Nutrition Clinic & Occupational Therapy

Yesterday we began another adventure in Evan's short little life. We made our first ever trip to Children's Mercy Hospital. After our needed meeting with Tiffany we went back to Evan's pediatrician with the recommendation of him seeing a speech therapist. The doctor referred us to the Nutrition Clinic at CMH. They called us Tuesday and said they could get us in Wednesday at 11am or we'd have to wait another week. I most certainly was not about to wait another week.

We woke up bright and early to make sure I could get there without getting lost. I hate driving downtown, but it was a necessary evil. I made it there in plenty of time. We sat in the waiting room and then a young, she looked younger than me, lactation consultant had us go into an exam room. She asked a ton of questions and then watched Evan as he nursed. Her immediate response was, does he has reflux? I told her "not that I know of." All of the doctors have said that his congestion is due to inflamed nasal passages. She shook her head and said "no." When combined with the other signs he's showing, ie. arching, fussiness after nursing, need for movement and others, it appears he has a type of silent reflux because he doesn't spit up. Great, I recall a couple of December Mamas who had to put their babies on medications for it and the amount you have to pay is outrageous for infants. Anyways, that is just one of several problems.

Next up, he will not open his mouth wide enough for nothing. And of course the longer I wait the more ticked off he gets. He also sucks his top lip in which creates an issue. And to top it off his tongue cannot suction properly to extract the milk he needs and therefore is decreasing my supply. This includes the inability to curl his tongue into the "u" shape to cup the breast properly and the inability to keep suction and creating a "clicking" sound which makes him slide up and down the nipple. The LC said she had a book of exercises at her desk and was going to make copies for me. So I sat there and waited.

She came back a few minutes later with another lady. She brought in an occupational therapist to evaluate Evan because she could tell by my misshapen nipple that he doesn't know what he's suppose to be doing. The OT asked a bunch of the same questions as the LC. She then observed and her immediate inquiry was whether or not he has reflux. I again said "not that I know of." And she said, "honey I hate to tell you but he does have it based on the way he's acting and sounding." GREAT! So then we moved onto how to solve his issues. First off, after eating he needs to stay upright to reduce the acid coming up. Secondly he's looking for something to suck on to help move the milk out of his stomach. We've always thought he was still hungry and tried to force more milk or formula on him, either through SNS or with a bottle. I told the OT that he's started to refuse bottles. She said that's because he's needing to suck on something to get the milk out of his tummy, but he doesn't want the added nutrition, it's only complicating the problem. He can't keep the pacifiers in his mouth and he'll only take a finger or boob to get calm, but again the boob tends to complicate it if I let down again.

Then we moved on to what we can do to improve his nursing. We went through three different exercises. First we worked on his suction and the tongue muscle. It took a while to get that one down because he did not like me taking the pad of my finger off the roof of his mouth. He's accustomed to the pressure that's created when he squishes my nipple up there. After several minutes and tries later I got it down and he was calm enough that I could work on the muscle for a while. Next up we tried and exercise for getting his upper lip to quit getting sucked in. And finally a cure for his "fish lips." The last exercise should strength his jaw and help create an atmosphere where he will want to open his mouth wider. We have an awful longer road ahead of us as I'm supposed to do these exercises before he nurses every time. We'll see how we do this week as we have a follow up appointment with the OT next week.

It's been a long, slow, hard road, but I feel like I may be getting somewhere. Only time will tell but I am determined to getting off the SNS and back to solely the breast.

In light of everything that is going wrong I have been able to keep his nutritional requirements met apparently because at two-months of age he has now reached 12 pounds 7 ounces. Definitely a little light at the end of this tunnel.