I knew this would be different. I had read multiple resources that spoke about the difficulties that babies with Down syndrome could have with breastfeeding. I tried to assure myself that I would be one of the few that had no problems and would hardly notice a difference, but deep down I knew this would be a struggle. I read resource after resource to prepare myself and to collect tips on what to do. I had Dr. Norton put me into contact with the Lactation Consultants at the hospital and spoke with them on the phone about being ready to help me out. We put a plan in place that I would meet up with them once Johnny was born to make sure everything was going well. They felt that I had the right experience to make this work. Dr. Norton was also reassuring, reminding me that if there were issues, then I had what I needed to make sure he got breast milk while we figured it all out. Johnny latched on right away after birth, I thought to myself, "Yes! My fears were unfounded! This is going to work!" After all, he may have been my smallest baby, but unlike his sisters who had the teeniest little mouths, he had a normal sized mouth which made his latch surprisingly comfortable! That first nursing session was good considering. He stayed on for a good 10 minutes and drifted off to sleep. I didn't blame him, he had just done the most vigorous and strenuous thing his body (still to this day) has ever done! Throughout the rest of the night we continued to wake and nurse as much as we could. He was still acting sleepy, but I was used to that, both the girls were pretty sleepy until our first full day home...then they ate for the next three days straight to make up for it!!! Later on the day after he was born though I was noticing that while he latched on great, he had lots of support, he wouldn't get a consistent suck. Without this consistent suck I knew he would have trouble drawing out the amount of milk he needed. I also knew that without that, I would have difficulties getting the signals I needed to produce more milk for him. So I called in the troops and had both lactation consultants storming in breast pump and nipple shields in hand! This was a good thing for me. I needed to go ahead and drain out some of my milk and the nipple shield helped a lot in getting his tired little mouth in an even better position. They were really helpful and assured me that we would get the hang of this as we continued on.
Once we brought him home we started the process of nursing, pumping, bottle feeding because we thought it was his energy levels that were keeping him from waking up enough for that strong consistent suck. I was blessed to fall immediately back into the swing of things with pumping and only had to give him an initial ounce or so of formula in the hospital. Our issues were a little bit added onto with having to take him up for the next two days to have his bilirubin levels rechecked. This meant that both Saturday and Sunday morning we spent 3 hours up at the hospital to wait on the results. Monday morning we went into the pediatrician for his initial newborn check up. They rechecked his bili levels there and waited for the phone call to tell us he was all clear. I answered the phone and our pediatrician informed us that Johnny would have to be readmitted to the hospital for phototherapy and monitoring.
I knew that the most important things I could do for Johnny was to be there for him and to feed, feed, feed him. Because of how quickly they needed to get his bili levels down, he needed to spend at least the first 6 hours uninterrupted under the lights, that meant even his feedings would take place under the lights...so no nursing...but I could give him pumped milk if I could pump enough. So the task at hand was to pump. So pump I did. I pumped and pumped and pumped. I had plenty of milk for him and was glad that my body was doing it's part. By that evening when I finally got to hold him again I had to make a decision. I could either spend a majority of the 20 minutes they would let him out from the lights by fighting with him, trying to get him to nurse, listening to him cry and scream as I tried to get him to latch on. Or I could take that time to spend snuggling him, having skin to skin time, and enjoying bonding with my son. The choice was easy. My body was still ahead of him in milk production to consumption so I took every chance I could to snuggle and continued feeding him pumped milk in a bottle. Once we were discharged, they wanted me to continue pumping and feeding until we rechecked with my pedi two days later.
When that visit came we were frustrated to learn that Johnny was not gaining weight very well and his levels were not as low as they would have liked. So we were encouraged to continue pumping and bottle feeding to make sure he stayed on top of his health. He eventually made it back up to his birth weight at three weeks old and we were given the green light to work our way back into nursing him. I knew it would be challenging to get him back into nursing, the bottle is a lot easier for babies to take. So we started slow. We let him nurse for as long as he wanted, then pumping, then bottle feeding. A few days in, I started breaking down a little bit as the whole process was taking anywhere from an hour to an hour and a half. I couldn't do this for every feed. It wasn't fair to him, it wasn't fair to the girls, and it wasn't fair to myself. So I began to back off the nursing attempts for some feedings and just going straight to pumping and bottle feeding for them. We were doing this for about half his feedings and still trying to nurse for the other half, until the ECI assessors came in.
