Adam
 Pregnancy is an exciting time. All the plans and preparations that you make. Then, they all come tumbling down when you find out that you have a baby with a heart defect. Whether a minor or life-threatening one, no one can know the anguish and anxiety that you are going through, unless they have been there themselves. Everything seems to be beyond your control anymore. All the tests, needles, and drugs can be overwhelming for anyone. It can make you just want to take your baby away from it all and run away. But you know that you can't, and wouldnt. If only there were some way to make it all better. We know that we have to trust the medical professionals, and pray to our god that everything will be all right.
There are things that we can do as parents to still have some measure of sanity with those precious moments that we have with our tiny, helpless infants. Don't forget the plans that you did make. Disposable or cloth? Breast or bottle? Christening, blessing, circumcision? You are still the parent. When I was pregnant with my son I had decided to breastfeed him. I was in my last month of nursing school and from everything I had learned and seen in clinicals, breastfeeding was the best way to provide nutrition to a baby. I was pretty sure that I wanted to. I had tried breastfeeding with my daughter some years ago, but with little knowledge, and many mistakes, I gave up after a few weeks. I wanted to try again, and get it right. So, I read as much information that I could find on the subject and set out to succeed. Well, right from the beginning all the odds seemed to be against me. My labor was difficult, and the baby was in distress. I wasn't allowed to hold him after he was born because he was whisked away
to the neonatal intensive care unit (NICU). All the books said that I was supposed to start breast-feeding immediately after delivery!
Hours after he was born they let me go see him in the NICU. There he was, lying in a warmer with a respirator tube in his mouth, and intravenous tubes coming out of his umbilical cord. It broke my heart to see him like that. I wanted so much to hold him and give him the only thing that I could to comfort him, my milk. But of course that was impossible. I was so afraid for him. And, I was so afraid that he would die before I would be allowed to hold him. I wanted so much for things to be different. I couldn't understand why this was happening to my baby, and to me.
Within another hour or so, they transferred him to another hospital that was better equipped to handle infants with life-threatening congenital heart defects. The rest of the day was a blur. I insisted on being discharged from the hospital so that I could be with him. When we got to the other hospital, I gowned and scrubbed up to go see him. After a while they took him to do a cardiac catheterization. When the doctor reviewed the results with me, the picture looked grim. He had a single ventricle, the great vessels were backwards (transposition), and he had pulmonary stenosis. They had made a hole in the wall between the atria and would give him medications that would help keep the patent ductus arteriosus open. They would do surgery tomorrow that would put a Blalock-Taussig shunt in, and hopefully, he would be all right until he got bigger and they could do open heart surgery. I was so overwhelmed, I forgot to ask half of the questions that I had.
When I left the hospital that night I cried so much. I had horrible contractions and I was distraught over what was happening with my baby. How could we ever have a normal life? How was I ever going to bond with him? Bonding seems to become such a pressing concern for a child with a congenital heart defect. How do you bond with a child that has all those tubes coming in and out of him? Will I hurt him if I touch him? Can I pick him up? Does he know who I am? That night I resolved that I wasnt going to give up the idea of breastfeeding. Somehow I was going to accomplish what seemed impossible. Nothing in the books that I had talked about breastfeeding a child who was hooked up to tubes in his mouth, umbilical cord, arms and legs. Even my nursing books didnt address the problem before me. From what I could remember from my clinicals in NICU, a nurse had told me that babies with heart and respiratory problems couldn't breastfeed because it was too hard for the baby. It required too much energy, and made thei
r oxygen saturation levels drop. I didn't know if she was right, but how could nature be wrong?
After the third day my milk began to come in. Even though I had no baby suckling on my breast to produce milk, my hormones had kicked in. If I had done nothing, or wore a tight bra my milk would have dried up in a couple of days. Breastfeeding does not require any preparation. The nipples do not need to be toughened. So women who had not originally planned to breastfeed can still do so, even after the milk has dried up. It just takes more work re-establishing a milk supply. The best thing to do to prepare is invest in some good nursing bras. The extra support helps take the strain off your back and makes nursing simpler. With no baby nursing I became engorged. My breasts were so sore and full. I looked like I had two cantaloupes on my chest. Despite padding my bra, I leaked horribly. I had a small hand pump that I tried using at home, but I was so engorged that the suction cup couldn't fit. I let the shower run over me and I tried hand expressing my milk. What a relief! I got out enough milk to be able to
feel and look somewhat normal.
