And the milk goes on...

WARNING: What follows is, as my husband describes, a “graphic” description of Kaia’s and my breastfeeding journey. I did not shirk from including details that some may find very comprehensive and personal. I want other moms who are expecting special needs children to find an honest account of the challenges and joys of breastfeeding of a child with special needs. I searched for stories like this before Kaia was born and found few.

So, without further ado, our breastfeeding story:

I was never the girl who knew she wanted to have kids. I was never the woman who knew she wanted to be a stay at home mom. I actually, shamefully now, kind of looked down on women who did. But, there was one thing I always did know. I knew that if I ever did have kids that I would breastfeed. I had this image in my head of me nursing a baby in a rocking chair.

So, when we were told by the doctor that the ultrasound tech had detected that our unborn child had a cleft lip and palate, one of my first questions was, “will she be able to breastfeed?” The doctor said probably not. Then when we got the amniocentesis results back and found out that she had a rare chromosomal syndrome with a primary feature of low muscle tone, it seemed that there was no longer any question of her ability to breastfeed. For the doctors, anyway. Many of the kids with her syndrome needed feeding tubes, they told us. Kids that didn’t even have the complicating factor of a cleft lip and palate. They tried to see with ultrasound how far the cleft extended into her palate. We were told to expect a full cleft including the soft palate. One of the doctors had a child with a cleft and she took a special interest in our situation. She said our baby wouldn’t be able to breastfeed. So did the plastic surgeon. So did the geneticist and developmental pediatrician. I could pump breastmilk, they told me. But she won’t be able to breastfeed.

We made a decision to deliver at a facility that had a level 1 neonatal intensive care unit instead of the suburban hospital where our regular ob/gyn delivered babies, in case there were additional health problems we couldn’t foresee with ultrasound. The doctors at the high risk practice would continue our prenatal care and deliver our baby at the other facility.

Kaia was born via c-section one early Friday morning. The doctors, in the first of many predictions, had been wrong about how far her cleft extended. It barely extended into the hard palate, just affecting the alveolar ridge. Later that day Paul rolled me down the hall to the nicu for our first attempt at breastfeeding. Thankfully this facility with a level one nicu had lactation consultants on duty 7 days a week. Kristin was the first lactation consultant. She showed us how to tickle Kaia’s lips with the nipple to get her to open; how I could sit and hold her in a football hold – the most comfortable position after having a c-section. Because of Kaia’s cleft, she showed us how to use a nipple shield, which allowed Kaia to have the nipple extended further into her mouth. Kaia, the little trooper, latched on right away. She proved them all wrong. Those consultants were there with us for every feeding for several days. We had to prove to the doctors that she could get enough milk so before and after every feeding we weighed Kaia to see how much milk she drank. She had jaundice which made her very sleepy so we had to work very hard to keep her awake during feedings. We tickled her feet, combed her hair, anything to keep her awake. Because she was in the nicu, we used curtain screens around her little bassinet area in the nicu for privacy during feedings. There I was in a wheelchair, completely ensconced by supportive pillows, surrounded by Paul, the lactation consultant, and one or more RN’s. Often the doctors would peek his head over the screens to talk with us or the nurses. I didn’t care. My little girl was breastfeeding.

After a few days we introduced a haberman feeder; a special bottle designed for babies with clefts. Paul could feed her and the nurses could do night feedings in the nicu with it. Upon advice from the lactation consultants, I continued to pump following every feeding and every 2-3 hours when I was away from her. That advice was crucial to me developing an abundant milk supply. Kaia came home after a week in the nicu and I continued to pump after every feeding. Until she had the cleft lip surgery at 4 months of age, I continued to pump. After almost every feeding I would offer her the haberman bottle with expressed breastmilk to make sure she was getting enough milk. We could squeeze it to get her drinking again when she tired.

I liked the haberman at first. I wasn’t an experienced breastfeeder. That, combined with the use of the nipple shield and my abundant milk supply pretty much guaranteed that breastfeeding was a messy spectator sport. It just wasn’t something I was comfortable doing in public. So we used the haberman in public and Paul could help with feedings at night on the weekend and in the evenings.

I became an experienced pumper. That hospital pump was my constant companion. I pumped on airplanes, in airport gate areas, in bathrooms. But most of all, I just pumped. Often. I found a great product called a nursing cape. It was great for nursing and also for pumping. With it, I could pump in all the settings I mentioned and still retain my modesty.

I heard so many new moms complain about a low milk supply problem. I had the opposite situation: an overabundant milk supply. Now, if you have to have a milk supply problem, I was glad that mine was an overabundance. However, it was still complicating. I leaked. I leaked through countless nursing pads. I should’ve bought stock in a company that makes nursing pads, I went through so many of them. Even when Kaia would start sleeping longer at night, my breasts would wake me up at night, heavy, leaking and demanding a release. I also had to pump “off the top”, or pump off the foremilk, before breastfeeding Kaia. I had so much milk that the initial letdown was so powerful and there was so much of it that it would overwhelm Kaia. I would usually pump 2 oz off each side before feeding her. Since I routinely pumped 6-8 oz off each side she still had plenty of milk and she would receive more of the higher fat hindmilk.

