Potty Trained

Since I haven't gotten around to posting Lila Grace's big milestone, I will slip it in here. I want to at least document it so I can look back and know how young she was when she gave up the diapers. I am sure I will turn into every other grandparent out there and have a selective memory, meaning only good ones that are a bit inflated. When Lila Grace comes to me frustrated about potty training her own children, I can look back here and tell her that it took three tries and that the third one was successful at 2.5 years old - 2 years 9 months to be exact.

I posted previously about trying to train Lila and never mentioned that after April's attempt, she remained in Pull-ups. Not my intention but just how things worked out. She would go to the potty here and there but the Pull-up was always wet. It managed to get drier and drier over time and Lila started making quick pit stops on the potty. This encouraged me to toss the Pull-ups and break out the big girl panties for good.

Surprisingly. . . Lila went one full week without an accident. She did mark the end of that week in a crying fit while in Time Out. Who knew she was crying because she had to go potty and not that she was generally angry. She peed on the floor but was really upset by it and now knows she can sneak to the potty if need be, even when in Time Out.

So there you have it, potty trained and accident free before three. Not bad for a 1 pound 15 ounce baby. She only marginally lagged behind Savannah. I must note that we are still using the diaper when sleeping. I have no desire to change sheets unnecessarily. It hasn't instilled any sort of "diaper confusion" and, like sippy cups, are a form of mess prevention that I plan to use for a VERY long time.

I sigh in exhaustion when thinking about doing this all over again. Adeline. . . your turn.

People Magazine and Micro Preemies

Adeline Belle 2 days old

I am going to try and make this short and to the point. I could go on and on.

Recently, People Magazine spotlighted six micro preemies. It was an attempt to inspire. In the preemie community, it infuriated. Unfortunately, this article portrays the micro preemie road as pretty uneventful. A stay in the NICU, a few steam baths in the tub and all is well. We, who raise these micro preemies beg to differ. The statistics quoted are taken from a cohort of surviving micros in the 80's and state how nearly 90% finished high school and more than half went on to college. The article failed to mention how many didn't make it out of the NICU. In the 80's only the strongest micro preemies would survive. I am positive the statistics would have been much more grim had they included the percentage of babies that were never brought home.

This easily segways to the fact that more babies are surviving with the progression of science and technology. Some of these babies would have not survived in the 80's and most likely suffer from a disablility today. If these same babies have escaped a diagnosis, they are certainly traveling with Adeline on her "not so smooth road" of prematurity.

I think that People Magazine had good intentions but covering a topic such as prematurity/micro prematurity isn't something that can be done in a brief article. Yes, I want to hear stories of hope. I want to hear them but don't necessarily think that they need to shower down on society. I scoured the Internet for stories similar to that of my babies in order to find hope and finding these six grown preemies would have lifted my spirits. However, feeding these slightly skewed stories to society only undermines the road of my girls. Most micro preemies don't live a normal life - plain and simple. Being born under two pounds isn't easy, the NICU isn't a mere hospitalization and steam baths don't fix chronic lung disease.

Possibly spotlighting one micro preemie and their very precarious road in the NICU and thereafter could have been a better way to go. This might be the way to get society to understand that babies like mine aren't assumed to live and most certainly are not expected to live a normal life. The odds are stacks against a micro preemie, not for a micro like People Magazine portrayed.

Click here for the article

A Day at Sesame Place

Last month, our girls were treated to a trip to Sesame Place, compliments of the Variety Charity. This charity reaches out to families that have children with disabilities or delays. I can't say enough about Variety. I love how they encompass the entire family for events like these. It isn't just the child that is living with the disability or delay, it is the entire family that lives it. Although you would never hear Savannah complain, I am sure the countless hours of therapy and doctor appointments that have left her to entertain herself in the background isn't her idea of a good time. Like I say in my blogs header, the twins have transformed my family. We are living a completely different life with altered priorities than we did prior to the twins' arrival. Variety has given us the opportunity to give back to our children - all three - for their time, effort and perseverance.

I put together a video that sums up the trip. It was our best trip yet. The weather was super hot for April and the girls were pushing through their nap time. It didn't seem to matter. We all had a fabulous time and kept going strong for five plus hours.

My favorite two moments will always be something I carry in my heart. When we went to see Elmo, Savannah and Lila couldn't wait to get up close and personal. Adeline wanted so badly to hug Elmo but the size, unfamiliar territory and crazy red fur served as a large obstacle. You can see in the video where she "hearts over matter" and leans in for a hug. The second heartwarming moment was watching Lila Grace delight in the parade. She jumped, yelled and pointed at every character. If I wasn't holding her back she was darting out onto the parade route. When Ernie came into sight she could barely contain herself. Luckily, a parade coordinator was standing next to us and flagged her as a child Ernie should visit. The professional photographers were aimed Lila's way as she was exhibiting the magic of Sesame Place.

