The Breastfeeding Diaries: Stefanie from Lexi Loo, Lily, Liam, & Dylan Too

October 15, 2014

 Hi, my name is Stefanie and I blog over at Lexi Loo, Lily, Liam, & Dylan Too. When I found out baby #4 was on the way, I didn't even think about whether I would breastfeed or not. I knew I would.

After nourishing 3 children, I knew what choice was right for us. My firstborn was formula fed, with no regrets, and my next two were exclusively breastfed. Breastfeeding was convenient and free!

With my first pregnancy, I wasn't sure if I would breastfeed or formula feed. I decided to keep an open mind and decide at birth. After preterm labor, weeks of bed rest, weeks of grieving, a long labor, and giving birth a month early, I was mentally and physically exhausted. When the nurse asked if I was going to breastfeed or formula feed, I said formula without another thought. About a week after we came home, I was curious. I tried to get my son to latch on, but he didn't want to. I never tried again, and never regretted it. My son was always very healthy and very smart. He's nearly 10 years old, and rarely gets sick. Formula feeding worked well.

When I was pregnant with my second child, I knew I wanted to give breastfeeding a try. I was a rookie. Even with the help of a lactation consultant, I wasn't prepared for just how much it hurt! During a particularly horrible night in the hospital, I decided to quit, and I gave my daughter a bottle. Once home, in a more relaxed setting, I gave it another try. It worked, the pain eased, and I exclusively breastfed my daughter until she was 11 months old. Our breastfeeding journey came to an abrupt end after I had a medical procedure done. My daughter was unable to breastfeed for 24 hours, and she refused from that point on. I was bummed, but still proud of how long we went!

Four years later, when baby #3 was born, she latched on immediately after birth. I knew exactly what to do and it barely hurt. Our breastfeeding journey was easy from the start and she nursed until she was 14 months old. Sadly, I can't even recall the last time I nursed her. She gradually weaned until she just wasn't interested anymore.

Two months after she weaned, we were very surprised to find out baby #4 was on the way! Thankfully, I was healthy and still taking the remaining prenatal vitamins from my recent breastfeeding days. Other than the awful morning sickness I had until the day I delivered, which was exactly like my previous pregnancies, my pregnancy was uneventful.

I went into labor three weeks before my due date. In between the awful contractions, I was giddy with excitement. My husband and I argued names and took bets on whether the baby was a boy or a girl. We couldn't wait to meet him or her!

When our child entered the world, my husband cheered, and shouted, "It's a BOY!" We cried and hugged, but we were surprised when the doctor immediately handed our son over to a nurse instead of handing him over to me.

The room was eerily quiet for what felt like an eternity. Our son wasn't crying and medical professionals crowded around him. Nobody would answer our questions or let my husband come over to see him. The room finally emptied, and the remaining nurse handed our son to me and walked out the door. My sweet baby boy stared into my eyes, and I just KNEW. My heart plummeted and my world came to a crashing halt.

Sure enough, a doctor eventually walked in and explained that he and another doctor believed our son had Down Syndrome, based on a few physical characteristics. Our son was whisked away for testing, and we were left alone to grieve the loss of the child we thought we were having and accept the new life we were given.

The memories of that day are foggy. I remember the feelings, but I can't remember the timeline. At some point, Liam was back in my arms, and in that fog, it registered that I had to feed him. I lifted him to my breast, and tried to get him to latch on. I remember staring down at him and watching my tears drip onto the top of his head.

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After a few minutes, it was evident that breastfeeding him was not going to be easy. He was so sleepy and his latch and suck were so weak. The lactation consultant came in, smiled, told me it was obvious I knew what I was doing, and walked back out. I wasn't sure how to feed a child with Down Syndrome and I felt completely helpless.

I fell in love with my son in the wee hours of the morning. As I stared into his eyes, the fog and the grief lifted. I vowed to love him and protect him, and give him the best life I possibly could. Once again, I lifted him to my breast and I just kept trying to get him to latch on and stay latched on. We did it over and over again until it was time to leave the hospital. I was determined to make it work.

When Liam was 2 weeks old, it was confirmed that he had Down Syndrome. I wasn't surprised.

