Oct
17
     
A little better(Day 450)
Posted (Tina) in All Posts on October-17-2008


Ella did better last night. I was still up several times, but she did not seem like she was having as many tummy issues.

I think that the volume and density of the food is helping. Although she still needs to be vented frequently, she does not push back a lot of food. This means that she is tolerating the volume well and that the volume of food is not causing too much pressure. Throughout the day, she is not fussy and complaining about a lot of pain. We think that the density of the food is not causing tummy discomfort – thank goodness!

We’re excited to try the Farrell bag solution. It will not arrive at our door until Monday. I’m really hoping that it provides Ella with a higher level of comfort and prevents us from having to vent constantly, especially overnight.

Ella acted more like herself today. Although, there are still some instances where she seems to not handle herself well. For example, she melts down when we change her diaper. She never used to do this, but since this recent hospitalization, she loses it. Or giving her a bath. She never loved them before but she would sit and tolerate it and sometimes flash me a smile if I made a silly face. Over the last few weeks, she simply loses it and melts down. So aside from the physical changes in Ella since surgery, she definitely acquired some not-so-favorable learned behaviors.

The plan is to keep her comfortable on a continuous feed of the 24 kcal formula over the weekend, at a rate of 35ccs. We’re hoping and praying for a restful night of sleep.

Psalm 27:14
Wait for the LORD;
be strong and take heart
and wait for the LORD.


Joel Snyder on October 17th, 2008 at 10:59 pm #

Ella, Just got home from the museum and I am really happy to hear that you are feeling a little better. I am praying that you can keep up the steady progress and that your new bag when it arrives works for you. I will check on you later. Love,Grandpa!!!!!!!!!!!!

Williamsburg on October 18th, 2008 at 8:24 am #

Sort of amazing that _no-one_ from any of your other medical interactions mentioned the Farrell bag – what a simple, yet ingenious solution. We’re praying that it makes a big difference for all concerned. Glad the new formula for food is helping and we pray continuously for progress on the issues that continue to be a challenge. Thanks again so much for taking the time and making the effort to keep us in the loop. Hugs and all our love. XOXOXOXO

Laura Marold on October 18th, 2008 at 10:25 am #

Hi There! Just thinking of you today and keeping you in my thoughts and prayers. I’m so glad she is a little better. Love, Laura M.

Kara on October 20th, 2008 at 2:14 pm #

Poor thing sounds like she is hyper sensitive right now. This too shall pass. Never quickly enough. But it did remind me of changing the girls diapers in the winter. They hated it so I would drape a cloth diaper over them during the process. I think it blocked the breeze a little. A bit tricky, but easier than the squirming and screaming. Ah, the squirming…. there was one point when I would have to lay them on the floor with a leg over their body and one on their legs to get them to hold still long enough to change a diaper. Funny stuff. I had forgotten about that till just now. They both did it too. Babies are strong!

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