There is nothing particularly easy about being a special needs mom, especially when you didn’t even know that was the path you were headed on. When that special needs diagnosis is compounded by life-threatening feeding issues, it is enough to make a sane mama, a bit frazzled. My friend Kimberly from KimberlyWyse.com shares some great tips for those who find themselves in just this spot. Her sage advice is perfect, 5 Amazing tips for moms of Gtube babies.
When my son, Redmond, was born a little over two years ago, we received a surprise diagnosis of Down syndrome, which also came with news of major medical challenges. We nearly lost him in that first few weeks of his life, and as Death breathed his rotten breath down our necks, we prayed with all our might that he would live.
Redmond defied all the odds and after 14 days on a ventilator, and a host of other medical interventions, he left the NICU after just 34 days. But during the time when he should have been following his instincts to eat, he was in a medically induced coma. He did not learn to suck, swallow, and breathe – so when the ventilator was removed, the NICU team inserted a nasogastric feeding tube (ng-tube) into his nose, and we set about the job of teaching him to eat.
That didn’t go so well. The ventilator had pushed up the roof of his mouth and he had a tongue tie that made it impossible for him to get the proper seal. He tried, but milk just dribbled out of the side of his mouth. Nursing him was impossible, which is still a heartache for me, so we switched to bottles. We turned ourselves inside out for months, first letting him take as much as he could from the bottle, then tube-feeding the rest. There were days when we didn’t do much except pump, sterilize the pump supplies, mix formula and defrost frozen breast milk into bottles with a 50/50 mix of each, warm the bottles, feed the baby, hold him upright for 20 minutes afterward to prevent reflux, and then do it all again 45 minutes later. We did that eight times a day.
We were determined to get that feeding tube out, but when he was eight months old, we finally agreed to a gastrostomy tube (g-tube). For a long time, we saw the g-tube as an admission of defeat, but it eventually became the best way to handle a challenge that wasn’t going to get better any time soon. The g-tube was the best decision because it made everything much easier.
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Redmond’s eating continues to mystify us, and at 2 years old he eats even less than he did a year ago. He’s struggled with other health issues that affect his eating, so we have learned patience. Weight gain has been a constant battle, just trying to keep him out of “failure to thrive.” We currently give him four high-calorie and high-fat bolus-feeds a day. Through it all, we’ve learned a few tips that I hope will be helpful.
- The feeding tube is not your enemy. Proper nutrition is essential during the first two years of a child’s life when they grow exponentially more than any other time. Under-nourished children can have stunted physical and cognitive development. Babies’ brains need dietary fat and calories to develop to their full potential. Whether your baby is fed by breast, bottle, or feeding-tube, FED IS BEST. We wasted a lot of energy in those early months despising the feeding tube, rather than feeling thankful that we had a way to feed Redmond.
- Accept the help you are offered – or ask for help! Especially during the early days of a tube-fed baby’s life, tube-feeding may be about the only thing a mother is able to do. But you need to take care of yourself and the rest of your family, so learn to ask for and accept help. Whenever possible, my husband took over the job of sterilizing the pump supplies, defrosting bottles, and feeding the baby. It was a huge learning curve for us both, and I had a hard time trusting him at first, but we figured it out together.
My mother-in-law and a couple babysitters learned how to feed him too. I wrote out step-by-step instructions so they had a reference tool. I would never have guessed it, but older teenage babysitters were awesome at tube-feeding. They were old enough to understand and follow directions and just young enough that they still thought they could do anything. You may feel like you’re the only one who can handle the complexity, but give those around you a chance to help. You might be pleasantly surprised.
- Don’t be too hard on yourself. How many times have I forgotten to unclamp the tube or fed the crib? After two years of tube-feeding, I’d expect to have learned my lesson, but I still forget on a somewhat regular basis. Once I hooked up Redmond’s overnight feeding with the cap still on the feeding tube bag!
Very early on, I was so anxious about it all that I never missed a feeding. I wish I could go back and tell myself that it would be okay to skip (or postpone) a couple of those 3:00 a.m. feedings. Typical babies aren’t on such a regimented schedule. As long as your child doesn’t have any medical reason not to miss a meal, relax a little. If you accidentally feed the baby at an incorrect rate, have to postpone a feeding because your schedule gets messed up, or the tube gets pulled out, give yourself some grace. In the long run, it’s probably going to be okay.
- Join an online support group. Let’s face it, you aren’t likely to pack up all your feeding supplies to go to an in-person support-group. In the two online groups I’ve found, I’ve learned about the best way to insert an ng-tube, how to best manage the stoma on a g-tube, what formulas to avoid, and ways to deal with people who don’t understand why your child needs a feeding tube. I’ve learned that lots of tube-fed babies have reflux and vomiting issues, and carrying a plastic storage container with a lid is the best way to keep the mess contained. I’ve learned even more than that just from interacting with the other parents and feeling the surge of joy when you see a photo of a child who’s graduated from feeding tubes altogether!
It took me a while to find the right groups, and when I did, at times I was overwhelmed by the photos and stories of problems other people encountered, so I offer this tip cautiously. As you get into a support group, remember that many of the photos and stories shared are examples of extreme situations. They are not the rule or those stories wouldn’t be shared. Typically, feeding tubes behave themselves, so I’d encourage you to scroll past those examples and look for the posts that are helpful to you.
- Gratitude. As the parent of a medically-complex child, self-pity and depression can be constant companions if we let them. We have a choice though. The best remedy I’ve found is gratitude. When I see other healthy, easy babies, I can get pretty pathetic. (It isn’t fair. Why does everything have to be so hard? Will I have to tube-feed this child forever? Why won’t he or she just eat? Waaahhh…)
The best way I’ve found to combat that problem is to shift my perspective and express some gratitude. For example: I have a solid roof over my head, I have my health, I have a beautiful baby, and I get the privilege of cuddling him. I’m so thankful to have a way to provide nourishment for this child. He’s getting the best possible start to life by having consistent, nutritionally dense foods, and his immune system is well-supported. Gratitude will keep you going during the most difficult times. If you really can’t pull yourself out of a funk, try sitting in the lobby of a children’s hospital for an hour or two. As children with significantly more complex issues go by on their way to their appointments, your gratitude is likely to return. (It works for me.)
Lastly, if you can find a little humor in the situation, that helps too. When someone looks at you strangely and asks why your child isn’t eating, smile brightly and say, “Oh, we don’t feed this one.” Offer no explanation and go on your merry way. When your sister with a million kids tells you that she can get him eating, shrug and hand the baby and the bottle to her. After she’s tried to feed him for 90 minutes and only one ounce of milk is gone, she’ll never mention it again and you can giggle about it to your heart’s content – when you’re alone.
Our life isn’t something that others can easily understand. Until you’ve spent your entire life just trying to feed your baby, you simply don’t know. So, to all the fellow tubie moms out there – keep it up! You’re doing a great job! You are the hero on a battleground that few can see; your hard work isn’t likely to ever gain you great honors, but I see you. Carry on, lion-hearted mama. You are a warrior.
Kimberly is a mom, a farmer’s wife, a minister, and a writer. She is active in her faith and her role as help meet and mother. She spreads awareness for Down Syndrome and encourages others. Be sure to check out her Facebook, Instagram and her blog to find out more.