Sunday, November 17, 2013

World Prematurity Day

November 17 is World Prematurity Day, which is apparently observed all over the globe. Perhaps you've not heard of it before, I know I never have. But today I'm seeing pictures on Facebook from all around the world of buildings and landmarks that are being lit up in purple to observe this special day. It's pretty neat. Mostly it just brings awareness that prematurity is a world-wide problem, as well as celebrating, honoring, and remembering babies that were born too early.

When Elsie was born, we had dozens of phone calls, texts, visits, and messages from parents of preemies, or friends/relatives of preemies. Everyone wanted to share their story and give us hope. We loved hearing each and every story. It gave us comfort and hope in a very scary time. Until Elsie's birth, I wasn't aware of how many people I knew that had premature children. Turns out that there are quite a few, and probably a bunch more that I'm not aware of.

Not all preemie stories have happy endings, however. To all of the families with stillborn angels, late-term miscarriages, preemies with severe health problems, or babies who died after birth, my heart aches for you. I don't want to say anything else, it's all too cliche and trite. But know that we love you and grieve with you.

For whatever reason, our special preemie is doing well. Her biggest setback currently (at least I feel it's her biggest setback) is her dysphagia, or her eating disorder. Being dependent on a feeding tube is not fun. I've been having lots of thoughts about it lately and wish that I had been more informed before Elsie's gtube was placed. But it's something that can and someday will improve, so I can't complain too much. She's making small bits of progress here and there, I just need to be more patient. A good thing is that she really enjoys picking up her own food and putting it in her mouth, and she's getting old enough to be doing that better and better. She doesn't eat it, she just chews and sucks on things like pretzels and licorice, but it's still a big step towards eating. Our most exciting moment lately was dipping a pretzel in ranch dressing, and she seemed to enjoy it quite a bit, and swallowed it. Most of the time when she has any food in her mouth, be it purees, milk, or pretzel crumbs, she spits it out. So swallowing a tiny bit of ranch dressing was pretty exciting.

It's blurry but I was in a hurry to capture the ranch dressing moment.

And more exciting news: Elsie finally got strong enough and had the desire to roll over from her back to her tummy. She's been able to roll from side to side for quite some time now, but never all the way onto her stomach. I figured she would do it when she was ready. And last Tuesday, she did! We were so proud and so excited. The first day, she did it once; the next day, three times; and every day after that, she can do it almost effortlessly. I know to most parents, rolling over is not a huge deal. I mean, Evje rolled over pretty early, and I took it for granted. But I'm pretty dang excited about Elsie being able to roll over. It means that she's catching up developmentally to where she should be.

In celebration of World Prematurity Day, here's a few pictures from Elsie's days in the NICU. Seems like forever ago, but sometimes it also seems like just a few weeks ago.

And here's our little sweetheart, happy and healthy at 10.5 months actual age, 6.5 months adjusted age.

To me, Elsie's story reminds me to never give up hoping and believing. Never stop believing in miracles. I don't, because I live with one. Happy World Prematurity Day. Hug a preemie that you know today!

Sunday, November 3, 2013

10/6 months!

Wow, Elsie will be ten months old tomorrow! Crazy how the time has flown by so quickly. I think I say that every month, but it really does.

Not a ton has gone on in the last few weeks, so there's not a whole lot to say. But I'm pretty good at rambling so let's see if I can turn that "not a whole lot to say" into several really long paragraphs.

