Whew. It is much harder to find time to blog with Clara here at home with us. It’s a pretty fantastic problem to have. Clara continues to sleep really really well at night (12-13 hour stretches, uninterrupted thanks to enteral feedings through her tube). This rest is great for her and is helping her grow. Robert and I are still up every three hours to start those bolus feeds and for me to pump, but we’re so very thankful that this baby rests well. Those long hard stretches of sleep at night mean that she’s not really that into napping during the day. She takes 3-4 thirty minute naps throughout the day and that’s about it. But I’ve figured out her routine (for now, at least… I’m sure that since I’m writing that she’ll change it up immediately) and have learned her cues pretty well. She eats every two and half hours or so, stays awake and plays for awhile after eating and then takes a thirty minute nap before it’s time to eat again. We’ve gotten a good naptime routine down (paci, lovey, mobile, her sound machine and some Classical music) and she will put herself down for a nap in her crib pretty well, although her favorite way to nap is in the stroller on a walk or in the carseat during a drive. Our nighttime routine is coming around too – a bath (which she no longer hates), jammies, swaddled up for reading books, singing a few songs, saying prayers and then off to her crib with her sound machine, Mozart and a lovey. What we were always told about a NICU baby seems to be true – she sleeps just fine with lights and noise, maybe even prefers it to dark and quiet.
When she’s awake, she’s happy. Oh my, is she happy. We keep saying, “I guess if we’d been through all she’s been through, we’d be pretty happy too,” but I know that many babies who have faced chronic sickness like this don’t have the pleasant disposition that she does. She is very rarely fussy. She is almost always smiling and loves to babble and talk – especially when you’re singing to her. I think she’s trying to join in! She’s very social and likes to be talked to and be interacting with people. She loves her swing, her bouncy seat, her stroller and her playmat. Of course her changing table is a favorite spot, too, as is naked time. We’re working on tummy time to build up her strength and although that’s not her favorite, she’s doing better with that every day too. Her favorite place to be is outside. She can’t get enough of the fresh air, the trees, the birds and the sounds. Her eyes open so wide and she just takes it all in. The slight respite from the oppressive heat this week has been nice. Even on sweltering days though, we’ve found ourselves on the screened-in porch a lot. We’ve made one trip to Costco, one trip to the grocery store and an epic outing to Greensboro for me to order a bridesmaid dress. Even though she’s been such a trooper through that, the excursions and the very few visitors we’ve had do wear her out, so we’re trying to make a conscious effort to keep things quiet and low-key as much as possible.
We’ve been to see her pediatrician twice – once on the Friday after discharge and again the following Monday. She gained three ounces in her first weekend at home (average of an ounce a day!) and we’ll visit the pediatrician again tomorrow for another weigh in. She’s been eating really well, so I’m expecting more weight gain to be shown then. All of our follow up appointments begin this week. I’ve been warned that the feeling of “normal” that we’ve experienced the last week or so might feel a bit like a honeymoon coming to an end this week as we visit lots of doctors and are reminded that we still are caring for a sick baby. We will be following up with: her regular pediatrician, pediatric surgery, cardiology (for pulmonary hypertension) a developmental pediatrician with a program called “Kids Eat” for feeding issues, physical therapy, and speech/hearing. That’s a lot of appointments, but we’re prayerful that we’ll get good reports, that we will continue to see weight gain which seems to be the biggest indicator of health, and that we can begin taking steps towards weaning her off the feeding tube for good pretty soon.
So, we’re all doing well! I’ve been so so so so blessed to have my mom spend most of each day with me since we’ve been home. It’s like my own personal baby-nurse. She’s helped me get the house back under control (apparently spending eleven weeks at the hospital will make a lot of things fall by the wayside!), made sure we had meals to eat, given me adult interaction, and been an enormous help with Clara. We’ve been calling her “The Burp Whisperer,” because she can get a burp out of Clara when no one else can! The timing for Clara’s homecoming has been great since the academic year at Salem was just wrapping up and she’s been available to help in so many ways. I’ll be sad when the day comes that she has to leave me all on my own!
Okay, here’s what you really want to see. Photos of Clara at home!
|Hanging out on the screen porch
|Snuggling Dad in the recliner
|Taking a nap in my very own crib
|I love my changing table!
|I spend lots of time in the glider with mama
|Family's first walk
|This stroller is fantastic!
|Loving her swing (thanks, cousin Eleanor!)
|Patchwork baby on patchwork quilt
|Kicking my legs and sticking out my tongue
|Rufus is never far away
|This bouncy seat is pretty fantastic, too (Thanks, cousin Caroline!)
|My first walk with my destined-to-be-BFF Chloe
|Snuggling Big Daddy
|Playing on my playmat (Thanks, Cathy!)
|So much to learn!
|Listening to Sweet Mama sing on the porch
|A few new additions to the nursery
|What a wardrobe! Thanks for all the hand-me-downs from cousins and from my buddy Palmer!
|lots of hairbows...
|Couldn't resist this clock for her literature themed nursery
Life is good. God is gracious. We are continually thankful for this special blessing.