Resiliency Comes in All Sizes: Breastfeeding
a Baby with Down Syndrome (Part 2 of 2)

Resiliency Comes in All Sizes: Breastfeeding a Baby with Down Syndrome (Part 2 of 2)

Categories: Breastfeeding Today

By Sabrina Woosaree-Hazlett – Edmonton, Alberta, Canada

The following is the second half of a story spanning two issues of Breastfeeding Today. (For part one, click here to view it in our April issue.)

Now 34 days old, my sweet little boy had already proven himself to be an overcomer! But there were still challenges ahead for Bhavin and me: overcoming his low muscle tone and sleepiness, slow weight gain, weaning from a nasogastric tube to bottle of expressed breastmilk, weaning him from bottle of breastmilk to breast, and more. We were both learning to take things one day at a time. And my journal was filling up fast with feeding-related notes on everything I was learning.

Overcoming oral fatigue

One important thing I learned about children with Down syndrome — or any children with low muscle tone or heart issues, for that matter — is that oral stimulation and feeding are really hard work. This is their exercise and as with any exercise, you must watch for signs that they are getting too tired, such as a decrease in the strength of the suckle, decreased milk intake, increased breathing and/or a warmer body temperature.

Ideally, you do not want to wait until the baby has a damp back from sweat to stop oral stimulation. The quality and quantity of suckles I believe are better indicators for when to stop. Remember, you don’t want the baby to overtire because the next feed is just two to three hours from the beginning of the last feed.

Little by little, stronger and stronger

My recollection is that each nasogastric (NG) tube feeding session was 45 minutes long, and he increased his feeds 5ml at a time, from around 5ml to 40ml.

When he reached the 25-30ml mark, Bhavin was given a bolus challenge. A bolus is a medical term for a specified amount of fluid given over a specified amount of time. For Bhavin, the hospital staff tested him with a shorter feed time of 30 minutes, to mimic the length of an actual breast or bottle feed. Every time they tried to shorten his feeding time, he vomited. After many instances where he did not tolerate 30-minute feeds, I made the decision to temporarily abandon this goal in favor of increasing his intake amounts.

When he got more comfortable with NG feeds — as shown by no spit-up 30 minutes after the previous feed — I began holding him at the breast, skin-to-skin, while the NG tube was infusing breastmilk into his stomach. Hospital staff got him up to around the 45-50ml mark. He was then ready to be transferred from the neonatal intensive care unit (NICU) to the regular pediatric unit of the hospital.

Moving on up: from NICU to pediatric unit

In the pediatric unit, we didn’t have one-on-one time with the unit nurses like we did in the NICU. The primary goal of the nurses on the pediatric unit were to wean Bhavin off the NG and get him onto a bottle of breastmilk. And this time, they wanted to use a gravity feed instead of an automatic pump. They explained to me that it is more natural to use a gravity feed instead of a pump because his body can respond better to fullness compared to a pump. Up until this point, my only feeding involvement with Bhavin was to provide breastmilk and the NICU nurses would feed him with the automatic pump. On this unit, I started doing all the feeding myself. Thus, started my detailed record-taking of his breastmilk intake.

All these changes felt overwhelming for me, and it took me about two weeks to feel comfortable with less direct nursing care. Looking back though, it was the right decision. We were both ready to start nurturing each other back to health.
 

Feeding Phrases

What in the world is a gravity feed? And how does it compare to an automatic pump feed?

A gravity feed looks a lot like an IV bag, only it is connected to a nasogastric (NG) tube. It is a feeding delivered through the NG, but you control the flow with a valve instead of an automatic pump. The pressure to move fluid through the line is not forced but by gravity, meaning it is affected by changes in bag height or body position which can make the flow go slower or faster than the valve’s current adjustment. This method most closely mimics the natural filling of the stomach during a meal or snack.

With an automatic pump feed, you get the same flow regardless of body positioning or feed height. The flow rate stays the same and the feeding is consistently infused; this remains unchanged regardless of activities performed.

