Wednesday, May 11

Feeding Woes

Hand to Hold is a local non-profit that I've talked much about before. They have a special place in my heart for many reasons and I'm always happy to help them when and if I can. Yesterday, they asked me to write a little something about our feeding issues for an upcoming project their working on. As I began to put the summary of Bryce's feeding issues down on paper it occurred to me that perhaps I should share with all of our readers as well.

Many of you and most parents can't appreciate the struggles related to feeding babies that have been intubated and/or hospitalized for long periods of time. It's hard for the parent of a normally developing child to really get the stress but I think most can imagine that they'd be terrified if they couldn't be sure their child was getting enough nutrition, enough fluid, enough nourishment to not only thrive but just to survive.

This is a very real problem for many parents and this is our "feeding story:"

Bryce's extreme prematurity meant that at birth he was unable to breathe on his own. He spent five long months in the NICU at Dell trying first to survive, second to breathe independent of equipment and finally to nourish his body with my milk.

It would prove to be breathing that would be Bryce's biggest challenge. It took four months on and off various ventilators before he was finally successful on high flow nasal cannula. Of course, as all preemie moms are aware, that just meant it was time to face feeding - no small hurdle in itself.

After being intubated with a breathing tube for so many months Bryce's "suck muscles" were weak and trying to feed from me or a bottle took so much energy that he would tire out well before filling his belly. We supplemented with tube feedings by way of an NG tube for weeks while trying to build his eating strength and coordination. We were grateful that he rarely aspirated while feeding but as time wore on it became obvious that if we didn't take Bryce home with a feeding tube he would either remain in the NICU for the forseeable future or end up catching some nasty hospital bug.

So we swallowed our fears and began our NG placement training. There really is nothing worse in our books than holding your infant son down while shoving a tube up his nose, down his throat and into his tummy. Oh and be sure not to hit the lungs, which is really just luck (especially since he's screaming the whole time), because then when you start the feed you may drown your child. Not sure if it's in the lungs or stomach? Well when you're in the hospital under strict supervision for placement you just take a quick listen with the nearest stethoscope but when you mention buying one for home use your reprimanded for being to NICUish and not enough Mom-ish. Oy vey.

It's easy to laugh off the stress of the ordeal as we look back now but it really was a true test for us. We now compare all things to the torture of placing an NG tube - ALL things.

Hand, foot and mouth disease, suppositories, baby puke and diaper blow outs all pale in comparison. If there were such a flag that read, "If I can place an NG, I can do anything," I'd proudly wave it high. I'd even get one of those cheesy mini flags for my car. Maybe one for Caleb's truck too.

Eventually though they let us take Bryce home with us and just like all the cliches you hear, he almost immediately began to grow bigger and stronger. After just a few short weeks at home we took out his NG tube, for what would turn out to be forever.

We hardly followed the book, or the doctor's advice for that matter, when we decided enough was enough. But it was the holidays and we felt that as Bryce's parents we knew him better than anyone. So together we made the joint decision to pull the tube and hope for the best. We could only pray that lacking those extra calories he was getting through the tube his desire to eat enough on his own would kick in. And thank the Lord, it did.

We were blessed and oh so grateful to place it finally away in the medical keepsakes box where it remains today.

(Yes, we have a medical keepsakes box. And it's full of blood pressure cuffs, hospital ID tags and myriad other odd momentos. No, I don't know what I'm going to do with it so for now it just stays safely put away in the closet. Yes, I know that's weird. And, no I don't care!)

Of course, our feeding struggles by no means ended the day we decided Bryce would no longer get supplemental feedings by way of NG tube. But we know enough to know just how lucky we are that Bryce's oral aversion was minimal. He always liked pacifiers, seemed to enjoy taking his milk from a bottle and overcame a texture issue with stage 2 foods in just over a month of daily trials.

We're painfully aware that this isn't the case for all parents but that is why Hand to Hold is so important. Because they have the unique ability to put those parents together and let them explore possible solutions, vent about frustrations and take solace in knowing they aren't alone.

I can only hope that our story will help another family along the way.


  1. I know too well the horrors of the ng tube; both of our twins came home with them. Cade had his for 9 long months. There is nothing worse along the lines of torturing your child than that. Maybe parents should threaten children with that. Be good or I'll shove an ng tube down your nose. Children would be very well-behaved all the time!

  2. Hi. I found your blog from a simple google search. My sister just last week had her son at just 24 weeks 3 days. With amazing stories like yours, it helps her...and us (as family) get through day by day. Thanks for sharing your story. her story is here...

  3. Great post! I could've written the exact same post with our son's story!

    1. Ashley - Thanks and thanks for stopping by! Do you have a blog for your son as well? I hope he's doing well!

    2. Katrina--we are just now in the throes of dealing with feeding issues with our 35 weeker who for other health reasons was intubated for close to 5 weeks. I came across your story after a simple google search linked me to you, and could use some commiseration around what has been a really tough two weeks of PO feed attempts. What's tougher still is that medically our little one is fine, thank god, and this feeding business (plus the slight whiff of morphine she is still on) is what is standing between us and the NICU door. Any advice or words of wisdom? As the baby's advocate anything we should be asking or pushing th doctors towards? Thanks so much for sharing your experience. Sara Kerr,

    3. Sara,

      I'm so glad you contacted me! I know it can be hard to reach out sometimes but what you are going through right now is quite likely the hardest thing you will ever have to endure. We all deserve to have someone who's been there in a time like that. First let me say, congrats on your baby and for surviving two months in the NICU. That is no small feat.

      I wish I could say that there was a magic bullet that solved the feeding issue for us but there wasn't. I believe today that we took some risks and got incredibly lucky. Had I known then what I know now, I'm not sure I would have taken those same risks.

      Essentially, we decided, along with our NICU team, to bring Bryce home on an NG feeding tube. He was taking about 50% of his feeds by mouth but breastfeeding and bottle feeding wore him out. His muscles were just too weak from all that time being intubated. (The risks came along later, when we decided to self wean him from the feeding tube at home.)

      Ultimately, we decided that it was better to have him home on a feeding tube then for him to stay in the NICU and risk infection, or worse, getting NEC.

      And this would be my advice to you - ask for a care conference (you are entitled to sit down with your nurses, nurse practioners and neonatologists) and voice your concerns. Don't worry about hurting anyone's feelings but be conscientious as the old saying about catching more bees with honey goes. Ask them what exactly you need in order to go home and set up a plan that everyone is aware of. If they are hesitant, respectfully remind them that NEC is a very real and serious concern for all babies in the NICU and the longer your baby is there the higher the risk.

      I also have to warn you though, that if you go home with an NG tube there is a good chance you may be dealing with it for awhile or end up with a G tube. The NG tube at home was without a doubt the hardest thing to manage, it was a constant source of stress and concern BUT having your baby home is amazing. And studies shows that babies thrive in a home environment. Odds are some of the feeding issues are related to being in a hospital setting, despite their best efforts, NICU's are loud, hectic and stressful places for everyone there. There is nothing better for a baby than to be surrounded by the love and comforts of home.

      If you end up going down that road, and if you don't, please stay in touch. Don't hesitate to contact me anytime. The one thing missing from our NICU stay was another NICU graduate parent to lean on. I don't wish that on anyone.

      Also, as your baby grows and moves on to foods there might be some issues again. I know lots of mommas who have dealt with those (we thankfully had very little issue with introducing solids) as well as G tubes and have come out the other end. I know they would be more then happy to chat with you as well.

      If you get a second - send me a picture and your babies name. I'd love to see her!

      Good luck and many blessings,


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