Enjoy

Too Much Therapy??

Not only do the twins live a therapeutic lifestyle, their big sister does as well. Although she doesn't partake in the therapy, she is listening. Later the therapy manifests itself in various ways. Savannah breaks down directions like that of the therapists, pauses to say, "Eyes, Adeline.", and often is thinking of ways to reinforce what the girls are learning. Recently, Savannah created this "learning page." Double click on the image to see the details.

It says. . .

Sing the ABC for me

Is this a tree?

Is this a ball or an egg

All of course written using inventive spelling.

I'm a Mother to a School Age Kid

Where did the time go? I still want my sweet Savannah all to myself but instead have to share here with the school district in September. This has been a rough week for Savannah as the transition finally sunk in. Many times she would break down in tears saying, "I'm going to miss my teachers." " Me too," is what I was thinking.

Savannah was lucky to have a wonderful Brandywine experience with the perfect teachers and classmates. Our choice, to hold her out of Kindergarten last year, paid off. She has blossomed, broken out of her shell and is becoming a kind, compassionate (already had those two qualities in the bag) and confident girl. I couldn't be more proud of who Savannah has become.

I will miss dropping Savannah off at Preschool everyday, chatting with her teachers and watching her interact with the other children. I remember her first day of school. I was so worried she would cry but she didn't. She was so brave and walked right in (she saved her crying for a later date). This, of course, transpired while the twins were in the NICU. It is baffling that I will drop Lila Grace there next year. I guess it is a full circle experience.

Today was Savannah's last day. A big day it was.

We curled

She passed out programs

She sang

I cried

I tried to keep Lila's stage presence to minimum but she finally snuck up to her sister


She graduated

We posed

And then we were off to Sesame Place (without a camera this time in order to just enjoy the girls and not make them pose every two seconds).

We ended the day with neighbors and a mini celebration for our big girl.

Mini Golf

Savannah's end of the year get together was at a miniture golf course. I was dreading it because I had to bring the twins. I was sure the water and other golfer's balls would be a disaster. Surprisingly, the twins were on their best behavior. They simulated into Savannah's class, walked in line and listened to directions. Soon we were golfing. Funny that this was Savannah's event and I spent very little time with her. I was with the twins on our own hole most of the time.

Lila prooved to have some talent, albeit from her knees. She would sit the ball two feet away, kneel and then hit it in the hole. She made it quite frequently. Adeline tried but usually hit it too hard if even hitting it at all. She was soon distracted by the water and was madly throwing her ball in the ponds whenever out of my eye sight. She would toss it, look at me with a huge smile and give me her fake laugh. I would then fish out the ball with the net to only do it all over again two minutes later.

Savannah was reported to be a very serious golfer. Surprise surprise. . . does she do anything half heartedly? She was very proud of her performance and had to take me back to where she hit the ball up a steep hill.

After two and a half hours of golf we were off to a park for lunch with friends. The girls held up really well. We were outside for five and a half hours today with no breakdowns. The girls enjoyed the fun in the sun. I have to imagine they are going to sleep their life away for this nap as they were go go go the entire time. Can you tell how happy we are to be outside again after a very long winter?!

The favorite hole was a when the ball went in a tube and magically appeared below.

A New Friend

While I should be blogging about our transition from Early Intervention to IU or my thoughts on People Magazine and their veiw of Micro Preemies, I am just too tired. I guess I will share a couple of quick flicks of my girls' new friend instead.

We attended a get together across the street and my "deathly afraid of dog girls" seemed to take to little ol' Shaggy. Adeline, of all people, started the friendship. The girl who doesn't like animals (freaked out by frogs and turtles that have been brought into her preschool classroom) decided to play ball with Shaggy. This surprised me on many levels, primarily because Shaggy is jumpy and all over the place. I am also astounded she picked up a furry, wet tennis ball. Definitely a sensory no-no in Adeline's book.



You can see Adeline fight her desire to step on the grass to get the ball in this video. Eventually, Shaggy is the one to give in. Please disregard the clinging of beer bottles in the background.


On a completely different note, Savannah had a Letter People Parade at school. School functions are always a nightmare for me because the girls want to run wild or take part. Lila Grace, to no one's surprise, hopped right in the parade with her Nana (Savannah's nick name in this house). She was pretty cute.

Savannah chose Mrs. W. I was a bit confused at first because I figured Savannah would want to be Mrs. S. She said she chose Mrs. W because she seemed like a calm and quite character. I guess Mrs. S leaned toward a super hero and that put Savannah off. Yep, she is my quiet and calm girl. I thought her Mrs. W costume was quite fetching. (we were working off a previously designed character. Orange shirts with a big W was all Savannah let me do because she wanted to look like the real Mrs. W. Of course I had other plans but chose to submit.)