 

Encouraging my little sleepyhead to feed

Even though Bhavin was not as sleepy as before, he still spent almost all day sleeping. For example, he could suck on the bottle for only a few sucks before falling asleep. As I had been working hard with slowly increasing his endurance for suckling with a soother, his active oral stimulation time was five minutes long. So, I introduced the bottle instead of the soother, and he was put on a specialized slow flow nipple. I fed Bhavin until he showed signs of slowing down between each suck and his body felt slightly warmer. I infused the remaining breastmilk via his NG tube, while holding him skin-to-skin. Then, for an additional 30 minutes, I continued to hold him skin-to-skin and upright, to ensure he did not reflux or spit up.

After lying him back on his bed, I started my pumping routine, and then tried to rest until the next feeding time. At the start of the next feeding time, I would put him to my breast with the nipple shield for five minutes, and give him the opportunity to do what he wanted to do. The expectation of him being at the breast was for him to get used to the closeness, comfort, and smell of me, not to suckle. If he did suckle at the breast, it was a good thing. If he was not able to, I didn’t worry because it wasn’t his goal yet to obtain any of his nutrition from my breasts. Then I would bottle feed him and start the process all over again.

The process was grueling, and I was sleep deprived, but it was possible. I handled all the feeds, and would leave the hospital in between feeds for only hours each day to see my husband and other children at home. Otherwise, I lived at the hospital alongside Bhavin.

Conquering slow weight gain

I could see that his weight gain was slow.  Every day, on the patient communication board that hung on his bedside wall, Bhavin’s weight was written by his doctors and nurses. Some days, he didn’t gain any weight, and I worried. For him to go home, he needed to gain weight daily. I noticed as his weight gain was slow, so was the overall size of him. Before he could handle the amounts the nurses hoped for, I would need to be patient and wait for his stomach to grow along with his body. Despite these thoughts, I didn’t stop putting him to breast. Any suckling he could do at the breast was a success in my eyes.

I remember a pediatric registered dietician wanting to “calorie-load” him by mixing formula with breastmilk. I tried this but noticed his next feed volume was reduced, possibly due to the length of time it took to digest formula versus breastmilk. I did not want him to go longer between feeds and brought this up with his pediatrician who specializes in children with Down syndrome. She told me to not worry about ensuring that he got the concentrated higher calorie mixture. She said to continue with the breastmilk because it was good for him and that he was gaining weight, not losing it. She emphasized that the comparisons being made were based on typical newborns born at full term and that he was premature, has Down syndrome, and was even smaller than her other newborn patients with Down syndrome. She reassured me that he was on track and doing well.

And the pediatrician was right! As week after week passed in the hospital, I noticed Bhavin becoming slightly more awake. Almost like nature’s clockwork, when he reached his gestational age at 38 weeks, he began to have sleep and wake cycles like most newborns. He didn’t wake on his own for all the feeds, but for even just one or two of them, that is a success. I started to train him in the hospital to drink from a bottle while the NG was still left in place. After nearly six weeks in hospital, he reached his minimum goal weight and was able to go home with an NG feeding tube. At discharge from the hospital, I think the maximum breastmilk that he consumed via the bottle was just 5ml, and the rest of his feeding was infused through a gravity NG tube. Bhavin was still little at discharge — just 5 pounds and 9 ounces — but fierce!

From feeding spreadsheets to NG-tube free!

So happy by then to be home, I asked a home care nurse to come train me on how to remove and reinsert the NG tube for Bhavin. I kept a detailed Excel spreadsheet with the time, length, method, and milliliters of breastmilk he drank, similar to what I had recorded at the hospital. It made it easier to explain how he was doing to the pediatric home care and health nurses that visited us. It also helped show his doctor how he was doing. This helped the doctor determine if the feeding amounts were helping him gain weight, or if I needed to go back to calorie-loading his feedings.

Bhavin’s doctor told me that I didn’t need to write everything down. She also encouraged me to feed him up to the amount he wanted. She suggested that I let him wake for his feeds instead of me waking him.

This made me nervous because I knew he still slept a lot. Tracking his feeding made me feel like I had more control of the situation because I had numbers to analyze. So, I decided I would follow the suggestion of letting Bhavin take the lead, feed him on a demand schedule, and let him take in as much as he liked. But I continued to track his breastmilk intake amounts. Bhavin was weighed at one to two week intervals by his home care, his doctor, health nurses, and everybody that we visited or who visited us! He continued to grow and steadily gain weight, becoming more wakeful, and started to have quiet awake periods. He was doing well!

