When I was 20 weeks pregnant with my daughter, my 6th and final baby and my only girl, I learned that she had Down syndrome and congenital heart disease. I was told that babies with Down syndrome usually have some challenges with feeding. Her cardiologist also brought up what the plan would be should she not gain sufficient weight before her open-heart surgery. Even armed with this knowledge I was determined to breastfeed her, just like with my other children. Looking back at that time I would say that I was determined but mostly naive. I had no clue how challenging it would actually be for us.

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My daughter was born on the first day of September, two weeks prior to my due date. She came into the world fast, within 20 minutes of my birth team and I arrived at the hospital. I was only able to hold her a mere two minutes before the umbilical cord was cut and I had to hand her over to the baby nurse and NICU team. I was unable to latch her before she was taken from me, even though I had been told I could hold her for that first golden hour as long as she was stable. Her initial APGAR score was an 8. A few minutes later it was a 9. She was not in distress. Yet the NICU team brought her to the NICU and put her on IV fluids because of low blood sugar. This could have been avoided if I had been allowed to nurse her.

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Because she had come so fast I didn’t have time to get an epidural. This meant I was able to get up and about immediately and then able to join my daughter in the NICU 40 minutes after birth. My initial attempts to latch her were unsuccessful. She was very sleepy because of her heart condition as well as her low tone. I pumped out colostrum to feed her by the bottle. During her first feeding, I put her to my skin while I fed her and marveled at the sweet little life I was now in charge of caring for.

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When a baby is on IV fluids for low blood sugar their glucose levels are checked frequently. These numbers determine whether the IV fluids can be slowly weaned down. I stayed on top of the nurses and doctors to wean her off because I just wanted to go home with my baby where we could rest, recover, and get to know each other. Unfortunately, the amount of colostrum I was pumping just wasn’t enough to sustain my girl. I wanted the amount of IV fluids to lessen, so I asked for donor milk and was told it was reserved for preemies. I asked about spoon-feeding and about finger feeding or using an SNS system. I was denied all of the above. My only option was to give her formula by bottle. It was extremely frustrating to have limited options. To add on to that there was not a lactation counselor available because my daughter was born on a Sunday, the day before Labor Day. We also didn’t have access to an occupational or speech therapist. Basically no one who specialized in feeding special needs children was on our team.

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Our luck changed on Wednesday when my milk came in. We were also moved to a different area and given a couple of excellent, compassionate nurses as well as a new doctor to head up our team. She had been a lactation counselor and was a huge proponent for breastfeeding. She immediately got OT in there and came up with a new plan for us. She also arranged for us to have a private room because I had been discharged from the Mother/Baby unit. I was not secured a room there due to the hurricane that was heading our way. I am forever grateful for her and the impact she had on our nursing journey.

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The occupational therapist helped us work on her bottle skills, as well as a modified SNS system and finger feeding. Unfortunately, she developed jaundice and we had to stay a little longer so that she could be under the blue lamp. We also finally got to work with lactation, who helped me get a better latch with her using a nipple shield. Even though I had fed five other babies by breast I had never fed a baby with such high needs before and needed the extra guidance. Being in the NICU with her was one of the hardest experiences for me. I’ve always felt confident in my mothering skills as far as breastfeeding and caring for babies goes. Never have I questioned myself so much. They had put her on a 3-hour feeding schedule, which went against all my mothering instincts. I had always fed my babies on demand. I could not even

 

 feed her a bottle without asking for my own pumped milk to be brought to us, and they would not bring it if it “wasn’t time”. Multiple times I had to remind nurses to bring it. One time I was talked down to by a nurse who told me to wait until the baby woke up and showed hunger cues. Of course, as a mother of 6, I knew how to do this with typical babies, but Emmy was not a typical baby and slept a lot more than other babies. Another time a nurse brought us formula and said it was breastmilk. My husband had to argue with her that it was not. Most of the time spent in the NICU I felt like I had no control over the care of my daughter, no matter how hard my husband and I advocated for her. Thankfully, less than a week after she was born we got to go home. Coming home was both scary and exciting.

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Our at home feeding routine was very time consuming and I had little time or energy for anything else. Every 2 hours I would nurse Emmy and then I would pump. For the first week home, it seemed to go well. But, at two weeks old her heart failure symptoms started and she had more and more trouble with nursing. She was hardly ever awake enough to get a good latch and she didn’t have the energy to nurse for long before she fell asleep again. So, we had to change our routine and we started finger feeding because she still was not taking well to the bottle. Every two hours I would attempt latching her (because I didn’t want her to lose that skill). Then I would finger feed her, which still took a long time because she was so sleepy. After I was done feeding her I would pump. The whole routine would take about an hour. Then I’d have an hour to feed myself or shower or sleep before I had to start the whole routine again. At night I could stretch it to every 3 hours. We also had weekly appointments with occupational therapy that gave me homework to work on feeding skills. It was exhausting.

