Happy Easter

Has it really been almost a month since I have posted? I must say we have been busy. Between doctor visits, figuring out our future (more on that at a later date) and taking care of the girls, I found little time to sit down.

Now that we are playing man-to-man (Grammy and Daddy have been in town this week) we have been able to do many things and go many places with the girls.

Being that today is Easter, it seems only appropriate to post some pictures from last night's egg dyeing. While Savannah used a less messy and more traditional approach, the twins were quite unconventional in their's. Possibly the funniest moment was when Adeline looked quizzically at her new green hands. I was quite impressed that she even took part being that she leans toward "sensory issues." We had a good time and we very thankful for the bath time afterward. I was MOST thankful that I wasn't playing a zone defense because the humor in the mess would have been much harder to find.












The Easter Bunny stopped by this morning and dropped off a few baskets and hid the eggs outside (in freezing temps!). The girls were quite excited when they woke up. Considering we were in the hospital last year with Adeline, almost anything would have been a step up from last year. Savannah loved her candy and the girls liked their new rides.






We ended our morning with an egg hunt. Savannah is an expert by now - lot's of practicing has taken place over the past couple of weeks. Lila Grace decided to take part but Adeline had no desire to be anywhere near the grass. Somehow it rubs her the wrong way even through the winter coat and shoes.







Happy Easter. I hope you are having a wonderful day with friends and family.

Third Child Syndrome

I have been meaning to get these pictures up. While Jeff (the girls' occupational therapist) was here last week, he worked on feeding. Much to my chagrin, he asked for utensils. Utensils mean mess in my book and I am already tired of cleaning two high chairs after each meal - I won't even go into my floor woes.

Of course, I handed over the spoons and bowls and watched as Lila Grace dove right into her food. It was like she had been secretly practicing behind my back. "She is ready," Jeff announces. Ready? Ready to make a mess and fling yogurt on the walls. To prove me wrong, Jeff dumped yogurt into the bowl and held the non-dominant hand as Lila scooped and fed the whole container of yogurt to herself. During this process, Jeff looks at me a bit puzzled. Clearly, he was waiting for me to turn this into a photo opt. I was thinking how nice it was to watch someone else feed my girls. Yes, I got the camera and took the pictures. Like all good mothers would do?

As I uploaded the photos, "third child syndrome" kept running through my head (yes, she is technically my third child - just not my smallest). This would have been big news in Savannah's life. Also, Savannah would have been digging into Yobaby yogurt while Lila got the cheaper and less organic brand - Yoplait. Third child syndrome or just tired and cheap???

Moving in the Right Direction

Continuing with the "Celebrating Adeline," theme, I tried to catch some "walking" on video. Well, we really aren't walking, or for that matter even close, but we are up and moving in the right direction. She just recently took to her push toy and hopefully will continue to find it useful. That is, as long as daddy doesn't set her up for failure again. (see the video) I still have my fingers crossed that she will be walking in the next couple of months.

NORMAL!!!!!!!!!

After finishing up a three hour cardiology appointment with Adeline and I was ready to get back on the road to pick up my other two girls. While sitting at a red light I decide to check my voice mail since I didn't have reception in the hospital. When I hear our genetic counselor's voice, my heart drops to my toes!!! No, I am in traffic - I am not ready - I can't hear this now!! Needless, to say it was the last voice mail I was expecting as the results were not supposed to be in until later this week. The lab moved faster than expected which goes against all things my husband has told me about science. The results were in and they were NORMAL!!!! Tears and sweat poured out of my body. I wanted to stand up on top of my car and tell everyone that my little one pound baby still has a chance at being normal. I am so thankful and relieved.

It has been quite the ride these past couple of weeks. I knew the news would come while Alex was away and I was terrified of what it might do to me. How could she not be normal? You can tell she is "there," just interact with her. As my husband put it, "It is black and white. She either has it or she doesn't and there is nothing we can do about it." Well she doesn't have Williams Syndrome or any other chromosomal abnormality. At risk of stating the obvious, I am eternally grateful to have THREE girls who are healthy and thriving.

It is amazing what a bit of perspective can do to you. As I am calling Alex, he is trying to get a hold of me with news of his own. We got on offer on our house at the same time we were told Adeline's test results were normal. I have been waiting for this offer but after hearing such good news about my littlest girl, I seem to care much less about the house and move and just want to revel in my girl. I am thankful for the outpouring of good news yesterday but I am most thankful that I get to walk beside this amazing baby as she gracefully masters life's hurdles.

Waiting. . . Waiting. . . Waiting. . .

Still waiting with all fingers crossed that results come back quickly and without evidence of Williams Syndrome. Don't know if it is the stress or all of the viruses going around but I ended up sick in bed yesterday. I think all of this waiting is making me sick with worry.

Lila Grace pretty much sums up my emotions in this picture



While stuck in the waiting game, I think it is worth reporting that Adeline tried to sneak up the stairs yesterday. That is a big deal for her as her adventurous side is just beginning to emerge. She is also starting to use a push toy - much to her dismay. She clinches her fists and resists the best she can but eventually she takes a few steps. Crawling is easier but Miss Cynthia (her PT) is forcing her to get up and moving. I can't wait for her to walk but I am afraid her trepidation is going to keep her cruising furniture longer than necessary.

18 Month Milestone???

As I continue to walk down the road of "prematurity," I feel as though my girls are starting to evolve into typical toddlers. They giggle, fuss, play games and get into everything that is off limits. Oh, did I forget to mention that they fight? Yes, that too. All of these things point to normal toddlerhood right?

On the flip side, I feel like we are stuck in the prematurity rut. A typical week looks like:

Monday - Physical Therapy
Tuesday - Speech Therapy
Wednesday - Occupational Therapy
Thursday - Physical Therapy
Friday - Special Instruction

Our list of physicians include the following disciplines:

Pulmonology
Cardiology
ENT
Genetics
Opthamology
Developmental Follow
Dentist (soon)

We have yet to "fire" any of our therapists or doctors. Shouldn't the list be shrinking if we were moving closer to normal? The girls are officially 18 months. I didn't expect our lists to be this long a year and a half in.

Everywhere I go I hear how well the girls are doing. I am in agreement. Look where they started - so small, week and questionable. Today, they are full of life and opinions. Yes, an opinion is what I prayed for day in and day out for Adeline. God answered that prayer and without my asking gave a pretty strong opinion to Miss Lila as well. Normal toddlers?????

I am not sure where I am going with this post. I guess it is evidence that I am still on the fence when I look at the girls. I am so proud of them and love every last bit of them. I love to put up pictures of the day's happenings and comment on how they are growing and developing. Sometimes, when I read through this blog I feel like prematurity isn't the undercurrent anymore. Yet, when I measure the girls against others their age, clearly prematurity exists - possibly in the form of a tidal wave.

"New Normal," has been my theme for the last 18 months. I think we (our family) has done a decent job at adapting to our situation. My question is, "Will all this ever be a thing of the past?" Or, will we just become so accustomed to living life behind the 8 ball that we no longer notice our lives don't parallel the lives of our neighbors and friends?

I remember sitting in the NICU just wishing the first 18 months to soar by. I wanted answers and most doctors seemed to think the answers would come at this year and a half milestone. Well, the months did soar by but the answers haven't been found. When do they come? I am tired of drifting the sea of prematurity! I am ready for someone to tell me where the ceiling is or if the sky really is the limit in terms of the girls' development.

My Latest Favorite

Not perfect but as close as I am ever going to get when trying to take a picture of the two of them. It is almost easier with three because Savannah can HOLD them down!!