When ECI came to checkout Johnny, we were disappointed, but felt validated for them to confirm what we thought. With Johnny's sucking pattern and low muscle tone in his mouth, when nursing he was probably burning more calories than he was consuming. We were advised to slow the nursing down to three sessions for about 10 minutes a day to build up that strength and hopefully, Johnny will catch on soon. Honestly, looking back, I am so glad they told us this because it gave me an "out" to back off a bit. I needed the "excuse" to cut out most of the long sessions so we could get on with things again. An hour and a half every three hours does not leave you much time for anything else! So that is where we stand today, nursing a few times a day with all of his feedings being bottle fed breast milk. The people from ECI helped us remember that when we talk about babies with T21 having low muscle tone, it isn't just the muscles in their arms and legs. It is their jaw, cheek, and tongue muscles too. Additionally, their tongues tend to have a "thrust" which pushes the nipple (bottle or, ahem, otherwise) out as they are feeding. Also, that low muscle tone is also translated to his gastrointestinal muscles which means he can sometimes get ahead of himself in eating which doesn't usually work out well for the feeder... These things can sometimes be worked on with therapy, so we are working on getting that lined up...more on that when it starts to come to fruition.
How I feel about this depends a lot on the day. There are plenty of days that I am frustrated by it. It is such a pain to have to calculate out your day on being back by a certain time to pump, or to have to remember to take your pump, or at the very least to remember an extra bottle of milk (and know about keeping it cool, or how to heat it, or when it needs to be used by). I want to be able to be out with the girls and be able to feed Johnny like the second nature it is, to have him close when he needs that extra bit of Mommy time. It is messy to pump too! I have told people that I have never been so constantly covered in fluids in my life. Either my pump parts are leaking all over me in the pumping process, or I let the bottles overflow, or milk spills when combining bottles or when cleaning, or he leaks milk out of the side of his mouth, or spits it all up, forcefully, when he gets ahead of himself. It is hard to know that my body has this down to a science and has everything he needs to eat, but can't get it to him the easy way. It is difficult when he starts fussing to have to get up to pump and to hear him cry for that time. It is so hard to want those sweet early morning feedings, snuggled up in bed, lying side by side, drifting in and out of sleep together, and not having it, for it to feel so medical. Sometimes it is hard because of the expectations I put on myself and the way I project it as an analogy for his life. That because the problems are totally T21 related, I feel like it is our first T21 challenge, that I am being tested, and how I perform on this challenge will set the tone for the rest of his life. I place all that burden on this, as if I give up now, then it means I won't fight for him later. My mind tells me that if I stop trying to nurse or stop pumping or have to "give in" and give him formula then I will just roll over the next time we face adversity. It is all mental, I recognize that, but it's on my mind a lot.
Of course, there is a lot of good too. It's nice to be able to leave Matt with the kids to help my mom or to "go out" (usually means an errand, but might soon mean some Margaritas with friends) and not worry about him feeding. It does feel odd to not have your shadow when he is so young though! I successfully breastfed the girls until they were a year so I know how to breastfeed. I am so thankful for that experience, if I had these troubles with my first (and maybe with the second) I would be putting out a call for formula coupons from my family and friends. The problems I had initially nursing Mac are nothing compared to the all out exhaustion I have some days that I am working really hard at him re latching and then pumping on top of it all. With the third, I just feel like it's part of it all and we will make it work. Also, I successfully pumped at work for 6 months with MacKenzie and another 6 months with Keegan (plus daily pumping for additional months). I am a pumping machine, a milk cow, and possess such a plethora of milk that I could literally provide twins with enough to eat. I have a ton of milk already stocked in my freezer, I am guessing at least 600 ounces. A friend says I am obsessed with pumping and I will recognize that there is a certain level of anxiety that I possess. I am worried about what happens if my supply drops off if I can't get him to re latch, I might "need" that stockpile. It actually causes a deep set worry in my chest to think about that milk running out before it's time or not being able to add to it. I am also a bit sad because I want to donate again, but don't feel like I can make that commitment quite yet.
Is it strange that I text friends pictures of my milk?
Then don't say I am obsessed with pumping!!!
I know I have more than enough for Johnny now and that is what I am trying to focus on. In my morning session I get enough for three feedings (usually around 16 ounces). Which is helpful if we want to get out and do something and for stocking up that freezer supply. For the rest of his feedings, I usually get enough for that feeding, with an occasional jump in supply that provides more. I am diligent about (when we are here) pumping every three hours for now and only let myself go longer when we are out and about and at night (so thankful he is sleeping through the night). He usually takes 4-5 ounces a feeding, with an extra boost of an ounce or two with his night feedings. I even ordered bigger bottles for my morning pumping session so I wouldn't have to change bottles mid way through pumping!
I have goals. I'd like to get him on the breast part time for a full feeding over the next two months. I'd really like to have him exclusively on the breast for full feedings in the next four months. I will work my hardest to try and make sure he is given breast milk only for the first six months and will be ecstatic if we can go formula free until he is a year. I have some help that I am seeking out and techniques that I will be starting soon to work towards these y. For now, I will keep pumping, drinking plenty of water, carrying around my pump like it's a second purse, and plotting how I can convince Matt to get another deep freeze (I have to fight for real estate with his deer meat). I know I can make this work and through the challenges and mess and tiredness, I know that this little face is worth it...
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