Emmy was born at 8 pounds 1 ounce. When we left the hospital she was about 6 1/2 pounds. Being home meant frequent weight checks. We knew that surgery was impending and that she needed to gain weight for surgery. We went to the pediatrician multiple times a week to check her weight gain. I was disheartened to see that the number was not going up. Her cardiologist suggested that we start fortifying my breastmilk with formula. Even with this added measure, she did not gain weight. By the time she was a month and a half old, she was still under her birth weight. Our pediatrician sent us to the hospital so that she could be admitted.

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Once at the hospital the doctors had an NG tube placed so that Emmy could get feeds in a way that didn’t cause her to expend too much energy. The first time she received a feed through her NG tube I just sat next to her and cried tears of relief. The past month and a half I had spent killing myself trying to get enough calories into her and feeling like I was just spinning my wheels. Doing everything in my power according to what the doctors suggested and still seeing my baby struggle broke my heart. I had felt the weight of the world on my shoulders and it felt like it was lifting if even just a little bit.

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The doctors made a plan to schedule surgery for a g tube to be placed. On the morning of her surgery I held her skin to skin in the pre-op area and tried to calm my frazzled nerves. When we were being checked in the nurse had used the term Failure to Thrive. It felt like a knife to my heart. I had failed her. All of my hard work had not been enough and now she needed surgery. That was a hard pill to swallow. I now know that it wasn’t my fault. But, at that moment I couldn’t be convinced otherwise.

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Her recovery from g tube surgery went very well and she started gaining weight slowly. A few days after we got home from the hospital Emmy had a cardiology appointment where we were informed that her open heart surgery had been scheduled for the following week. We scrambled to prepare for the hospital stay. That week Emmy got sick. The day before her surgery I brought her into the pediatrician because her oxygen levels were low. She tested positive for RSV and was admitted to the PCICU for respiratory support. Surgery was postponed for 6 weeks.

 

 When Emmy was doing better with her breathing and didn’t need such a high level of respiratory support she was moved to the children’s floor of the hospital. She had a couple of desats that set off alarms, one which occurred after a nursing session. This concerned the doctors and they decided to put her on NPO orders until heart surgery, which meant that I couldn’t nurse her. I was very frustrated at the thought of all the progress we could lose in those 6 weeks plus the time it took her to recover from heart surgery. I asked to see the speech or occupational therapy before we were discharged. We came up with a plan to work on her oral skills so that she would not develop an oral aversion. Those weeks leading up to surgery I was very sad and anxious and grew resentment towards my pump, but I kept trucking along, pumping every 2-3 hours.

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On December 13th Emmy went in for open-heart surgery to repair an atrioventricular septal defect in her heart. The surgery went very well and so did her recovery. I wasn’t able to hold her in my arms until three days after her surgery. Those were a very long 3 days! Once I could hold her again I worked with occupational therapy and lactation to get her to latch again before we were discharged. We enjoyed a quiet Christmas at home trying new nipple shields and getting to know our sweet girl better. Now that her heart wasn’t working so hard she was awake more and we got to see her personality shine through. January was a quiet month and the first month we did not have a hospital stay. We spent a lot of time skin to skin and offering the breast. Slowly she started spending more time at the breast, even though the left was her favorite and the right just made her fussy.

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In February she got sick and ended up in the hospital for another short stay. Then March came and we entered into an unprecedented time of a global pandemic. This meant a lot of time at home and having to forego occupational therapy. Unfortunately, that also pushed back physical therapy as well, even though it had already been delayed by sternal precautions. I continued to do what I knew to do and offered the breast as much as possible.

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When she was 7 months old we were able to introduce solids with the help of OT. We continued to offer once a day, just a few bites. This is also around the time when she decided that she liked nursing on the right side as well as the left. Now she is eating solids 3 times a day and nursing on demand as well as being fed through the g tube. I’m still pumping 4-6 times a day. We are slowly working on a plan with her nutritionist to wean her off g tube. She recently passed her swallow study. The next step is getting her to drink from a cup.

It’s been a long, hard journey, but worth it all to be her mom. I learned that even though our journey looked different I was still achieving my goal of breastfeeding my girl.

 

This experience has changed me for the better and helped me to see how strong I actually am. But, I could not have gone this journey alone. A couple of years before Emmy I had Elon, who also had feeding issues, although nowhere near as hard as Emmy. While nursing him I joined our local La Leche League and made wonderful friends who later helped me in my journey with Emmy. I had encouragement and advice from an incredible mama who had exclusively pumped for her baby for over a year and from another incredible mom whose baby had also been g tube fed. There were also wonderful leaders who were always there to lend a listening ear, helpful resources, and practical help. I had my doula, Angela by my side through everything. She is also a breastfeeding counselor with much knowledge that she shared with me. I had support from my husband and family and countless friends who believed in me. There were the fellow moms of children with Down Syndrome, who are in my opinion just the best people on the planet. And I can’t forget the multiple therapists, lactation consultants, nurses, and doctors who believed in my mothering abilities and encouraged me every step of the way. I am forever grateful for all the support of my family and I received.