, and change her sheets.

I so desperately want Ash to feel good. I want her to be her silly self. The self that she was before she became sick early last month. Its going to take a while, but I still long for her to have good day after good day after good day. She's home and that's the biggest step toward the right direction, I just fear that any day things will go south and there's not much room to go south when you live in Texas. I mean anymore south and were going to start drowning. I wish I could just breathe. Slow and relaxing breaths for slow and relaxing days. Just as her feedings have yet to reach that normal range so has my heart rate and my breathing.

Its a long recovery. She's not quite there. Lots and lots of healing left to do. Its proving to be slow. Its not an easy process as she is pushed to her limits daily. It kind of seems as though I'm being pushed to mine right along with her. I've found myself in the floor in her nursery right next to her on many a days lately with not much left to give.

Your prayers for Ash's recovery would be greatly appreciated. I'm praying for jut a little stool today instead of the "lots" I got yesterday. Yes, I pray over poop. I know there are bigger problems in this world, but in ours it still all comes down to poop. Go figure!


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