Breastfeeding Through One Twin’s Congenital Heart Disease and Open Heart Surgery 1


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The decision to breastfeed my twins was automatic; it never occurred to me not to nurse them, and despite the fact that it was two babies, I never worried for a second that I would not have enough milk. I actually worried that I would have too much. I blamed my extreme oversupply and forceful let down (spraying, really) for the reflux-like symptoms and months of non-stop screaming that my first two singletons had endured (see https://www.llli.org/faq/oversupply.html for more information). That, combined with milk protein allergy issues (MPI), made our bundles of joys, bundles of screams. My first son was a failed breastfeeding relationship after 4 months due to the inability to control the MPI and to get the blood out of his stool. Nothing I did would stop the incessant crying. The moment we switched him to hypoallergenic formula, all his symptoms stopped and he was like a different baby. I powered through with my second son, a strict dairy and soy elimination diet controlling the MPI. Somehow I endured the 5 months of screaming that went on all day long. Once past the first few months, we had a beautiful breastfeeding relationship, and I nursed him until he was 20 months old and I was 12 weeks pregnant with the twins.

I could not imagine dealing with two babies who cried nonstop and feared I would lose my mind, but I was still determined to make something work. Nursing was something that was very important to me, and since there was a very good chance due to our placental share issues that the girls would be early, I wanted to give them the healthiest start I could. I attended a LLL meeting specifically for multiples to discuss my concerns and see some tandem nursing in action, and I looked at photos of moms tandem nursing to get an idea of how it all worked. Right from the onset, I adopted a flexible mindset. I intended to do some bottling of breast milk, along with nursing to keep them flexible and to give their systems time to adjust some to my high flow. Within a few months, my goal was to have them fully on the breast. Little did I know how important these decisions and this attitude would be for our situation, and how beneficial my overabundance would be.

My mo/di twins, Kaylee and Madelyn, were born 5 weeks early. After dealing with placental share issues from week 19 onward, we were thrilled to have made it to 35 weeks. Madelyn was taken immediately to the NICU and I would not get to nurse her for hours. Although small at 4 lb 10 oz, she would only require a 2 day NICU stay for respiratory distress, and her older twin spent no time in the NICU at all. After all the stress of the pregnancy, we had made it through the worst of it and could finally breath a sigh of relief, and enjoy our journey raising identical girls. It was a false sense of security.

The girls had a slow start at nursing. Since they were premature, they both had latch issues, although Kaylee tended to latch better and for longer durations. I was told that once they hit their due date, nursing would come more naturally to them and their latch issues would resolve. I began to pump immediately, impressing the nurses with the amount of colostrum that I produced. I followed the advice of the lactation consultant and rented a hospital grade pump to maximize production. Once home, we worked on nursing slowly. Primarily doing bottles of pumped breast milk during the day, and working on latch, positioning, and tandem nursing in the evening hours when my two boys were asleep and I had more quiet time. I was still terrified of colic like symptoms related to over abundance occurring, but so far, the girls were happy babies.

Then the unthinkable happened. At 3 weeks old, we were finally adjusting some to having twins around the house. I had just taken a late morning nap on the couch with the girls, when my husband called me into the kitchen to see what he and my then 4- and 2- year old sons were laughing about. I laid the babies on the couch and left the room for a few minutes. When I came back, Madelyn was a blue/gray color and completely limp. She was not breathing at all. My husband called 911 and performed CPR on the kitchen table in front of my boys, who were waiting for their snack. She was taken by ambulance in critical condition to the NICU. I rode with the ambulance, and the first thing I heard upon arrival, as the NICU team descended on her to check her vitals was, “A heart murmur! She has a heart murmur.” Then someone turned to me, “Did you know your daughter has a heart murmur?!”.

My first thought was that they were totally wrong. She had been seen by her pediatrician a few days prior and had had an at home nurses visit. No murmur had been detected at either appointment. My second thought was wondering what the big deal was. After all, lots of people have heart murmurs. As it turns out, it was a big deal, and loud enough that my four year old son could easily describe the lub-woosh-dub sound of her heart. The heart issues were not at all related to her breathing emergency, but it was the first time she would be diagnosed with congenital heart disease.

They immediately sent the cardiologist to run an echocardiogram, and she was diagnosed as having a VSD and an ASD – two holes in her heart, with the VSD (lower chamber hole) being moderate/large in size. Interestingly, heart murmurs often cannot be heard until babies are a couple weeks old, so it had been undetected until that point. We were told then that the hole in her bottom chamber was large enough that it would not close on its own and that she would have to have open heart surgery around 6 months of age. The kindly cardiologist, who I would get to know well, told us not to dwell on the heart issues, to get through her current crisis, and to come see him when we were discharged.

The first thing I did after she was stabilized in the NICU was ask for a pump. I continued to store up the breast milk for both girls during her stay. While in the NICU, I also worked with a lactation consultant on positioning and feeding. She recommended the use of a nipple shield, which was a huge help in getting both girls to latch. For the first time, Madelyn completed a full feed on the breast. The nipple shield would greatly improve her nursing situation, but for just a short time before her heart issues would kick in and make feeding more difficult. Madelyn was treated for viral meningitis and pneumonia, and would stay in the NICU for 5 days, coming home on Thanksgiving Day.

