During our adoption’s process, we had a facebook page where family, friends, and others followed along and offered words of encouragement and excitement.  After Baby #4’s homecoming and when he was finally deemed legally ours (a 60 day wait here), I decided to take it down.  Afterwards, we were humbled by the large amount of interest from others requesting that we continue our journey online, document our first year, and someone even suggested a blog.  At that time, I really wasn’t having any of it.  From social workers, to the public nature of our facebook page, I was literally sick of everyone being a part of our business.  Although I am still leery about sharing too much information about our family, I now feel more confident in our place as a family, and in my position as a mother of four young children.  I also feel like we have things somewhat under control as far as Baby #4’s health is concerned; it’s prodromes are what I wanted to share about in the event that others have children struggling with similar symptoms…

Shortly after Baby #4 came home, he started to have PROFUSE bouts of SEVERE vomiting; like nothing I had EVER seen come out of a baby before.  Always they were unexpected and sporadic, sometimes waking him from his sleep.  Additionally, he was very constipated (sometimes taking up to seven days to have a bowel movement); something that was very unfamiliar to me since I recalled my others having explosive and frequent diapers as babies.  Since we were giving him formula from the hospital until I had time to look into the best sources of milk, bottles, etc. (we literally had about two weeks to get things together before he was born!!), I initially chalked it up to the formula being the culprit of his problems.

Having a background in nutrition, I knew breast milk could possibly ease his constipation and calm his tummy, so I set out to search for a donor.  If you are looking for a donor, we had much success with Eats on Feets and Human Milk 4 Human Babies; both of which have facebook sites connecting donors with babies.  You could also check your local hospital’s milk bank (if available).

Although we found a donor right away for Baby #4, the supply received was initially slim forcing me supplement with formula.  I decided to go with a Baby’s Only formula.  Not only are their products organic, they give a large discount to those families feeding a child with disabilities (regardless of your income no less), AND ship it to your house for FREE (provided you buy a case)!!  In most circumstances, I am not an advocate for formula use of any kind; however this most certainly was the best possible alternative for our family at the time.

During feedings, we used half breast milk and half formula in a Tommee Tippee bottle.  Throughout this whole ordeal and to up until nine months old, we also bottle-fed frequently; at every two hours with exception to the nighttime (where he slept with his mattress slightly tilted).  We thought that regular feedings would decrease Baby #4’s bouts of vomiting; some days it did and some it didn’t…

As much as I wanted my nutritional concoction and schedule to be the answer to Baby #4’s feeding difficulties, it was not.  Many times I called and/or took Baby #4 into the doctor hoping they would look more closely into digestive conditions associated with Down syndrome.  Specifically, I brought up the condition duodenal atresia (my husband calls me Dr. Google) to our pediatrician.  Since Baby #4’s growth was steady (for a somewhat premature infant with Down syndrome), and since Baby #4 was/is such a mild-mannered baby, she did not feel motivated to look for other diagnoses.  Instead, she offered reflux medication to trial.  I am not swayed by the promises of medication, fortunately or not, and refused to try that route.  I had many reasons for this.  For one, reflux medication has the potential to cause MORE constipation…yeah, just what I needed.  And when I looked into its use further, I noted that studies are not conclusive as to the efficacy of reflux medication in infants.  Since I was getting nowhere fast with my requests for other tests, I hoped that eventually he would just grow out of his circumstance if it was IN FACT reflux.  As the months went on, it seemed like the HORRIBLE vomiting was getting better, or at least less frequent.  Although its color was getting a little nastier…

puke

Days past, and eventually, I was able to find the most generous breast milk donors for Baby #4 allowing me to switch him over solely to breast milk (Baby #4 had SIX generous donors which helped him get through almost the entire first year!)!  Baby #4 was getting older now and things seemed to be looking up.  With just breast milk in his bottle, the vomiting was becoming less frequent and seemed to only wax and wane.  When I started to add foods to his diet at around nine months, the puking became more like a drain of food from his mouth after eating instead of a profuse fountain.

Despite the slowing of symptoms, friends and family continued to share my concern regarding the historic frequency, amount, and force of Baby #4’s puking spells.  With others’ opinions on my side, I again confronted our pediatrician asking her to look deeper into Baby #4’s symptoms.  Annoyed with me perhaps, she referred us to a Children’s clinic for an upper GI imagining study.  Within 10 minutes of the dye entering Baby #4’s stomach, the radiologist could see that the liquid was not emptying appropriately into his small intestine.  He assumed the heniously slowed flow was due to a variant of duodenal astresia (sound familiar??), which most certainly meant a very invasive surgery and fairly long hospital stay….  (I will document the surgery in a later post, as this is getting quite long.)

surgery1

Since surgery, I must say, things are getting better here.  I am completely encouraged by my instincts and support from friends and family regarding Baby #4’s health issues.  By writing this, I hope you will also be motivated to diligently pursue issues that your child may be having.  YOU live with YOUR child.  I knew something was wrong with Baby #4 from the time we brought him home.  At over TEN months old, Baby #4 FINALLY was able to get the surgery he deserved and was needed to function appropriately as an active baby.  Baby #4 is delayed, I am sure partly because of his Down syndrome, but also because he refused to sit for the longest time. (I often think how that fullness must have felt to him.  The pressure in his belly may have been unbearable.) Your child’s health and well-being are important aspects to their overall success.  Do NOT take your intuitions for granted.  Be proactive.  Be factual.  Be persistent.  Be assertive.  All your child has is you. ❤

4 thoughts on “Feeding Dilemmas

  1. I feel like, even though I don’t know you at all, you must have been crawling around in my brain today!! We aren’t having feeding issues, but we ARE having pooping issues with our 7-week-old girl and I have been struggling all day with my balance between being perceived as a pushy mom and trusting my pediatrician. I need to be an assertive mom today and you have inspired me. Thanks!

    1. So nice of you to say! When Baby #4 was having constipation issues (concurrent with vomiting), our doc kept blaming his Down Syndrome for the constipation specifically, citing it as a typical problem in people having Down Syndrome. Now that his digestive issues are figured out, we have absolutely NO constipation problems. Hopefully your baby girl’s problem is not severe. If things eventually check out okay for her and you continue to have problems with constipation, you may want to look into food intolerances (which I’ve read are somewhat prevalent in people with DS). Best wishes on getting ANSWERS, and CONGRATS on Baby Girl!!! 🙂

      1. Thank you! Sorry if this is TMI, but rather than constipation, we’re having diarrhea problems…. It’s been two weeks. :-/ She’s still gaining weight and eating well, so I just don’t know!!!! I’ll keep searching… I’m not buying that it’s a stomach bug.

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