Archive | May, 2013

Groovy once again

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.

  1. The consistency- meaning the Pediasure was too thick for her to digest
  2. The volume- the amount of liquid she was taking in at on time
  3. The rate- the speed rate set on the pump. It may have been too fast.
Daddy loving Gabi

Daddy loving Gabi

 

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.

Gabi hanging with her neighborhood friends

Gabi hanging with her neighborhood friends

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.

I love my Gabi

I love my Gabi

 

I also love my Marissa and Thomas

I also love my Marissa and Thomas

 

 

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.

Love, Teri

Ethan's artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

Ethan’s artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

 

 

Gratuitous picture of Marissa ready for her dance recital

Gratuitous picture of Marissa ready for her dance recital

 

Thomas

Thomas

Max and me

Max and m

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Weight Gain.. Is it the Holidays for Gabi?

It is early Saturday morning and the house is so quiet. In a few minutes I have to go to Gabi’s bed and turn off her pump before it starts beeping. This will start the day’s long routine of feedings for her.  We still haven’t found our groove and her quality of life sucks right now.  Cardiology tells me to get her up and moving to get stronger.  GI tells me to keep her still 5 times a day, an hour each time, to feed her via the pump. I feel like I am going crazier!

Last Friday, April 26th, Max had his 18 month (even though he was already 20 months) checkup at the pediatrician and I asked them to please weight Gabi.  She had been looking chubbier and bloated the days prior.  She weighed 30 lbs. 2 oz!!  Let me say, she was 26 lbs. 14 oz on April 18th, the day we started this crazy routine.  4 lbs in 8 days! What the holy heck?  too much.

Immediately I called into Gi and cardiology. Of course, I got a hold of cardiology faster and I was on the phone with the nurse for about 45 minutes. We checked her sats, her respiratory rate, her pulse, I pushed on her belly, we checked her ankles for fluid retention, we checked her shunt and her eyes but everything checked out OK.  Dr. Cava had stopped her last diuretic on April 8th, so they were super concerned of any fluid buildup, but no signs of it. I knew in my gut that it was the food.

GI’s response was to blame the scale.  They told me the scale must be off, and that there is no way she could gain that much weight in so little a time.  I was furious. I explained to them I could feel the weight when I picked her up.  I agreed to give it over the weekend to actually have a true comparison on the same scale. So, she was weighted 30. 2 on Fridy, the 26th. By that Monday, the 29th, she weighed 30 lbs 10 oz.  4 oz of weight gain a day!

Finally, the dietician agreed to take the food down a notch, only removing 2 ounces of Pediasure and the tablespoon of veg oil.  But they were still acting so surprise that she was gaining so much weight.

I agreed to give it a week on this new plan and see what she weighs the following Monday, which will be May 6th.

She has been throwing up and hates going on the pump.  It is awful. I have the pump rate set at 211 during the day and it seems that is the fasted I can push food into her for right now. This means, the pump pushes 211 ml’s of food (a little more than 7 oz) of Pediasure (diluted with water) into her stomach in an hour.  Her total amount of intake needs to be 771 ml’s of Pediasure mixed with 515 ml’s of water.  This equals about 42.8 ounces of liquid or  almost 5.5 cups. She is not tolerating this well. Neither am I.

Please continue to pray for my Gabi.

Love,

Teri.

 

 

 

 

 

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