Tag Archives | feeling like a failure

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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New Feeding Routine

IMG_3347It’s been really… really hard.  We have successfully changed over Gabi’s formula to a new higher calorie, higher fat one called Pediasure 1.5.  I think she has put on weight already, so I know it’s good for her and it’s all going to be worth it.  But getting her off of night time feeds is going to be really difficult.

We are on step 2 of the list.  She is hooked up to a feeding pump 5 times a day for an hour each time. That is almost every other hour. AND I am supposed to try and give her some food for her to try to eat orally BEFORE each pumpIMG_3430 feeding!  If I have to go somewhere, and having 5 kids to tote around, I HAVE to go somewhere… all the time.  We haven’t found our new groove yet and it’s been tough.

The transition to the new food was tough too.  I did some research on how our body responds to higher fatty foods. Basically, because she was on a low fat, low calorie diet for 9 months, her pancreas and gall bladder weren’t doing much work.  Now, all of the sudden, they have been boosted up into turbo speed.  Everything will adjust, in time.  But the past week, she has been crying from discomfort and throwing up a lot… like 3 or 4 times a day. ANd of course, Big Ethan has been out of town. The GI nurse told me to stick it out and sure enough, things are getting better.  But we are not at her full feeds yet.

IMG_3429When she is hooked up to her pump, she is confined to a chair or to the table like this. We have been trying to use her Dora backpack and she can carry her pump on her back.  So far, she IMG_3379will wear this for a few minutes but it is heavy for her and cumbersome, so she asks to take it off.  It is constant.

AND to make things worse, Max, our troublesome 18 month old, is constantly trying to grab at the tubes and play with the buttons.  So I have to monitor things ALL THE TIME.  Maybe it’s a blessing we have this small house, then I can be more vigilant and hear things from one end of the house to the other. God planned that well.

It’s been a roller coaster of emotions going through these changes.  I am so so sad for her.  In the midst of all the vomiting and discomfort, she had to miss school and a field trip to a local farm to visit the beloved animals.  However- perspective- I know she is only 3, and she will be able to see many farms…

IMG_3432AND then there’s the ignorant comments that are so hurtful. I know most people just don’t and can’t understand.  But please don’t try and tell me just to try feeding her certain foods and then she will eat, or don’t try and tell me that the window of overcoming oral aversions closes after toddlerhood. Please don’t look at me and wonder why my almost 4 year old isn’t potty trained…and please don’t tell me that she has come so far and I should be so thrilled and overjoyed… because yes she has come far and yes she is doing well.  But she cannot keep up with her peers and she cannot eat and I am trying my hardest to teach her to use the potty and to eat.  And I feel like sometimes I’m not doing enough for her and like any other mother when their kids aren’t thriving, naturally, they feel like a failure.  It is very lonely. Motherhood is very lonely, but this is amplified by ten thousand.

But I trust in God’s plan for her and I know we’ll get there.  I like to document these trying times so that I can look back and remember and validate how far we have come.

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

 

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As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

 

The goal is to be at step 5 in 2 weeks.  We have to go really slowly…

Love,

Teri

 

 

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Easter eggs in the nic of time

I love reading blogs written by other moms.  I get lots of great ideas about parenting, crafts, organization etc.  I read and plan and really believe that I can pull that shit off sometimes.  Then reality hits and we eventually get things done but sometimes I feel disappointed in the way we were rushed or didn’t follow through on all of our plans.  It’s hard not to get upset when you read a blog about how some families colored their Easter eggs skillfully and prayed over each egg and then planned ahead of time in order to bring them to church to get blessed by the priest. It made me feel like a failure. And to top it off they have a beautiful photo display of all their special moments. But I am learning to keep the perspective.

So, let’s see… Easter falls on Sunday, right? Starting to color Easter Eggs on Saturday night at 7 pm works, right?  It does here.

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IMG_5864The Easter Bunny remembered to shop at her local Walgreens Saturday evening and managed to scrape together fun baskets…

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Of course we didn’t get a single picture of Easter morning with just our family but here’s one at Grandma and Grandpa’s.. Gabi looked so cute in her green dress. She was so excited to wear it.  And all the kids were bathed and had collar shirts on. Impressed?  you should be.

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We tried to get a picture of all 5 kids.  Here are the results. Max had already destroyed his collar shirt. He did have one on. I swear.  God love my son Ethan for trying so hard with Max.

 

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It was a wonderful Easter!  We did make it to church but we had to stand in the back.  We weren’t even late but both the church and the parish center were packed. Nice to see lots of people celebrating Our Lord’s resurrection!

Happy late Easter and Happy Spring!

Much love,

Teri

 

 

 

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