{feeding journey}

Ah, our feeding journey. Not an easy one I will tell you that. I haven’t shared much of our feeding journey, triumphs and failures here on the blog. Mostly because this has been an ongoing struggle of ours, one that has made me in the past want to pull my hair out literally!

In the past month, I can finally say I have seen some incredibly progress made and I have to credit that to perseverance and a whole lotta prayer! It’s not an easy road when you child has feeding issues, aversions etc. The progress we have made has been from sticking with it and trying it all! Any and all advice that seemed like it might possibly be helpful was taken and tried. Some advice resulted in complete failure while others produced positive outcomes for which I am thankful for.

My first blog post about our feeding journey with Bernadette can be read here. I briefly discuss how I had fully anticipated nursing her until she was a year old just like I had done with my other daughters. That is not exactly what happened and during those early months it felt like a huge loss to me.

However, I also know that she needed calories, as many as possible. Her heart was working so hard to pump blood throughout her little body and her calories were burning up quicker than she could put on the weight. Talk about scary times!

After her first heart surgery and to my surprise, I walked into the CICU post-op to find that she had a nasal gastric (ng) tube placed in her nostril. The ng tube is a thin long tube that is inserted up through nose and goes down to the stomach. It attaches to a pump that regulates the speed and volume of the milk. The nutrition goes straight to the stomach helping to get her the calories without having to work as hard to get them. Sucking, breathing, and swallowing is a lot of work!

I had hoped that once she had recovered from the first heart surgery I would be able to go back to nursing. That dream died also as she struggled post op to recover and was on high respiratory support. Her team allowed me to nurse for non-nutritive purposes for a couple of weeks but mostly she was getting her food from the ng tube. It was fortified milk that had extra calories to help her body gain weight, although because of the condition of her heart, it wasn’t helping much.

After her second heart surgery, she remained on the ng tube for a handful of months. Her suck was weak after heart surgeries and she was having a hard time coordinating.

She would hardly take anything by mouth and showed disgust for the bottle. I continued to try anything and everything to get her to take from the bottle or to nurse but was increasingly unsuccessful, especially following her hospitalization for RSV where all the progress she had made drinking from a bottle was completely gone.

I had a love/hate relationship with the feeding pump. I was glad that she was getting the food she needed but it was also such a pain. She suffered from reflux and vomiting after almost every feed. David and I were hardly getting sleep as we took turns feeding her around the clock playing around with shorter feed times vs longer feed times and everything in between as well as trying to keep her upright during and after feeds to reduce the reflux, but also getting up to clean up the vomit after the feed.

Needless to say, those months were extremely difficult. I just wanted my baby to eat and not to vomit everything out of her stomach. I wanted her to gain the weight she needed so she could start really thriving.

At 7 months, I initiated a tube wean.

***I am not a medical professional. The things we tried were under the instructions of our team of medical professionals. Please do not take this as medical advice. It’s important to talk to your child’s doctors and come up with a plan that is right for your child. Each child is different and every situation is different.***

The tube wean was rough. Bernadette had just started some solids and there was a lot of mixing solids with milk and special bottles to help get her used to taking all of her liquids by mouth.

David and I took turns sitting with her in her rocking chair for hours while she ate. Literally hours. Lots of tears, lots of homebound days because she refused to eat anywhere else. It was challenging to say the least.

Both David and I kept at it daily and our feeding therapist came weekly to see where we were at and to help make suggestions.

I pureed all kinds of food, we tried all different kinds of bottles, we did tons of mouth exercises. At the end of the day, it was all a struggle to get her mouth strong and coordinated, but we carried on.

Fast forward to a couple of months ago, a mama on Instagram saw one of my stories on feeding. She suggested thickening Bernadette’s milk as a smoothie to get her used to drinking out of a cup. And OH MY DAYS! What a HUGE difference that made.

She went from taking an hour plus to drink each of her three bottles a day {that’s over THREE HOURS of bottle feeding} to drinking her smoothie from a cutout cup in a matter of minutes with one small bottle at bedtime. Things in her mouth began to work better and she was getting her mouth more coordinated.

I am happy to report that finally at almost a year and half it has become way less of a stress to me. She is eating more calories. She is actually ENJOYING food and mealtime. And recently she has even started signing eat when she is hungry.

As many time as I wanted to throw in the towel or would call David throughout the day crying because I had been unsuccessful at getting Bernadette to eat, we all kept at it. And we have watched her succeed!

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