Anyone that knows me, however, knows that I will stand up for what I believe in. I believed it was right for me, and my child. So, there the dream began. While still pregnant, I made my intentions known. I was going to do the impossible (or at least very difficult): I was planning on breastfeeding my baby with Down syndrome.
I knew right away that Josiah had low muscle tone. Although he understood what to do, and demonstrated some interest, sucking was not easy for him. It was obvious. He worked hard for every sip of milk he took. It was time consuming, exhausting, and tested every ounce of patience I had.
Josiah breastfed exclusively, for about five months. He weighed 9 pounds at five months. Our first weighed 15 lbs at the same age. Our second, weighed 13 lbs. On 3/12/12, I wrote the following in my blog:
"We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At J1's four-month check up, he weighed 15lbs. J2, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3"
And so it continued... I continued to breastfeed. Ultimately, we added cereal and began supplementing (minimally) with formula. Little by little, Josiah started gaining weight. The peanut that once fell 'below the line' on the DS growth chart, now charts on the 90th percentile. On the 'normal' growth chart, he didn't even plot on the chart, now charts at around the 50th percentile.
I have to give credit to an unknown friend and support. By that, I mean a person whom I have never met. She is my friend KF. She is a lactation specialist and has been an unwavering support during every frustrating moment. She returned every call, called me consistently, researched, and supported my every attempt to make it all work. Without her, I am convinced that my breastfeeding quest with Josiah would have failed.
Instead, Josiah is turning two in 8 days. He has breastfed this entire time. I worried about having to wean him, but HE made all the choices. In the early part of summer, he decreased his nursing to once a day (first thing in the morning). I could see the end coming near. In August, he had the croup & we enjoyed what I call 'the last hoorah.' For four days, while sick, he breastfed 4-5 times per day. I kept asking him if this was his last hoorah. Once well, he went back to once per day. If he was testing me, I proved that he would get anything he needed. If it was just for comfort, he got that too.
Regardless, yesterday he woke up and decided he was all set. He didn't nurse. He had no interest. He's growing up and I know it. I didn't push and told him it was ok to be a big boy now. And so it was. We went the day without breastfeeding. Today, like yesterday, he woke with no interest in breastfeeding. Day two and he's done it all himself.
Though I miss that certain bonding time, I have been fully prepared to see it end. I will forever remember, and enjoy, the last hoorah that Josiah gave to me in August. He knew I would miss it. He, too, knew he was letting go. And so it is. We have reached the end of an era. He's almost two, almost 27 pounds, and has said good-bye to breastfeeding.
“Never give up on what you really want to do. The person with big dreams is more powerful
than the one with all the facts.” ~ unknown author
