Tag Archives: Sandifer Syndrome

Giant update


Oh my gosh. I am a bad blogger. I keep writing posts in my head but I so rarely get to type them out! I love my little Elia with all my heart…but she is a needy girl. If I am more than three feet from her at any time she is UPSET. I get it, I mean I cried every day she was in the NICU and we were separated, but now we’re in the same house. Did not expect separation anxiety from a baby this little and new. So I rarely get to type with two hands, and since I’m a slow typer with one I just don’t blog. Even now, she’s sleeping on my lap on a pillow. See?

blogging with mama

So much as happened since our last post. Let’s make a list. I love lists!

  • Elia started nursing. Amazing!
  • I am going back to work! 12.12.11. Only 5 days away!
  • I am trying to rebuild a work wardrobe since I am LARGE from having a child.
  • Ian is still having issues. Did I tell you? He reverted completely from being completely potty trained while I was in the hospital. Now we’re trying to get back on track but it’s a disaster. Good days, one or two, maybe no accidents. Bad days, we change six times. FML. Back to the list.
  • Elia has reflux. And Sandifer Syndrome. And we got to find out via an ER visit, emergency ambulance ride and scary visit at American Family Children’s Hospital in Madision, WI. Which actually is an amazing facility I should tell you about. Anyway, her medical condition is rough, but we’re learning.
  • Elia’s newborn photos with our favorite photog, Dan Woolf! Did I tell you he’s amazing? Wait until you SEE some of the photos he made for us. You’ll squeeeee, or maybe that’s just me. But seriously, amazing.
  • Bill and I made a new 5 year plan. We make one yearly, reassessing the previous ones. I’ll share it with you sometime. I love goals and planning.
  • My Mommy taught me how to make her amazing pie crust. Maybe I’ll share that recipe sometime too. She’s good. Now I need to practice, but again, I need more than one hand. Wearing a baby and rolling out a pie crust is hard people.
  • We’re co-sleeping. Or co-bedding. Whoops. Did NOT see that one coming. But here we are!
  • We had our first little Thanksgiving as a family of four. Together, just us. It was heaven.
  • BLACK FRIDAY shopping! In our jammies, at home. My husband was blissed in his element. For some reason, Bill just loves it.
  • Now we’re decorating for Christmas. I love it!

Some detail on a few of these. First, nursing. After over 8 weeks of exclusively pumping, no sleep and what felt like NO progress (we talked about it here) we met with Sandi in lactation at St. E’s and talked for nearly 2 hours about our nursing dilemma. (Side note, I LOVE Sandi. Love her, love her, love her. She is amazing.) She knew what we’d fought through and gave me permission to quit. You know it’s bad when a NICU lactation consultant tells you that you can quit…and that maybe you should to save your sanity. uh-oh. So we went home and did the bottle thing. 1, 2, 3…Elia starts to refuse them. Seems like she doesn’t like formula? On bottle #4, Bill asked me to try to nurse her as she wasn’t being patient and low and behold on she latches like a pro. Baby girl eats for a half hour. WTF?

And that’s it. After weeks of crying-no sleep-drama, suddenly we’re an active breastfeeding team. Not perfect, but we’re rocking it now. I guess we just had to call her bluff and show her what she has to drink otherwise. Now she and the boob are best buds. It’s her pillow frequently. Wish I was kidding.

And now I’m faced with the dilemma of pumping at work. Which I can do (I pumped at work for 6 months with Ian until he was 10.5 months and things fell apart), but I loathe it. It’s so hard to fit it in, not to mention building a professional wardrobe where you can whip out your boobs to pump during the day. Professional attire is NOT meant to fit someone with a leaky 36 DDD rack. Cannot wait until we’re past this phase and the girls shrink it up again. Any advice on how to do this is welcome!

Co-sleeping. A county nurse, Karen, came over on Friday to do a free assessment of Elia. Score! I thought it was awesome, she weighed her and evaluated her, which is so helpful for me since I never know if she is on track or behind due to prematurity. Gestational age vs. actual age? I can’t figure it out. What we learned is that she’s doing very well and is right on track for her actual age, which is awesome. But I gave the poor nurse a heart attack when she learned Elia sleeps with us. Sorry Karen, this is our life. You were nice, thorough and I know you’re just doing your job. Didn’t mean to freak you out.

I have to give huge props to Nicole from Baby Food Scoops for this blog entry on co-sleeping. And this article from Dr. Sears. And this one on safety. We had kind of already made this decision when I read Nicole’s post, but she includes such great links regarding research and how to do it safely that I think everyone should read her post, whatever side of the co-sleeping fence you’re on. I was always on the “not in my bed or in my house” side…until we had Elia and her issues to deal with. She has Sandifer Syndrome. More on that later. I don’t have the energy to share those details right now. It leads her to have scary episodes where she doesn’t breathe. When we lay her down in her own sleeping space, she has an episode. Every time. When she is next to me she never has one. She breathes unevenly and sporadically on her own. With me it’s slow, steady and normal. It’s helped her learn to nurse, helped me keep my supply up and helped us be a successful breastfeeding team. Bill and I both agree it’s best for our family at this time. Gosh, I never thought we’d be there. But you know what? The thing I learn over and over again in parenting is that you WILL eat your words. Whenever I have said “I’ll never…” we have done it. Because you know what? Kids are all different and you do what it takes to make it through. There is no right or wrong way. There’s what works for your family.

Know what I find funny about the whole co-sleeping thing? How many, many people will tell you they did it too when it comes up in conversation. It’s amazing, kind of underground, but tons of people are doing it. And it seems that most babies survive.

So Karen hands me this onesie all excited:

i sleep safest

And I consider to tell her or not. I have an honesty policy. So I tell her. And she nearly has a heart attack. I explained myself, she told me about the statistics, I told her I read all of those, and I studied research and tips on safety. STUDIED. She reiterates her stance. I try to give the onesie back, she insists I keep it. I think she thinks it will make me change my mind? Know what will? When my daughter can manage a Sandifer episode on her own, thankyouverymuch. Until then, she is with me where she can snack at will and survive.

So, that’s been the last month+. Really, the Sandifer’s is why you haven’t heard much from me. That and I’ve been trying to find a pair of pants to wear when I have to go back to work. I’m trying to come to terms with my current size. I’m the biggest I’ve ever been. Ever. I weigh 30 pounds more than before I had kids.

I feel like I’m wearing a fat suit.

And that internet, is all she wrote for tonight. Until later.