Preschool is Over for the Twins

Sniff, Sniff. . . That is pretty much how I sum it up. These past five months have been developmentally priceless for the girls. Preschool has opened up their world to the power of peers. Peer pressure is an excellent thing at this age. I know, when they get older I will want them to revert back to not caring what everyone else does.

Lila Grace and Adeline were allowed to start their "schooling" with two of the best teachers I know. It was a risk for these teachers to welcome my girls into their small and quiet class. My girls were too young and much more delayed which, in a teacher's mind, means more work. Mrs. Stueve and Mrs. Feinstein graciously accepted that challenge and I can't thank them enough. They worked tirelessly with Adeline and her sensory issues and, as previously posted, she now allows her people to paint her feet. Since the girls started half way through the year, they were very behind on the year long ABC book the class was making. Not a problem. The girls were given the time to do each letter and its corresponding activity. I couldn't be happier because this ABC book is fantastic. I can't believe I was presented a binder with photographs and 26 hands on projects.

It is hard to say goodbye to something this wonderful. The teachers and classmates were perfect for my girls. In Adeline's ABC book there was a picture of one of the boys using a toy curling iron in Adeline's hair (double click the picture below). This tells me how much she likes being at school and how much she adores her classmates. Adeline won't let me touch her hair without screaming. The girls run down the hallway when we enter the building and Adeline greets everyone with a huge smile. I will miss the routine and my "break" but most of all I will miss these wonderful experiences my girls have had.

I wanted to include the shirt the girls made for me at preschool - unfortunately I'm wearing it right now so excuse the photo. Who wouldn't want this for a mother's day gift? Another example of how wonderful their teachers are.

Hippotherapy

Adeline has continued with her once a week Hippotherapy. She receives speech while on the horse. At first, I wasn't sure we were going to get to the "speech part" as she was so overwhelmed by the sensory experience. The helmet, the open space, the horse hair, the horse in general, the movement, and straw are just a few of the things that were taxing for Adeline's sensory self.

Fast forward six months. . . Adeline is climbing on the horse like a big girl, with her helmet on I might add. She pats the horse while talking to it. Miss Heather (SLP) has her sit in all different positions which Adeline is happy to do. Just being on the horse is tiring because is it a work out on her weak core. You wouldn't know it thought because Adeline powers through with her award winning smile and willingness. She talks and talks on the horse. Adeline focuses and performs! There is something about the motion of the horse that helps Adeline organize and not give into every distraction around her. I am very pleased with her progress.


Each session is ended with a treat for the horse. The rider is to fill a bucket with straw and feed it to the horse. You can imagine how Adeline liked this in the beginning. She wouldn't touch it or have anything to do with being "below" the horse. Now, she fills it up (watch her mind over matter touching the straw in the video. You can almost feel the negative sensations in her hands when she pats it down) and walks it over to the horse. When done, she places the bucket back where it belongs.

All of these activities appear to be fun and exciting and they are for most typical children. However, for Adeline, they are mini hurdles in her very long race of growing up. I am so proud of her for powering through and making the tremendous progress that she has. Just today, her preschool teachers couldn't tell me enough about how Adeline was talking and singing in class. Things are finally coming together for the Belle.

Mother's Day

I had a wonderful day with the girls; one without plans!! I woke up to homemade gifts, painted shirts and lots of loves. Savannah packed me a "Mother's Day Tea" for my relaxed time (not sure when that falls into my day but. . .) complete with tea, apple, muffin and chapter book about littering - written by Savannah. We headed out to the park where I was able to get a run in while the girls played. We all came home and we ALL took a nap. Dinner was oatmeal which was easy, smooth and pleasant - no fussing or refusing. A pretty fantastic day if you ask me.

My only request for the day was some pictures with my girls. I got exactly what I wanted. I really love these girls.

Hitting a Wall

As much as I think taking care of three young children is a pretty doable task, my heart tell me different. My brain tells me that all of the neighbors don't look like they have their feathers in a ruffle which only makes me feel worse. My heart is full of frustration and "Mother's Guilt." I think I have hit my wall.

Each and every day I feel as though my kids push me over the edge. The breaking point comes at 8:30 a.m. instead of 8:30 p.m. The crying and whining is constant. Never is there peace unless I am holding someone. I just need quite and to not be touched during the quite. That is not possible. All of my girls want on my lap every second of every day. I can't make lunch without everyone falling apart (well not everyone, Savannah is still pretty much perfection) and forget dinner.

It is a just plain survival which isn't a lot of fun. I am sucked dry of patience and feel as though the twins should be off and playing on their own, giving me space. Instead they are crying or whining my name for help, or because they want up - again being held. While one stands at the door hitting and it and crying because we just came in from the outdoors, the other is screaming to be held or to have something she knows she can't. It would be fine if this happened two or three times a day but it happems so much that I feel there is little room for positive interaction.

After a really hard week - my week is somewhat over because Daddy will be home tomorrow, I am desperately searching for ways to make these girls the light of my day and not the end of my rope.

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.")