Keeping it Interesting

Just when I become concerned that there is truly a lung function issue going on, Lila Grace wakes up screaming mad about the Pulse Ox beeping. The probe had come off of her foot. I picked her up and rocked her and quickly she was off of my lap and coloring with Savannah. The fever was gone, the appetite was back and Lila was much like her old self. We played outside after dinner and Lila was running barefoot through foot tall, wet and yucky grass. She quickly found where the water runs off of our lot and was running though the mud. That confirms it, she's back!

Don't ask me what it was, how she got it or why it left. Maybe it was leftovers from the hole in the wall we visited for Cinco De Mayo. Possibly it is Lila's body telling her that chips and a bowl of salsa is not a "dinner." Who knows. . . I am just happy my baby girl is back and I can go spinning in the morning!

Trying out ponytails for the first time yesterday

You've Got To Be Kidding Me

We woke up this morning just as any other morning. I dropped Savannah at school, put the girls in babysitting while I worked out and raced back home for Lila's speech therapy. Lila was fussy but when isn't she lately. Lila did fine for Miss Kathy. Next, we went to pick Savannah up from school. I randomly added a neighbor's kid to mix and headed out to the mall. Glutton for punishment, I know. I was in search of a swimsuit for the big girl. Lila was still fussy. We ate lunch, everyone but Lila and played on the playground. I had to get on Lila pretty harshly at points because her behavior was awful. I gave Lila a good snuggle before leaving the mall because she seemed like she could use some loves. Next, we ran to the grocery store and that is when I first noticed it.

Lila was limp, laying on me and clearly not happy. She wasn't fussy but her look said it all. Coming out of the store, I notice she was shivering, a lot. I buckled her in and that is when I saw the dusky lips and hands. "Dusky" is one of those NICU words that is forever a part of your "negative vocabulary." I was sure I was not seeing her skin tone correctly. I proceeded to pick up a prescription at Rite Aide when I looked in the rear view mirror. Adeline was nice and pink and Lila was dusky and shaking.

I raced home as fast as I could knowing that the best thing I could do was hook her up to the Pulse Ox. Thank God for that little machine. I put the probe around Lila's toe (she is limp in the middle of the floor at this point) and couldn't get it to work. It has been so LONG since I have had to use the Pulse Ox that I couldn't' remember where I kept the additional probes. I was ready to call 911 because I was sure there was something terribly wrong. Oh, did I mention a 103 fever? I found the extra probe and strapped in on Lila's toe and there it was, 100! I felt so relieved. Lila Grace ALWAYS sats 100. Adeline couldn't if her life depended on it. I gave Lila Tylenol watched her drift off on her bedroom floor and took some Tylenol myself. I was so relieved that I wasn't in an ambulance with my little girl.

I still don't have a lot of clarity about our situation. Lila's fever went up with Tylenol, the shivering has stopped, there is clearly pain in her eyes or a headache of sorts and her sats have drop while her heart rate has increased.

Yep, that is a saturation of 94% and a heart rate in the 130's

Trigger

I am rarely brought back to the NICU as it seems like a lifetime ago. However, every now and again something will trigger my memories and I feel like I am living it all over again. You would think that it would be all of the stories I read about preemies, or surgeries; at least something with substance. Today, it was a box of clothes. Not the twins' clothes, Savannah's. I was sorting through all of her old clothes in anticipation of reusing them when I stumbled up the the 3t collection. I suddenly remembered certain outfits that Savannah wore into the NICU, my obsession with her being dressed beautifully and perfectly and the events that took place in the certain outfits while her sisters were still in the hospital.