The first month was a struggle. When he was a few days old, we went to the doctor for a weight check. He was still under his birth weight. We returned a few days later, and he still hadn't gained any weight. Getting him to wake up to nurse was very difficult. He just wanted to sleep all the time. His weight started to plummet, so we returned to the lactation consultant to get a supplemental feeding device. She made sure he was nursing properly (he was) and showed me how to use the device.

Every time I breastfed Liam during the day, I used the device, filled with high calorie formula. At every feeding, he got breastmilk and formula at the same time. He continued with the weekly weight checks and his weight continued to drop. I knew it wasn't a supply issue, because I pumped regularly and was producing plenty.

When Liam was 2 months old, he was still under his birth weight. He was nursing really well, but not gaining any weight. He had his first appointment at the Down Syndrome Clinic, and even thought he looked great, the doctor was concerned enough about his weight to hospitalize him.

We had our first encounter with the feeding team during our 3 day stay. They immediately told me that if the tests showed he was aspirating, I would have to quit breastfeeding. As soon as they walked out the door, I started to cry. I knew I would do what was best for my child, but after a lot of research, I felt like breastmilk was the best option. At that moment, Liam's wonderful pediatrician called. She reassured me that I should not give up on breastmilk, even if he was aspirating. She said the feeding team would insist that breastmilk could not be thickened properly in a bottle, but it was possible. I hung up the phone and breathed a sigh of relief.

After many tests, some of which were very invasive and involved him being put under general anesthesia, they were unable to find a cause for his low weight. With the exception of discovering mild reflux and Laryngomalacia (floppy vocal chords/airway), everything checked out perfectly. We were sent home with medication for the reflux and we were told to start supplementing with bottles of high calorie formula.

Liam had a very difficult time drinking from a bottle. It took him over an hour to drink 2 ounces. Within a week of leaving the hospital, Liam started Occupational Therapy. His therapist got him to drink properly from a bottle 5 minutes after she arrived! Liam continued to breastfeed the majority of the time, but we supplemented with 1-2 bottles of high calorie formula a day.

Our pediatrician monitored Liam's weight gain, and worked closely with his Occupational Therapist. He had been going for weekly weight checks since he was born, and continued with them. He finally reached his birth weight of 7 lbs 11 oz after he turned 2 months old. He started to gain, but it was very slow, and his weight often plateaued. The high calorie formula wasn't making much of a difference, and at 4 months old, he refused the bottle. He definitely preferred breastfeeding. It was so much easier for him!

At that age, he began watching other people eat and reaching for utensils. Our OT and pediatrician recommended starting solids at 5 months old. Armed with a list of high calorie foods, we started with one solid feeding a day, and stopped forcing the bottle on him. It was at that point that Liam finally began to gain! His pediatrician and OT always felt that Liam's slow gain was due to him burning off almost as many calories than he consumed. Breastfeeding became easy for him, but he had to work harder to take the bottle. When we made the switch to exclusively breastfeeding and giving him one solid meal a day, he gained an entire pound in a month. That was more gain than ever before!

At 6 months old, Liam returned to the Down Syndrome Clinic. He finally reached 10 lbs. The pediatrician and OT were thrilled with his weight gain, but his stats still weren't even on the growth chart. Liam's doctor at the Down Syndrome Clinic recommended a visit with the feeding team again. We loved his doctor at the clinic so much. He was very thorough and cautious, because he didn't want to miss anything. That being said, we were not looking forward to meeting with the feeding team!

Prior to the appointment, Liam's OT told us everything the feeding team was going to say. She worked on the team prior to switching to in-home therapy. She explained that they were very anti-breastfeeding, and would insist that we switch to formula feeding.

The appointment was worse than we ever imagined. A pediatrician, speech therapist, occupational therapist, and nutritionist were in the room with us. They spent the entire hour talking over each other and talking over us. They didn't even look at Liam as an individual. They treated him like he had every possible characteristic of Down Syndrome. They watched me breastfeed him for 30 seconds, then told me that breastfeeding was not an effective feeding method for children with Down Syndrome. The nutritionist was the only one who tried to help us with our current feeding plan, but she was flat out told that it wasn't an appropriate solution. They told me to stop solids, stop breastfeeding, and just give him bottles of thickened formula until he was 1.

By that point, my head was pounding. I explained that he was not aspirating liquids, and I inquired about how we were supposed to just feed him bottles of thickened formula when HE WOULDN'T TAKE A BOTTLE. They replied that he was just going to have to learn. The speech therapist came over at that point, made the thickened bottle, and repeatedly tried to shove it in his mouth. Poor Liam was sputtering, gagging, and crying, and I couldn't help but wonder how this harsh method was better than the relaxing, easy way he breastfed.