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By one and a half months old, Madelyn began to exhibit symptoms of heart failure, including increased rapid breathing, fatigue during feeding sessions, and failure to thrive. All of her excess energy was going towards pumping the additional blood that was following into her lungs, and not towards growth and development. A minor bout of RSV at Christmas time exacerbated the situation, and at the start of the New Year, she was admitted to Children’s Hospital’s Heart and Kidney Unit to get her back on track. Once there, they immediately placed an nasogastric (NG) feeding tube, and we began to fortify her breast milk with formula to make it higher in caloric content. She came home a week later still on the feeding tube, and would remain on it until surgery a month later.

After that, feedings took forever. She was on a strict 3-hour feeding schedule, which to someone who had always fed on demand, was a very alien concept. At each feed, Madelyn was offered a bottle of fortified breast milk for 20 minutes. Whatever she did not consume of her milk ration was placed through her feeding tube. Oftentimes, she would take as little as 10-20 ml (30 ml equaling 1 ounce), and the NG feed would run for an hour after her bottle attempt. Her best was around 40-50 ml, which she would do once or twice a day. By comparison, her sister would take 3-4 oz easy every feed. Between, the milk prep, machine prep, checking for placement of her tube, and then the bottling and tube feed, there would often be only an hour or an hour and a half before the feed cycle started again. In addition, I fed my other daughter on demand, mostly by bottles, but on the breast too so that she would continue to learn how to nurse efficiently.

With Madelyn’s heart issues and an increased risk of getting infections, I was more determined than ever to continue giving her breast milk. I pumped every 3 to 4 hours religiously, massaging my breast while pumping to maximize production. I pumped everywhere and all the time – in bathrooms, doctors’ offices, the parking lot at Chuck-E-Cheese, and even in the waiting room during her open heart surgery. I worried that Madelyn would forget how to nurse, so I did practice nursing sessions periodically throughout the day, allowing her to latch and feed for a few minutes. Every night, as a part of our evening routine, I would tandem nurse her and her sister together before bed. It became our comforting ritual, and was something the girls eagerly anticipated before falling asleep together on the large twin nursing pillow.

With the feeding tube in place and the fortified breast milk, Madelyn started to slowly gain weight again. Then the vomiting started. There was nothing more frustrating then watching her take her large feeds of breast milk, only to projectile vomit it all back up again a few minutes later. Finally, the doctors decided that it was best to go ahead with the surgery. Her surgery was moved up, and scheduled for February 13th. By Valentines Day, my little 3.5 month old baby would have a repaired heart.

The day of her open heart surgery was one of the most nerve wrecking of my life, but she did great. Three days post surgery, they removed her breathing tube and she began to take bottled and tubed breast milk again. Within a few days, we were moved out of the Cardiac ICU and back to our old room in the Heart and Kidney Unit. The staff was fantastic about supporting my use of breast milk.

As I had during her previous hospital stay, I continued my strict pumping schedule and sent milk home for her twin sister at regular intervals. I brought along my own rental hospital grade breast pump to stay with me in the room. This was very helpful because the ICU only had a pump station, and I did not like to be out of the room if I did not have to be. Additionally, the Heart and Kidney Unit only had one pump that was shared among the other moms on the floor. The nurses were always popping into the room looking for the pump. Having my own pump in Madelyn’s room allowed me the freedom to pump whenever I wanted, without having to have someone track it down at each session. I used the microwavable sterilizer bags after each pump to keep the pump pieces clean. I also continued my practice nursing sessions, particularly our evening feed.

jenztandemfeedMadelyn was to be discharged when she began meeting her hydration goals on her own. This took a little longer than expected. Eventually, they pulled her tube to see if it would kick start her feedings, but it still was slow going. Finally, I requested a consult with ENT. I had noticed that myself and none of the nurses were able to pass her feeding tube down her left nostril, and my at-home nurse thought she might have a blockage. She was also always congested and this made it harder to feed. It was found that she had a narrow nasal passage on one side, and was very swollen. They put her on steroids, and immediately her feeds increased.

Two weeks post surgery, and on the girl’s 4 month birthday, Madelyn came home. We were told to hold on to her NG pump for a couple of weeks just in case, and the pump and pole stood in the corner of the nursery and collected dust. It was a joyous day when the medical company finally came to pick it up. I was able to stop fortifying her bottles 6 weeks post surgery. I then began to move both girls exclusively back to the breast. It was slow going and took a couple of months, but I considered each latch – even if it was only for a few minutes, a success. Eventually, the number of bottle feeds declined, then stopped altogether. Next was getting rid of the nipple shield. I tried for a couple of minutes each feed to get the girls to take the breast without the nipple shield, placing them back on when they needed them. Finally, both girls got used to latching without them and stopped using their nipple shields, Kaylee first and then Madelyn.

Despite ceasing bottling, I hung on to the hospital grade rental; it had become a security blanket of sorts to me. For awhile, I continued to pump regularly, then I dropped down to a morning and evening pump only, and then just an evening pump. Finally, I returned the pump and dropped all of my pumps. Now, my own personal pump is sufficient for times when I need it, and I have a huge stash of breask milk saved up.

Despite all the medical issues, multitudes of doctor appointments and hospital stays where I was away from my oldest twin, both girls have had nothing but breast milk (with the exception of Madelyn’s fortified bottles). The twins are now 9 months old and have been exclusively on the breast without bottles for a couple of months. Both have become very finicky and have refused the bottle altogether the few times I have left them for long stretches with my husband. Given the amount of bottles they took early in their lives and everything we went through, I find this rather amusing. I plan to continue nursing them until their first birthday and beyond. I could not be prouder of both of them and what we accomplished together.

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