Learning to walk the tightrope of motherhood...

Tipping the Scales

One of the first battles we wound up fighting with Down Syndrome was Mer's weight...and it took me longer than it should have to figure out why exactly it was such a fight.
Our Story
At the hospital I was fairly determined to breastfeed my baby. Right after Mer was born, the nurses tried to help me get her to latch on, however it didn't work out. I had worried all through my pregnancy that I might have inverted or flat nipples. And, though this is not entirely the case, they don't exactly stick out either. This can make it difficult for a baby to nurse, so I learned how to use a nipple shield to give her something to latch on to but still get milk "from the source."
As I fed Meredith in the hospital, I remember thinking that she didn't suck consistently while she was nursing and she certainly didn't seem to stay awake to eat very long. She would have just a bit and then fall back to sleep quite quickly. She also didn't wake up screaming and wanting to eat...she would just sort of stir and squeak and that was my sign to seize the opportunity and feed her. Maybe I wasn't as blunt with the hospital staff as I should have been about how things were going...I was so anxious to be doing things "right"...but in any case, they didn't seem concerned so I didn't first.
Meredith was born at 7 lbs 5 oz. She had dropped maybe to 7 lbs by the time we left the hospital, and was at about 6 lbs 12 ounces about 4 days later. This is all well within the normal limits of baby's weight loss after birth. However, it should have turned around and started picking up shortly thereafter.
But it didn't. About a week went by, and somehow, probably aided by raging hormones and maternal instinct, I started to get the unsettling feeling that Mer was not gaining weight. How a person can tell a differences of just ounces, I don't know, but I could. By the time we finally called our pediatrician and the nurse invited us in for a weight check, Mer was down to 6 lbs 8 oz. This is not far out of the normal range for weight loss after birth. However, the nurse asked us to come in again the next day and meet with the doctor, just to see.
The next day, Mer's weight was still 6 lbs 8 oz, so the doctor suggested that I start pumping a little bit to supplement the nursings. When I came in a couple of days later and her weight still hadn't budged, he suggested even more pumping, or just pumping and not nursing at all. In hindsight, I have to say that my doctor was very supportive of breastfeeding overall, however, as I've already mentioned, my hormones were a mess at this point and so any suggestions not to exclusively and completely naturally breastfeed really upset me. Not only did this make me feel like I was failing as a mother because I felt incapable of providing proper nutrition to my daughter, but I also felt like I was missing an opportunity to help her. You see, breastfeeding strengthens the mouth muscles; these muscles that will eventually be very important in speech and it's important that they develop properly.
One of the most common effects of Down syndrome is hypotonia or low muscle tone. This low muscle tone includes the muscles in and around the mouth. Thus, when Meredith was eating, it took even more effort than it takes a typically developing baby to eat, so she tired out more quickly and went back to sleep without getting a full feeding. Not getting enough food made her more tired, of course, and so she slept longer and more soundly and was even more difficult to wake for feedings. You can see how quickly this became a vicious cycle!
Our Plan
So, although I was initially quite frustrated by being asked to bottle-feed Mer, we got into a routine that works for us...and the wise women in my life remind me that THAT is the most important thing. We chose to let Mer nurse a bit, so she continued to associate food with the breast and get some muscle strengthening, but then we followed up each feeding. This turned things around for us fairly quickly. The nurses at the pediatrician's office got to know us quite well as we went in for weight checks twice a week for a while, then once a week, and finally just on occasion. They have held their breaths along with me as we put Mer on the scale and they celebrated with me over EVERY SINGLE ounce that she gained!
I also have to give a huge shout out to the women in a new mom's group sponsored by our local hospital that was facilitated by a sweet old old-order Mennonite woman. She was not afraid to actually watch me try to feed Mer and give suggestions on positions and things that might help. Also, the advice that I gained just by listening to other moms work through their own issues has been invaluable! I never would have guessed that I would have gotten so much comfort and confidence from a group like this, but now I would recommend them to anyone who is a new parent!
Anyway, in July we felt so good about how she was doing that I tried to move toward breastfeeding more, but almost immediately her weight gain slowed down and I began to become more nervous again. And, with daycare right around the corner anyway, it finally became a battle that wasn't worth fighting entirely. Now Mer nurses in the morning first thing and when I pick her up from the babysitter. Throughout the rest of the day she gets milk that I've pumped for her. Maybe this isn't the easiest thing in the world, and maybe it's not the best situation it could be, but it works for us, right now, so that's what we're doing!
Oh, and Mer's last weigh in put her at 10 lbs 9 oz ! She's come a long way!

UPDATE: October 2011: Over the summer, Meredith's weight seemed to stall around 14 and a half pounds. (Like, it hung there from maybe April to July.) Meredith is now taking levothyroxine in the morning to combat the thyroid antibodies that we recently found. She has crossed the 15 pound mark and seems to look a little longer every day. Fingers crossed that this little growth spurt continues.