My husband was furious and I could tell he was ready to flip out. I just nodded my consent, so we could leave as quickly as possible. As we walked down the hallway, he asked me if I was really going to take those fools seriously. I looked at him, smiled, and said, "Absolutely not. I'm not changing anything."

I didn't change a single thing. I was producing enough milk and Liam was breastfeeding effectively. Liam continued to breastfeed and eat one solid meal a day. He went to weekly weight checks and had weekly sessions with his OT. A nutritionist came to our house once a month to weigh him and make suggestions on what high calorie foods he should eat. All three medical professionals were pro-breastfeeding and they were Liam's biggest supporters. He gained a pound each month. I knew we were doing the right thing.

At 9 months old, his nutritionist said she was thrilled with the way he was eating and gaining. He was released from her care. At that point, his pediatrician said he didn't have to come in for weight checks anymore. After 9 months of weekly weight checks, we were so happy with his progress!

At his 1 year appointment, Liam's doctor at the Down Syndrome Clinic was very happy with his weight gain. Liam was finally on the chart. Very low on the chart, but finally following his own curve! He asked if the appointment with the feeding team helped, and I told him the truth: that following my gut, cutting out all the unnecessary intervention, and just letting him breastfeed was what helped. I knew he was doing it right and I knew fighting with him to take a bottle was doing more harm than good. Once we relaxed and just let him be, he started to gain.

Liam is 13 months old and he's still a tiny kid. At 15 1/2 pounds and 28 inches, he is approximately the size of an average 6 month old boy. Instead of fighting it, like we did for the first 6 months of his life, we all came to the realization that he's just small. It's how he's supposed to be. Developmentally, he is doing many of the same things a typical child his age does, but because of his lower muscle tone, he has to work a lot harder doing those things. He burns off more calories than a typical child does.

Liam still breastfeeds twice a day. He is an amazing eater. He self feeds every meal and drinks from a straw cup. I will let Liam wean from breastfeeding when he's ready. I know we only have a little bit of time left, and that thought makes me sad.

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This post is going live at perfect time. October is Down Syndrome Awareness Month. There are so many myths and misconceptions about Down Syndrome. Although there are many babies with Down Syndrome who do have feeding issues, there are those who can and do breastfeed effectively. Sadly, many medical professionals tend to push formula feeding, thinking it solves everything. My hope is that this post will help another mother who finds herself in a similar position.

It IS more difficult to breastfeed a child with Down Syndrome. They tend to be harder to wake at the beginning and their suck is a lot weaker, due to low muscle tone. With determination, support, and lots of practice, it is very possible to succeed. I know there are obstacles to overcome. When safety is an issue, such as aspiration, formula is absolutely the right choice.

No matter what feeding choice you make, with love and proper nutrition, your child will thrive.

We succeeded with the help of 3 medical professionals who believed in Liam and knew breastfeeding really was working for him.

Despite being told over and over again that a baby with Down Syndrome could not breastfeed effectively, we stuck with it. I am so glad I went with my gut instinct and I'm so proud that Liam is still going strong. Liam is perfectly healthy and he is THRIVING. Breastfeeding was the right choice.

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 Be sure to catch up with the rest of the Breastfeeding Diaries at the top of my navigation bar.






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7 Comments »

7 Responses to “The Breastfeeding Diaries: Stefanie from Lexi Loo, Lily, Liam, & Dylan Too”

  1. Beautiful story, and well done mama. Thank you for sharing!

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  2. I always love hearing your story!!! I love that you did what YOU wanted, not what the "specialists" told you to do. You know your baby better than anyone, and he's just perfect!!!! :) xoxo

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  3. Even though I knew the facts of this post as they were happening, it is pretty amazing to read in this form. You are one of the strongest women I know and Liam was given the biggest blessing having you as his mother! I am honored to be your friend!
    xoxox

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  4. Wow! This was an amazing and triumphant story for you and your son. Mom knows best!

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  5. Mothers always know best! Thanks for sharing.

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  6. Beautiful post! Good job momma for sticking to your intuition!!

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  7. loved this story. such a strong & dedicated momma.

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