Looking back, baby, I remember. I remember that night and I remember those five months in the hospital. Some memories sweet, and some memories I long to forget, but know that they are a part of who we are now.
I remember being confused. Why hadn't the doctors stopped my labor by now? This wasn't what was supposed to be happening. It was too early for the baby to come. Surely they realized that. Didn't they?
I remember being in agony. The pain of the contractions while being strapped onto the gurney and unable to move my body into a more comfortable position. Feeling my water break on the helicopter and knowing that we were past the point of no return. This baby was coming tonight, whether or not it was too early. The agony of pushing my tiny baby out of my body, while desperately wanting to keep her safely inside.
I remember being in denial. This sort of thing could never happen to me. I was young, healthy, ordinary. This sort of thing only happens to people who . . . and I couldn't finish the sentence. I didn't know what kind of people this happened to, but certainly, it didn't happen to me. The NICU nurse, offering me a tiny, 3-inch-square diaper to take home with me, and I wanted to throw it across the room and never look at it again. I didn't want that reminder of just how small and fragile my baby was. My baby, who my body had unkindly evicted just a few hours ago. She should still be inside my womb. I didn't want to see her. I didn't want to see how damaged and delicate and close to death she was. I wanted to pretend that none of this had happened and that I could go home and finish the last four months of pregnancy in peace.
I remember crying. A lot.
I remember holding you for the first time. I was worried how you would handle the stress of being moved and handled. But I was eager and wanting to hold you. You were so so tiny. I remember how it felt to feel your skin next to mine. It was a special moment that I will always treasure.
I remember sitting at your bedside for hours. Not reading a book, not surfing the internet. Occasionally sending an update to a loved one by phone call or text message. Just sitting, watching you sleep, willing you to grow and to heal.
I remember waiting. Watching other babies move on and progress and go home while we remained. Waiting for milestones, which were slowly but surely reached. Waiting for test results, for ultrasound results, for surgeries. Waiting for healing to happen.
I remember feeling grateful. Grateful for help and love and support and blessings. Grateful for strengthened relationships. Grateful for little things that helped us along our journey. Grateful that things could have gone a lot worse, but didn't. Grateful for miracles.
Monday, September 9, 2013
I can't believe that our little Elsie is eight months old. Of course, developmentally, she is four months old. Either way, the time has gone by so quickly. There haven't been many changes in the last month, but here is what has been going on:
- Elsie's PEG g-tube was replaced with a button g-tube. All that this means is that instead of the tube coming out of her stomach with 6 inches of tube outside of her, now there is only a flat button that lays flush with her skin. They place the PEG tube initially and let the skin around the incision heal, and then take the PEG out and replace it with the button. It's like when you get your ears pierced. Initially, you only wear the studs, keeping them in all the time for eight weeks, and you twist the studs periodically so that the skin around the hole can heal. After the hole has healed, then you take the studs out and wear whatever earrings you want. Not sure if this analogy makes sense to you, but it does to me. Anyway, we went to PCMC for the procedure, it was very quick once we finally got in. Elsie only needed minimal sedation, no intubating or anything invasive like that. She did great with her oxygen while being sedated, and after she woke up, I took her home. She was sore and a little cranky for the rest of the day, but was fine after that. The button is a lot less noticeable then the PEG and there is less for Elsie to grab and pull on. The set up for her feedings is pretty similar.
- Still working with our awesome feeding therapist. Elsie is still struggling with the bottle, and hasn't been able to have the same success as she did that one time. Not sure why she was able to rock the bottle that time and not sure why she can't do it now. She gets pretty annoyed when we try to do the cheek support. Instead, we place the bottle in her mouth and let her gum and chew on it. She doesn't suck on it much, but as Helene told me, how much longer in her life would she be sucking on a bottle anyway? Maybe six months. Sucking on a bottle is not a necessary lifetime skill, and so if she never gets the hang of it, then so be it. The good thing is that even though she cannot suck, she CAN swallow and eat food from a spoon. So we're still working on the spoon-feedings, and Elsie's gagging is decreasing day by day.
- Speaking of eating, our little fatty is up to 13 pounds, 5 oz! She is not on the growth charts for her actual age (8 mo), but if we were going by her adjusted age (4 mo), then she would be in the 25% for weight and the 35% for height. Everyone always marvels at her chubbiness and her fat rolls.
- Elsie can *almost* roll over from her back to her tummy. She's so close. Her darn shoulders just get in the way. I wouldn't be surprised if she gets it in the next week or so. She doesn't enjoy tummy time for more than a few minutes, so she better hurry and learn how to roll from her tummy to her back.
- She's great at tracking things with her eyes. She can follow conversations really well with her eyes, which bodes really well for her cognitive skills. Helene and I were laughing the other day while we were chatting because Elsie was watching the both of us as we talked like it was a tennis match: look at Helene while she talks, then turn and look at Mommy while she talks, and over and over.
- Elsie's new skill that she learned this last week is to blow raspberries with her tongue out. Again, therapist Helene tells me that this bodes well for her cognition. Apparently, it takes quite a lot of coordination to make this funny noise. Way to go, Elsie!
- She still doesn't cry or talk very loudly, but she is definitely talking a lot more often. I love listening to her little voice when she's chatting to herself, it's so cute.
- She still loves to suck on her fist and occasionally some fingers. Even when she gags herself, she keeps on trying to suck. Such determination. I'm always amazed at my resilient little girl.
- We got the go-ahead from the pediatrician today to arrange for the oxygen company to come pick up the oxygen tanks and machines that have been hanging out at our house unused for the last several weeks just in case Elsie needed some additional oxygen. Hooray to get rid of the oxygen hopefully for good!
- We've brought Elsie out among some pretty big crowds lately, first to church for an hour last week, and then to Clayton's grandmother's viewing and funeral this last weekend, as well as a mission farewell for Clayton's cousin Alicia. Yeah, it makes me kinda nervous to have her around so many people with the potential for germs all around. But I figure that RSV season will be here soon and we may as well get out with Elsie now while we can. Once winter illnesses start coming into season, we'll go back into our protective bubble and keep her at home. It was kinda fun to bring her out around Clayton's extended family; Elsie is sort of like a celebrity. She enters the room and everyone rushes over to see her. Everyone wants to see our special miracle baby :)
|Snuggling with Uncle Justin|
|At PCMC before her gtube replacement|
|These are the cute jammies/scrubs that the hospital provided for her to wear|
during the procedure. Such a cutie.
Here's a little video of little miss chatty as she blows with her tongue and plays with her burp cloth. We love this little sweetie! Happy eight months!