There was one advantage to an abundant milk supply. The weight that I had gained while pregnant - the recommended 30 pounds - literally melted off during the first months after Kaia was born. I didn’t do a special diet or exercise program. It just came off. I figured out that I was expending 800 calories or more each day producing breastmilk.

When Kaia was a couple weeks old I went to a La Leche meeting. I thought that I was looking for support and encouragement. Really, I think I just wanted everyone to treat my breastfeeding experience the same. Everyone there focused on how Kaia was different: her cleft. I was already getting used to that and would continue to do so. However, I didn’t feel like it was a great help to go. I also had this underlying feeling of inadequacy as a breastfeeding mom because we were using the nipple shield. That artificial device felt, well, it felt so artificial. So unnatural. I didn’t feel like we were truly breastfeeding. I grew to hate the nipple shield. I had to wash it after each feeding and have it handy for the next feeding. I’d be upstairs ready to nurse Kaia, breast out, and realize the nipple shield was downstairs, freshly washed next to the sink. I lost one and we joked that we’ll find it when she’s 3. She 19 months old now and we still haven’t found it.

I didn’t return to La Leche until Kaia was 7 months old. When I did, I met the most inspiring woman there. Her name was Melissa and she too had a child with special needs. Her daughter had low muscle tone like Kaia, but required a g-tube. Melissa had kept pumping for months to supply her daughter with the best nutrition available – her breastmilk. I was so encouraged to see her there. I thought, if she is comfortable and is able to find encouragement here then so can I.

Eventually, after so many feedings with the haberman, Kaia started to get nipple confused. The week right before her surgery at four months of age she went on a nursing strike and refused to breastfeed. I was so worried that she wouldn’t remember how to breastfeed after the surgery. Of course, I continued to pump to maintain my milk supply and to provide expressed milk for her in the haberman bottle.

The plastic surgeon’s office gave us a syringe/tube contraption to use to feed Kaia after the surgery. We tried it a few times in the weeks before her surgery. It didn’t go so well. Babies have a suck/swallow reflex and there was nothing for her to suck on. We just squirted the milk in her mouth with the syringe tube and she didn’t know what to do with it. I anticipated there would be difficulty after the surgery but the nurse and doctor reassured us, saying we’d be surprised how quickly babies catch on to using it when there is no other food source.

Kaia had her surgery on a Monday morning. It was a very difficult day. She emerged looking swollen and was extremely lethargic. We brought her home the next day even though she hadn’t been drinking with the syringe well. She was so lethargic still. More on this to come in a later post; I want to stay on topic here. By Thursday she still was not drinking from the syringe. I was worried about her hydration and her ability to heal if she wasn’t getting nutrition. Her plastic surgeon finally relented and told me to breastfeed her – but to do so without the nipple shield. She couldn’t have anything that hard near her sutures. A breast by itself is soft enough so that it wouldn’t damage those delicate tissues. I was so nervous. She wouldn’t breastfeed the week before surgery with the nipple shield and had never breastfed without it. Would she recognize that this is where the milk comes from and latch on and drink? Gingerly I held her on our living room couch with Paul sitting across from me. He looked on encouragingly while I held her and showed her the nipple. I slowly and carefully brought her to the breast. Miraculously, she latched on and was so thirsty she didn’t stop nursing for 20 minutes. She came away looking extremely tired and content. When I lifted her she belched loudly. I was crying tears of joy. I was so thankful that I had made the commitment in the months prior to persevere; for all the pumping.

I was still concerned that Kaia wasn’t able to suck efficiently enough to get a sufficient quantity milk so I rented a hospital baby weigh scale, like the kind we had used before and after feedings in the nicu. For a month I weighed her before and after every feeding. There are few resources and research on how much breastmilk babies drink. I found one at: http://books.nap.edu/openbook.php?record_id=1577&page=82 It said babies her age drink 19-30 oz breastmilk per day. Surprisingly, breastfed babies do not increase by much the volume of breastmilk that they drink as they age. Rather, the composition of breastmilk changes as the baby ages. Kaia usually drank between 15-25 oz per day and continued to gain weight consistently on her growth curve. The first month after her surgery, Kaia breastfed exclusively. Breastfed au naturelle, no nipple shield! Hallelujah! The word bottle became a dirty word around our house. I was so thankful that Kaia was breastfeeding I was determined that she would not become nipple confused again. I was completely committed to breastfeeding at every feeding.

Since she was only 5 months old and I really wanted to maintain my milk supply, I continued to pump, usually 3-4 times a day after feedings. I wasn’t sure that Kaia had an effective enough suck to maintain my milk supply. I believed she was able to get the quantity of milk she was getting because I had such an abundant supply and powerful letdown response due to all the pumping. Everyone else told me otherwise. Why are you still pumping? La Leche, lactation consultants, her occupational therapist, even my husband all asked. If she is getting that much milk she should be able to maintain your milk supply. She will take what she needs. I started to doubt my instincts. When she was 7 months old I returned my rented hospital grade pump and pumped sporadically after feedings a couple times a day with a used store-bought pump. My milk supply dramatically decreased. My period resumed. I knew that if I wanted to continue breastfeeding Kaia I needed to keep pumping after feedings to adequately stimulate a good enough milk supply for it to be easy for her to get the milk. So I rented a hospital grade pump again and returned to a prior pumping schedule, 3 or 4 times a day after feedings.