RSV and cold/flu season is upon us, which means that we are limiting the places where we take Elsie these days. If there will be a lot of children or big crowds of people, we unfortunately can't take her with us. The risk of her catching RSV and having to be re-hospitalized is too great. I read a bunch of stories on various preemie websites about babies that had to be hospitalized due to serious illness from RSV, and even babies who have died from it. Scared the crap out of me. Needless to say, we are trying to be very careful about germs and limiting her exposure to sick people. Sanitizer is our friend. On a positive note, our area has not yet seen a big outbreak of RSV yet this season. Once Primary Children's Hospital has reached a certain amount of cases of RSV, then they will send a statewide alert to pediatricians and doctors offices, giving "permission" for them to start administering the Synagis shots. Have I told you about those yet? Synagis is not technically a vaccine for RSV, as it won't prevent the illness, but if a baby catches RSV after having had the shots, it will help to make their illness not as bad. The shots are given once a month during RSV season and are extremely expensive, which is why the doctors have to wait to get authorization before they can administer the shots. They have very strict guidelines about who qualifies for Synagis, but luckily (or unluckily, ha ha), Elsie meets like three different qualifications because of her prematurity and chronic lung disease. So as soon as we hear from the doctor, then Elsie will get the Synagis shots until April. Yay for shots once a month! Not.

We had an awesome feeding therapy session this month. Helene introduced Elsie to "hard munchables", or food that she can put in her mouth not necessarily to eat, but more to experience different flavors, textures, and to practice chewing. We had been at a bit of a stalemate lately with the baby food purees; it was hit or miss on whether Elsie felt like eating it or not. Sometimes she'd enjoy it, but a lot of the time would turn her head and clamp her lips shut to avoid the spoon. And so we gave the hard munchables a try. We gave Elsie pretzels and licorice sticks, what a fun combination, and she was so fun to watch as she tried these new flavors. She did really well and seemed to enjoy herself. Helene also suggested that instead of just baby food, which can be a little bland, to tempt Elsie's palate with purees that have more taste and flavor, like adding cinnamon and butter to pureed fruit, and spices or salt to veggies, etc. Since Elsie gets all of her essential nutrition through her G tube, we're not worried right now if she eats unhealthy food by mouth. We are just trying to get her interested in eating and for her to enjoy eating. So we came home, I ran to the store to buy a bunch of things on the list that Helene gave me (beef jerky, dried mango strips, those big thick pretzel sticks, and a bunch of Twizzlers, to name a few), and was so excited to show Clayton Elsie's new skill. Gave her a big pretzel and . . . she threw it on the floor. Tried all of the techniques that Helene showed me while we were at therapy, and Elsie wanted nothing to do with it. Mixed up some "flavored" fruit puree, and she hated it. Started crying, even. Sigh. This is why I want Helene to come live in my basement and take over as Elsie's personal feeding coach for the rest of her life. Ha ha, not really, but it seems like magical things always happen while we are in Helene's office, regardless if it is me or Helene who is working with Elsie, but then I can never re-create the magic when we get home. It's very frustrating! Since then, we still try to encourage Elsie to eat by mouth, and the majority of the time, she turns her head away, but sometimes she will have a few spoonfuls of food or will put the dang pretzel in her mouth. Then there was the time a few days ago at my sister's house where Elsie chomped on a Twizzler for a good ten minutes or so and got red stickiness all over her face and hands, not to mention all over my shirt, and I was thrilled. It's a long and frustrating road, but we are taking little tiny baby steps and ever so slowly, we are progressing.

We had our first physical therapy session with DDI, which is our local branch of Early Intervention. Basically, I loved it because the therapist pointed out everything that Elsie was doing awesome at, which just seemed like ordinary things to me, but she explained how hard Elsie was working and how this step would lead to the next step and the next and the next, and I realized how well Elsie is doing, despite all of my worries. She has overcome so many obstacles so far, and yes, she is a little behind in some of her skills, but she's getting there. She will continue to overcome and conquer.

Tasting a cracker


Being able to reach and play with her toes is a HUGE step in development, believe it or not!

Just playin' and chillin'

We were unable to take Elsie to our neighborhood trunk or treat to show her off on Halloween, which was a little depressing because she looked so-dang-cute in her costume. Thank goodness for pictures so that you can see how adorable she and her sister were in their costumes!

 Evje was a pretty ballerina!

Seriously, getting this kid to hold still long enough to take a
picture can be a real chore!

Finally got a good smile!!

Dancing like a ballerina!

 And here's our little Elsie, dressed as a "Speckticled" Owl, costume designed to compliment Elsie's glasses. I thought it fit her personality just perfectly :)