G tube & bottles

It has been a while since I’ve done an in-depth discussion about Harper and bottle feedings so I thought I would do a little update.

The most common questions we get asked are

(1) How long will Harper have her g tube?

(2) Does she take a bottle?

(3) Can you feed her real food through her g tube?

For the first four months of Harper’s life, she was medically not allowed to take anything by mouth. Her esophagus was a third of the size of a “normal” newborn’s esophagus. So if you were to give her milk by mouth, it would overflow into her lungs or out of her mouth. She had three surgical esophageal dilations to make her esophagus wider.

During this time, Harper also developed an oral aversion- meaning she didn’t want anything in her mouth, not even a pacifier. By the time Harper was four months old, she had been intubated 5 times. Could you imagine having a sore throat for a couple of days, every single month?

For four months Harper could not and would not put anything in her mouth. Newborns breastfeed or bottle feed within the first hour of being born. Harper couldn’t swallow for the first three days of her life because she had a suction tube down her throat (Harper had a te fistula that was repaired when she was three days old).

At the beginning of August (when Harper was 6 months old), we started seeing a speech therapist. We started to introduce a pacifier and a bottle and Harper slowly started to like both. For three months, we were finally heading in the right direction. But, in October, Harper started to get sick. Her nose was stopped up and she was coughing a lot. She started to develop an oral aversion again.

In December, Harper was admitted into the hospital for 30 days. During that time, she was intubated 4 times. When we were discharged she didn’t want anything to do with a bottle or a pacifier. So, we started speech therapy over.

Here we are, four months later and Harper is slowly starting to like pacifiers and bottles.

So, how long will Harper have her g tube? Honestly, probably for the rest of her life. Say Harper decides to take everything by mouth and we have to give her a medication that she will not take. Her g tube is a backup. What if she gets intubated and develops an oral aversion, we have her g tube as a backup until she wants to eat again by mouth.

Does Harper take a bottle? Short answer, yes. I can put a bottle in her mouth and she will suck one or two times. Realistically, it would probably take Harper two hours to drink a half an ounce of formula. When Harper takes a bottle, even a slow flow nipple is too much liquid/milk coming out at once. Therefore, when she sucks, she freaks out because there is so much milk in her mouth and she doesn’t know what to do.

As far as real food, yes, we can feed her food through her g tube. When Harper turned one, we started feeding her blended foods. Blended foods are prepackaged foods that are blended to be able to put through her g tube. There are a variety of blended foods so it will take a few months to figure out what Harper will tolerate. Once we figure out what she tolerates, it will take another couple of months for insurance to approve our monthly shipment and our supply company to get it in the system. If you’re interested in what blended foods are, here are a few: RFBHarvestNourishCompleat. We can also blend our own foods at home. But, that requires a lot of calorie counting and making sure she is getting the proper nutrients. So over the next year, we will see what Harper likes and will tolerate.

In the end, we love Harper’s g tube. It allows her to get all the food she needs to live. She is currently is getting fed 105 mLs (a little over 3 oz) of formula, every 4 hours, over 45 minutes. We see a speech therapist weekly and we spend that time putting different pacifiers and bottles in her mouth to see how she tolerates them.

If you have any questions, please leave them in the comments or feel free to email us!

thejohnstonsblog@yahoo.com

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