I'm typing this one-handed, with a baby snuggled on my shoulder. Please forgive any spelling or capitalization errors. :)
Ben will be 6 weeks old tomorrow! He's a pretty typical newborn. He's super-snuggly and still likes to tuck his feet up so he's in a little ball when you hold him. He's mellow - only fusses when he has gas or needs to poop. He has the most adorable gummy grin, but I've only been able to see it when he's sleeping. Evan insists that Ben smiled at him - twice - yesterday, but I missed it. Hopefully we'll get some real smiles soon.
The hardest part of this whole shebang - so far - has been breastfeeding. I nursed both of my other kids for at least 18 months, and it was a precious part of my mothering experience. When we found out we were pregnant with Ben, one of my first reactions was to celebrate that I would be able to breastfeed again. I've realized that I value breastfeeding not for the milk itself, but for that guaranteed intimate time with my baby.
Ben's first week was rough. He latched fine, but was sooooooo very tired - I think because of the jaundice and because of his heart. He'd nurse for a couple of minutes, then he'd totally knock out. I kept having to wake him up (not an easy feat!) and I got worried that my milk supply was dwindling. He was getting some milk, but he wasn't peeing or pooping as much as he was supposed to, and I didn't want my little boy to end up back in the hospital for dehydration. I rented a hospital pump and called all the La Leche League people and lactation consultants that I could find. I also did some research about nursing babies with Down Syndrome. It turns out that breastfeeding can sometimes be difficult - cardiac problems can mean low energy, and D.S. babies often have low muscle tone, so their mouths and cheeks aren't strong enough to stimulate milk supply and get enough to eat. Breastfeeding is supposed to be particularly beneficial for D.S. babies because they need the immunity boost from breast milk AND the act of nursing is good exercise for their facial muscles.
I have been using the breast pump and feeding him breast milk in a bottle for the last 6 weeks. On the one hand, the milk is really good for him. On the other hand, I'm spending a lot of time hooked up to a machine instead of snuggling with my baby. We still try nursing a couple of times a day, and Ben seems to enjoy it ... but he isn't getting a whole lot (as far as I can tell).
I know a few women who pumped exclusively for 6 months to a year, and my admiration for them has grown by leaps and bounds. It is hard work. I haven't figured out a schedule yet, so I try to plan outings in 90 minute intervals, because I have to pump every 2-3 hours. No longer can I do several errands at once.
Emmett has also had to sacrifice additional time and energy while I pump. I can't do many other things while I'm pumping, so he's stepped up in every way - getting dinner, doing baths and bedtime with the older kids, and running assorted errands. He would have had to do some of that anyway, but he's gone above and beyond the call of duty. It also helped to have family in town for a few weeks. My mom and Emmett's parents took turns visiting. They entertained Evan and Corrie, fed Ben bottles while I was pumping, and did multiple loads of laundry and dishes.
Not being able to breastfeed has been ... humbling. I didn't realize how proud I was of my ability to feed my babies! The first Sunday back at church, Emmett pulled out a bottle to feed Ben, while I felt self-conscious. I don't think anyone at church cares - at all - about how I feed my children, but evidently, I do.
I'm pleased that we've made it through the first month, and I'm committed to pumping through the end of month two. We'll decide on a monthly basis what our family can manage. Fortunately, I've been able to store lots of milk in the freezer, so that will help if I do need to stop pumping. And I'm holding out hope that as Ben gets older - and his heart improves - we'll be able to establish a regular nursing relationship.