As of today, May 29th, Gabi weighs 31 lbs. I am so happy with this weight! She has kind of leveled off and I think we have found our new, temporary groove.
She is taking in 2.75 cans of Pediasure 1.5 and 610 ml of water. 1270 ml total of liquid. This is 42.3 oz or 5.3 cups of liquid.
Last week, she was throwing up a lot and the dietician and I went through all probable causes.
- The consistency- meaning the Pediasure was too thick for her to digest
- The volume- the amount of liquid she was taking in at on time
- The rate- the speed rate set on the pump. It may have been too fast.
Lauren, the dietician, suggested I start with the rate and cut the speed in half… going from a rate of 235 ml/hour to about 140 ml/ hour. I strongly disagreed with her because she was already on the pump for over 6 hours a day… I was not going to increase that time!! She can’t move around and play like a normal kid which makes her weaker and her PT obviously wants her moving!
I changed the volume. It was risky. I went from 150 ml of Pediasure mixed with 150 ml of water to just 150 ml of Pediasure mixed with only 50 ml of water. It was like a milkshake. She took to it with no problem!! I have even been able to bump the rate up to 245 ml an hour on the pump so she can finish her feed in about 45minutes. I do have to give her boluses of water throughout the day via a syringe, but that is fine. the less time she is on that pump, the better! She hasn’t thrown up once since that change. Woot woot!
Now that we have this under control and her weight has stabilized, we will continue with this for about a month- but- I am ready for this girl to eat orally!!
I have been a stickler about her sitting at the table with us every meal and trying to eat something in the past few weeks. She doesn’t like it, but that’s tough. I’ve been so easy on her just thanking God that she is still here with us. Now it is time to improve her daily life.
I am applying to several feeding clinics and the evaluation process is going to be brutal but we’ll get there and the other kids are just going to have to suck it up and come with us to all these appointments. Maybe I can find a friend’s house for them.
I still have glimpses of feeling like a total failure but I am really trying to stop beating myself up. You want to know what makes me feel bad about myself? Facebook, Pinterest, mom blogs. I read other heart mom blogs where they are much more focused on getting their kid to eat. Their kids are potty trained and far exceeding Gabi at eating and physical abilities. I look back and think, maybe I didn’t try hard enough with her? Maybe I was too lazy? The excuse of having other kids wears thin real fast for me. I don’t like embracing that as an excuse.
I did read a blog that I think about all the time. Her post was entitled Drops of Awesomeness. Basically, we, as moms, beat ourselves up about all the little things. But when we do act completely selflessly and do something great for our kids… that is a drop of awesomeness that should not be overlooked.
There is a person in my life that is addicted to being miserable. No matter what good things happen, she always focuses on the negative. It is a lot easier to be miserable than it is to be happy. Happiness is truly a choice. And I pray everyday that God will help me see the positives and choose to be happy.
Thank you for any prayers you may have spared for my Gabi. She is once again doing well. And I know she’s going to make leaps and bounds this summer.