There isn’t much to say about the next leg of the adventure, except that it was horizontal, emotional, tiring, and filled with lots of bad television, amazing support and longing looks out my bedroom window. Indeed, every time the sun came out I was reminded that I was missing an entire summer.
I had planned to continue recounting the journey today, but I don’t have it in me. Maybe tomorrow. Yesterday and today has been harder than I thought. We had Lila’s 9-month NICU follow-up appointment yesterday and I will just share with you what I shared with my fellow pPROM moms.
Lila had her 9 month NICU follow-up appointment today with Dr. Hoekstra of the famous micro-preemie study: http://www.youtube.com/watch?v=7tVXAfkTdpc It was wonderful to see him as he was there the night Lila was born and grew to really love her while she was in the hospital. He’s one of our angels in all of this.
Lila was “tested” by… an occupational therapist and scored well on the cognitive, social and behavioral pieces, but is lagging quite a bit behind on her motor skills. She has increased tone in her legs, but good range of motion and flexibility that should serve her well. She also has increased tone in her right upper extremity, which is why she prefers to use her left hand. She has a head tilt, but it’s not a true torticollis, because she changes the sides that she tilts to. It’s more of a weak trunk/midsection issue.
She weighs about 14 ½ lbs, is 25 ¾ inches long and her head circumference is 16 1/2 inches. Going by her corrected age, that puts her in the 24th percentile for head, 30th percentile for height and 9th percentile for weight. Dr. Hoekstra is happy with her weight gain and does not want us doing anything special to fatten her up.
I guess we already knew Lila was behind motor-wise. I see your babes doing things that Lila’s not even close to doing. It’s tough knowing that she may very well end up with a diagnosis of Cerebral Palsy, but you know what? I’m ok with that. Everyone has been so impressed with her cognitive skills and that’s what really matters to me. I remember back in the hospital all I was focused on were her lungs and she’s kicking butt in that department. Dr. Hoekstra believes she will walk unassisted, but probably not by 18 months. She may also be a candidate for botox injections to relax her stiff muscles.
Educating myself on Cerebral Palsy is something I’ve avoided like the plague, because I was so afraid. But I think I’m ready. I’m ready to take this on. I wouldn’t change anything about Lila. She is who she is because of her past and she’s perfect. I always said I’d rather have a killer personality than be picked first for the kickball team. And Lila definitely has a killer personality. She charms the pants off everyone she meets and she’s a very good baby. She has not been sick ONCE — knock on wood – she sleeps through the night and she likes guacamole. My kinda girl, what’s not to love!
These follow-up appointments are difficult and nerv-wracking. I was such a bundle of nerves by the time we left, I bawled my eyes out. Tomorrow’s the day I pPROM’d a year ago and I took the day off from work. I’ll have to figure out a good way to celebrate with my girl.
Much love to you all and your sweet babies as we all go through varying degrees of strife. Every single one of our babies is here to teach us something important. I talk about oblivion on my blog. Remember what it felt like to be oblivious? Yeah, me neither. But I also never thought I would feel so important. I’m in the throes of the most important job of my life and that’s making sure Lila gets every opportunity to do whatever it is she wants to do in this world. She’s a warrior and I’m just her cheerleader.
That was written yesterday when I feeling happy, positive and strong. Today? Not so much. It’s been a tough day. Lila had her 9-month appointment with her pediatrician and I’d planned to ask him about when and if we’d receive a diagnosis of Cerebral Palsy. I’ve gone back and forth about sharing this information, because I don’t ever want Lila to be labeled with anything. I do not want anyone to feel sorry for us or treat Lila any differently than before. However, I think by sharing our story, it may help others and might even open up your hearts and minds to what disabilities look like. If diagnosing Lila with CP were necessary to get her medical services, then she’d already have the diagnosis. But because she’s already receiving the services she needs, there’s no need to give “it” a name. Because of Lila’s brain injury and her increased tone, that pretty much puts her in the camp of having CP. HOWEVER, the umbrella of CP is HUGE! For many, the term “Cerebral Palsy” conjures images of severely disabled children in wheelchairs. Sure, that exists, but there are also many people with mild forms of CP who get along just fine and lead happy, productive lives. This is what we’re hoping for. Besides, Lila’s going to have the highest IQ of anyone in her class, not to mention a darling personality.
It still makes me sad. No mother wants this for her child. I’m angry that Lila may struggle to do things that come easily to other children. Tyler and I are both pretty athletic (when we want to be) so it’s hard to imagine her not being able to do something that she wants to do. I’m sad now, but I know that tomorrow morning when she wakes up, that smile will make all these feelings disappear. Her uni-tooth grin has a way of doing that.
So now, we wait and continue doing what we’re doing. The weekly therapy and doctor appointments are draining at times, but the hospital has been a part of our lives for a whole year now. We don’t know any different. On tomorrow’s to-do list: keep the faith, carry on and remember to smile. Tonight? Cry it out and finish that bottle of wine.
Goodnight my loves! Here’s a quick video from Lila’s doctor appointment to show you that happiness and love can be found in any situation … you just have to look for it.