I went to the hospital and took my hand pump with me. When I got there I stopped in the bathroom and tried expressing my milk. At first the milk wouldnt come. I felt to strange sitting on a toilet in a public restroom trying to think of feeding my baby, while women came and went. After a few minutes I had gotten some milk out, so I stopped and went to see my son.
Well, needless to say, after a couple of hours I had two, very large wet circles on my chest. Of course I hadn't brought any extra clothes with me, so I asked one of the nurses if I could have another hospital gown. When she brought me the gown she asked me if I planned on breastfeeding. I couldn't believe she was asking. No one had said anything about it the past couple of days. Where, I know in the regular nursery, all the nurses encourage the mothers to breastfeed. When I told her yes, she showed me their breastfeeding rooms right there in the NICU! They were small rooms equipped with a rocking chair, a lamp and an electric breastfeeding pump. She gave me my own hand pump and tubing that hooked up to the electric pump and showed me how to use it. She also gave me Playtex bottle liners, rubberbands, and labels. I could pour the expressed milk into the plastic bottle liner, twist the top and secure it with a rubberband. The hospital required double bagging. This meant filling and securely closing one bag
, usually with 2-4 ounces of milk, then putting this bag into another and closing the bag in the same way. This helped to prevent any major leaks. Then the bag was labeled with name and date, and put into a freezer in the NICU.
I was free to use the breastfeeding room whenever I liked. I could store a fair supply of milk at the hospital, and store the rest at home. They also gave me an insulated diaper bag that I could use to transport the milk in. It was important not to let fresh milk set out for more than a half-hour or so. What I would usually do was put any expressed milk in their freezer, then when I was ready to go home I would take a couple of frozen bags home with me. Where we lived it was already 100 degrees outside, and it usually took me half an hour to get home. I would pack the diaper bag with bags of ice to help keep the milk frozen. Once unfrozen the milk had to be used immediately. Fresh milk can be kept in the refrigerator if it is going to be used within 2-4 days. It is normal for the milk to separate when it is frozen or refrigerated.
Even though my son wasn't yet allowed to have anything by mouth, he had a pretty good supply of milk waiting for him. The biggest challenge at that point was taking, or making the time to express milk. A normal breast fed infant will nurse anywhere from 10 to 20 minutes on each side every 2 to 3 hours, nighttime included. I got used to sleeping 4 to 6 hours at a stretch before my breast would become uncomfortable and I would have to express milk. I knew though, that when I was able to bring my son home he would wake up a lot more frequently than I currently was. The most important thing though at this point was to regularly express milk, around the clock, and for at least 10 to 15 minutes on each side. Besides keeping your milk up, it provides more nutrient rich milk for your infant.
The first type of milk that your body produces looks, and is, different. It is yellowish and thicker. This is called colostrum. It is also called liquid gold because of how rich it is with nutrients. Your milk will gradually turn that creamy color that we are all used to. It is important to nurse and express milk for more than five minutes on each side. This is because in the first five minutes the milk that comes out of the breast is designed to quench thirst. It contains less fat and is less filling. The milk that promotes weight gain, which is so important for any infant, isn't released until after the infant has nursed for at least 5 minutes. If a baby nurses frequently (every hour or so) for short periods, it is usually because they are not nursing long enough to get the more filling milk. If they begin nursing for at least 10 to 15 minutes on each breast, they are able to go for longer periods in between feedings.
After about 5 days, my son was able to start nursing with breast milk in a bottle. He was finally breathing on his own, and seemed stronger. Though I was afraid that he would become too used to a bottle nipple and refuse my breast, I was happy that he was able to take the breast milk. He tolerated the feedings well, taking 1-2 ounces at a time. That doesn't seem like much, but for someone who has had all of his nutrition by IV, it must have seemed like heaven to him to finally be able to taste something so sweet.
When my son was ready to be held--after the chest drainage tubes were out--I wanted to try breastfeeding. I was very worried that he would reject my breast. Not because it was harder for him to breastfeed, but it was something new, and he had become used to the bottle. Some babies readily accept the breast after the bottle, some require lots of encouragement, and some flat out refuse. It can be confusing at times for the hospitalized infant when one feeding is from a bottle, and the next from the breast. However, some infants have no problems going back and forth from breast and bottle. This can be a blessing for those of us who have to return to work, but are not ready to give up breastfeeding.