After analyzing my records, I saw just what I suspected I would. Bhavin’s feeds per day were fewer than previous. Instead of eight feeds, he awakened on his own for just five or six of them. I let his doctor know and she was not concerned. She said to continue, and that we would watch his weight. She reminded me what she had told me when I was pregnant with him: “The best-kept secret about babies with Down syndrome are that they are the best sleepers.” She reassured me, “He needs more sleep.”

So, I began feeding him when he awoke. If we were approaching the end of a 24-hour feeding period and he had only five feeds in, I would wake him up for a sixth. After nearly three weeks of demand feeding and allowing him to take the amount that he desired, his weight was up and steady. Also, the feeding sessions were getting shorter, from 45 minutes to around 30 minutes!

The next time we saw Bhavin’s doctor, she said the NG tube could come out and stay out. My tough little boy had “graduated”; he was by then consuming most of his feedings from a bottle of breastmilk, with very little remaining that needed to be infused by an NG tube. I was so elated. No more reinserting the NG tube and dealing with the tape that gave Bhavin an allergic reaction! His one nostril was slightly stretched from the continuous placement of the NG tube, so that one nostril was visibly larger than the other one. Also, his baby cheeks were red and sometimes had sores from all the adhesives used. (I did worry that his nostril would stay stretched, but it didn’t!)

Tossing the spreadsheets: Weaning from bottle to breast

The day the NG tube came out and Bhavin was exclusively fed breastmilk by bottle, was the day I stopped recording his breastmilk intake and feeding times. It was such an emotional and happy time because the possibility of him staying on the NG tube had been very real.

At this point, my feeding regime for Bhavin was relatively unchanged except there was no NG tube feeding which meant more sleep for me! The one thing I did change about the bottle feeding was the nipple flow on the bottle, from a specialized slow flow (the slowest one I could find) to a medium flow nipple. I needed to know if he could tolerate a flow more similar to my own breasts, because I am unique in that I have very strong letdowns, which could overwhelm him.

What really helped me was knowing and recognizing the various signs of satiety and hunger in a newborn. My nursing experience, and experience previously breastfeeding my other children, taught me that these signs are applicable to any newborn, regardless of the feeding method.

I started every feeding at the breast and used a nipple shield to coax my nipple to maintain its shape. With nipples shaped nearly flat and larger breasts, brought additional challenges with breastfeeding, but nothing that couldn’t be resolved with a few little adjustments. I would sometimes test his ability to take areolar tissue in his mouth for breastfeeding by removing the nipple shield. If that was not successful, we simply went back on the nipple shield, and I would try another time. Sure, the nipple shield was annoying, and all the sterilizing was exhausting. But I reminded myself: at one time, getting to this point was just a dream.

Due to his muscle tone, small stature, small mouth, and slow development, Bhavin did not have the endurance to breastfeed exclusively yet. I still topped him off with approximately an ounce of breastmilk from a bottle after each feeding. Slowly, he took in less and less breastmilk from a bottle. The day he took only 5ml of breastmilk from a bottle after a breastfeed, I did four more feedings to ensure that this was not a rare event. Then I stopped feeding him by bottle.

Reaching my goal of exclusively breastfeeding

I will never forget the age: five months old. That was how old Bhavin was when he stopped needing to use a bottle of breastmilk, and was exclusively breastfed. I could not have been happier. I was sleeping more. Bhavin was developing on his own growth curve. He was healthy and gaining weight, just like any other 3-month-old baby. I say 3-month-old baby because in Bhavin’s physical development, that is right where he was expected to be as a result of his Down syndrome.

Throughout this feeding journey, Bhavin showed incredible strides in resiliency. He taught me to enjoy life at a slow place, and to watch for little opportunities for joy at every step of the journey — even during trying times. I learned to celebrate little successes, no matter how small. I also increased my resiliency and determination skills a hundred fold, which has benefited me in every other facet of my life. In fact, Bhavin and my journey led me to pursue additional studies to become an accredited La Leche League Leader. And I have been loving helping other families in this capacity for nearly three years now, thanks to this little guy who served as my initial inspiration.

 

Sabrina is a dedicated La Leche League Leader in Alberta, Canada, and she has never lost her sense of urgency to help other parents in need. A registered nurse, she also blogs and is a vocal advocate for children’s mental health, child development, and developmental disabilities.