What is more noticeable is the amount of clothes Savannah had in her third year of life. It was ridiculous. As materialistic as it sounds, I bought tons of very cute outfits so that I could dress Savannah in the best way I knew possible. She was unbelievably cute in her clothes and, yes, most people commented on them. What people didn't know was that I was over compensating for what I thought would never be for the twins. I never thought that I would be able to dress them in cute outfits and have people notice. I figured that people would be distracted by their disabilities, possibly a wheelchair or funny gait. I never thought they would be pretty (I previously belabored this point) and thought that my one chance to have the cute little girl that everyone dotes on was then and now. Savannah was my chance at cute, perfect and fulfilling. I know, it sounds harsh but you can't judge until you see what I saw in that NICU. I was convinced that I was going to be more of a nurse than a mother to the twins. I never assumed that they would know what love is or express happiness. Therefore, I showered Savannah with gifts and clothes. I was desperately trying to fill a tremendous void in my heart. Thankfully it has been filled but in much more meaningful ways.

Progress at Preschool

Adeline has been in preschool for five months now. She initially went just one day a week but has been increased to two mornings a week. She has always enjoyed her time there. However, doing crafts has been very hard for her. Initially, she would bring home perfect projects as she just sat beside the teacher while the teacher did her project for her. Every now and then there would be a few scribbles on the paper but gluing and painting was just not going to happen.

Recently, things have changed. She loves to glue, or should I say rub her fingers on the glue stick. She colors more and even allows the teachers to paint her hands. In December, Alex and I had to go into the classroom and coerce Adeline to let us paint her hand for the parent gift the teachers were having the kids make.

Last week, I dropped both Lila and Adeline off at school and the teachers mentioned they were going to paint feet. For Miss Grace this is a dream come true. If not supervised, she would strip naked and paint her body! For Adeline, I was a bit apprehensive. Adeline doesn't allow me to rub her feet. She can't stand it when I cut her toenails because I have a her entire foot in my hand.

So. . . you can imagine my surprise when Adeline's teacher told me that while painting Lila's foot, Adeline came over and said, "My turn." She proceeded to sit in the chair, let the teachers remove her shoes and orthotics. Adeline actually lifted her foot for the teacher to paint. While sitting quite still for the process, Adeline said, "Pink, pink." It was pink paint.

I know the above doesn't translate very well but it is a remarkable step for the Belle. She has a lot of baggage when it comes to sensory issues and it holds her back in many situations. Allowing her teachers to paint her foot. . . That is rather unbelievable. I was thrilled that they took pictures because I certainly didn't picture a quiet and willing Adeline sitting all by herself while someone holds and paints her foot.

There are some teachers in this world that are priceless and Adeline and Lila have two of them!!

Heard. . .

Lila needs to get a bigger brain so she can start thinking about other people and their feelings!

I care about everybody. My heart is so big it goes down to my belly button.

Everyone thinks Nature (science class at preschool) is boring. I don't because I like to learn things. I told Katie that I liked it. I was being brave.

Mommy I know how you feel about all of this mess. It will be okay. I know mommy, I know.

Miss Grace while at her soccer class pulls up her shirt, points to her belly button and says. . .

This is a ball too Mommy. I see a ball Mommy. (poor girl has quite the "outtie.")

Her First Ride Solo

My heart swells with pride!!


The first time daddy let go. . .


Showing some confidence

March for Babies 2009

March for Babies was another wonderful experience. So blessed we are.

Alex and I packed up the girls early and headed out ahead of the crowd for a 5 mile run. We managed to run 4.5 miles with a few stops here and there. The girls were extremely good in their strollers including Savannah who was happy to sit in her old jogger.

I was happy to bump into familiar faces such as Savannah's old preschool teacher who was sadly walking for her friend who lost both twins born at 25 weeks. We saw another friend of mine who has one year old twins, one of which spent a week or two in the NICU. Finally, we saw the girls' first Early Intervention therapist who left us a year ago to have a baby. She was surprised to see the girls so big and active. It was a full circle moment.

There were many unfamiliar faces as well. Groups of people with identical shirts that tell about their "angel." It is wonderful to see the parents uplifted in support but hard to imagine what our life would be like had it been us. One couple struck me as we ran. They headed out early as well. They were young and without a child. Every time I saw them they were holding hands and quiet. I have to imagine that they were walking in honor of their child who never made it home from the NICU.

How did we get so lucky? We have two healthy and vivacious preemies. We also have wonderful friends and family who supported us in donations for this year's walk. A heartfelt thank you goes out to all of you who participated with us in spirit!