With all that pumping, I accumulated quite a supply of breastmilk. We had actually purchased a deep freeze early on because our freezer just wasn’t big enough to contain all of it. I (half) joked with Paul that all that breastmilk was my life insurance policy. If something had ever happened to me, I knew that Kaia would continue to be able to get the best nutrition for quite some time. Eventually I realized that she would never need all that stored milk. I read about Indiana Mother’s Milk Bank and started the process to become a milk donor. It isn’t the easiest process and there is no benefit such as financial remuneration, but I wanted all that milk to be of use. Milk Banks screen donors, pasteurize donated breastmilk, and give it to NICU’s for preemies and to babies whose health is best served by drinking breastmilk. I think they were genuinely shocked (and very thankful) when I showed up with several large coolers full of breastmilk.

At just over six months, Kaia had started solids as well. I kept getting pressure to increase her solids and have her drink from a sippy or open cup. Until Kaia was 11 months old, we offered breastmilk in an open cup. We noticed her having a wet rattly breathing sound after she drank from an open cup. Upon the suggestion of her Occupational therapist, Kaia had a swallow study done. They couldn’t evaluate breastfeeding in a swallow study, but they found she was aspirating all consistencies; thin liquids, thickened liquids, purees, and solids. Again, more of this subject to come in another post in the interest of staying on topic. The speech therapist that did the study told us she should be admitted right away to insert a g-tube. Kaia’s pediatrician disagreed. Two other doctors that we saw over the next week agreed with him. She was gaining weight on her growth curve and had never had pneumonia. Both would be likely to have happened if she truly was aspirating. The pediatric GI doc encouraged me to continue breastfeeding her as long as I was willing. You’re doing something right, he said.

Something right, indeed. No ear infections, no major illnesses, no pneumonia. All common for kids with clefts and especially kids that are aspirating the way Kaia was supposedly aspirating. It makes me wonder how many kids have feeding tubes inserted that don’t really need them. I am not in any way questioning the parents of these children. I just knew that the right decision for our daughter wasn’t a feeding tube. We couldn’t believe that she needed one. We felt if it were true that she was aspirating she would’ve been sick. Not only had she been healthy, she was gaining weight. It didn’t make sense. We weren’t going to put a feeding tube in our daughter and invite all the negatives that go with that (oral aversions, risk of infection) when there was no sound reason to do so.

So I continued to breastfeed her. And I continue to do so. The challenges have changed but persist. Kaia has gone on several mini nursing strikes, usually when her routine is off. Travel days of vacations are usually tough, although many times she has nursed well on planes and fallen asleep doing so. Since about 7 months on, Kaia prefers to breastfeed in a darkened, quiet or noise machine-d environment. I usually feed her in the same rocking chair in her bedroom, whereas at first she would breastfeed anywhere. She went through a period of biting at around 9 months. I used the technique of saying “no bite” in a very firm voice and setting her on the floor for a short time. The biting ceased very quickly. Now she will play and lick at the nipple at the end of a feeding. She has almost all her teeth now; a baby beginning to bite does not equate an inevitable stop to nursing.

Over time, Kaia and I developed a rhythm of breastfeeding. I found holds, or breastfeeding positions, that were the most comfortable for both of us. Instinctually, I developed techniques to assist her feeding that I had never seen other breastfeeding moms do, at least in public. I would lean slightly forward over Kaia, so that gravity could assist with letdowns. I also used the method of compression during feeding to keep the milk flowing, and used hand expression, especially at the end of feedings, to completely drain the breasts without having Kaia needing to work so hard and tire with feeding.

We are slowly weaning. Kaia is nursing on average 3 times a day now. I still get pressure to wean more and quickly. She isn’t eating more solids because of the breastfeeding, people have said. She isn’t drinking more from a cup because of the breastfeeding, people have said. A select few people are vocally supportive of our continued breastfeeding. We finally found a cup that worked for Kaia (her wonderful OT recommended it). Kaia drinks well from it on the rare occasions when I am away from her and she misses a breastfeeding. She doesn’t the rest of the time, because she is getting enough milk from me. I don’t worry about it anymore. I know she can drink from a cup and the time for sole cup drinking will come soon enough.

I feel so fortunate to have been able to fulfill my dream of breastfeeding my little girl. I didn’t have many breastfeeding role models, and even the ones that I did have didn’t understand how breastfeeding a baby with special needs was different. I truly feel like if we could do it, almost any new mom can. I especially want new moms of children with special needs to know that it is not an absolute that their baby will not be able to breastfeed. It does take more commitment. It’s a commitment that has been so worth it for us. I share our experience here to give hope and a realistic view into how breastfeeding a child with special needs is possible.