We got comfortable in the rocking chair, with my feet on a small stool, relaxing the muscles in my abdomen. I placed a pillow on my lap to raise him closer to my breast, and to take some of the weight off. Remember that you need to be able to relax, you may be in this position for 30 to 45 minutes. This is your time to relax and bond with your baby. When we were all positioned, I cupped my breast with my hand and expressed a few drops of milk. This will help with an infant who is learning to breastfeed after bottle-feeding. With bottle feeding there is instant gratification, but with breastfeeding it may take a little while for the milk to come down. When the milk is released some women feel a tingling sensation in their breasts. This let down reflex brings the milk down from the ducts where the milk is stored in the breast.
Next, I turned his body so that his little belly was next to mine. This makes it more comfortable for him, so hes not trying to turn his head to the side to nurse. With the nipple-- wet with the milk-- I stroked his lips from the top to bottom, until he opened his mouth wide. When he did, I moved him closer and let him latch on. At first he tried sucking like he did when he had a bottle, but with a little time and stroking with my finger on his jaw he began to nurse. The way a baby must nurse on the breast requires the baby to use their jaw and facial muscles. Remarkably enough, this seems to cause breastfed infants to have fewer problems with jaw and tooth development.
Once he actually started nursing and drinking milk, I quickly ran low on the store of milk that I had saved up. Now, I had to make it a point to either nurse him every two hours, or if I were at home, to express milk every two hours. The more you nurse, the more milk you make. It is a mistake to supplement with formula only because you feel are not making enough milk. This only slows down your milk supply. The less you actually nurse, the less milk you make. Keep track of your babys weight. If he is gaining weight, you are making enough milk. If he wants to nurse every hour, try to increase the length of time that the baby nurses for, remember the more filling milk is produced after 5 minutes of nursing. Make sure to drink enough fluids and breastfeed your baby, or express milk at least every 2 hours. Nature has developed a system that works. Even mothers of twins can produce enough milk to adequately feed two babies.
During his stay in the hospital, we had our challenging moments. There were times that he refused the breast and others where he refused the bottle. Unlike what that first nurse had told me, breastfeeding was not harder for him. His oxygen saturation rates actually went up when he breastfed.
Like most women, my nipples got sore. Don't use creams or oils. When washing, don't use soap on the nipples. This removes the naturally occurring oils produced by the Montgomery glands on the breast. The best remedy for this is air. At home I would take my bra off. When I was out I made sure to change my pads frequently. I also kept an extra bra and shirt in the car in case I got too wet. Leaking is inevitable the first couple of weeks, but after six weeks or so it rarely happens unless you have a let down reflex, usually caused by someone elses baby crying. Luckily, he was released from the hospital after 13 days. When we got home, he slept in a bassinet next to my bed. That was the simplest thing for me. He woke up every two to three hours wanting to nurse, and that way I only had to roll over and pick him up. No staggering to the kitchen in the middle of the night to heat up a bottle. Just snuggling together in bed, nice and cozy. Lying on your side with the baby next to you on the bed or a pillow is a
very relaxing way to nurse and preferred by many women. A legitimate excuse to stay in bed! It is important these first couple of weeks to get what rest you can.
Breastfeeding an infant with a congenital heart defect presents its own set of challenges. Some hospitals have lactation specialists available for consultation, depending on the size and location of the hospital. If there are no breasfeeding rooms available at your hospital, inquire about renting an electric pump. Though somewhat costly, well worth the expense. Think of the money you would spend on formula. It is even worth considering renting an electric pump for home, even if the hospital has one available. Look for one that cycles the suction, and that has variable degrees of suction.
Another resource is the LaLeche League. There is usually a chapter in metropolitan areas. Not all infants with congenital heart defects will be able to be breastfed, depending on their individual circumstances. However, if your baby becomes well enough to take a bottle, she could always take breastmilk in the bottle instead of formula. Any pediatrician will tell you that breastmilk is best for your baby. Wouldn't you want to give your baby the best, even if it meant some extra effort on your part?
My son and I enjoyed breastfeeding for 14 months even though I returned to work full time before he was a year old. It made what time we had together even more special. And with a child with a serious heart defect, thats all we can do: cherish each moment that we have.
Holly Montano, R.N.
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