That Other Shoe Just Might Be Dropping

In the name of honestly documenting my girls' journey, I feel I must post the following.

Back in December when we went to the developmental follow-up appointment, Dr. Bernbaum suggested Adeline see a geneticist. Her reasoning - she has dismorphic features, is developmentally delayed, doesn't look like her parents (I beg to differ) and has low tone. Well getting into any genetics doc is a long and drawn out wait.

Our appointment was yesterday. We saw Dr. Gripp out of duPont and she was wonderful. Adeline was at her best - smiling, laughing and in general wooing everyone with her fabulous personality. Lila Grace also came and showed off her strength and abilities as she used just about everything in the exam room as a climbing apparatus.

Dr. Gripp spent a lot of time measuring Adeline's physical features, looking at both Alex and I and just getting a feel for the twins. She didn't immediately see any conclusive evidence but one syndrome seemed somewhat consistent with Adeline's physical and physiological characteristics. Adeline has a wide nose, a longer upper lip, puffiness under the eyes, is developmentally delayed, has suffered from cardiac issues, and has feeding problems to name a few. Although Dr. Gripp was reluctant to "clinically" diagnose Adeline, she is running a FISH test to determine whether or not Miss Belle has Williams Syndrome.

Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems. Most notably, children with WS are cognitively impaired and most likely will not live independently as adults. I am by no means an expert on this syndrome and don't claim to understand what it would be like to raise a child with WS. You can read more about it at williams-syndrome.org.

In order to not belabor the obvious, we are struggling to come to terms with the possibility of our little Belle not leading a normals life. In our heart of hearts we are still hopeful that the test will come back negative. It will be a LONG wait (2-4 weeks).

During this time I am sure my emotions will ebb and flow. Ironically, it is the source of this worry that helps me regain composure. Adeline's smile helps me lose myself in the moment which is what I need.

This afternoon I was extremely tired. I had stayed up late reading blogs by parents raising children with WS. Lila Grace and Savannah were asleep so I was able to get some one on one time with Adeline. After some fun, I put her down for a nap in my room (consequence of the twins thinking nap time is playtime) and headed down stairs to the computer. After giving up in my search for "answers," I went upstairs to lay in my bed and listen to my little girl laugh and babble (obviously not sleeping). She was trying out her "S" sound for the first time and it was really cute. I am confident that I dozed off with a smile on my face. God works in mysterious ways!!

I love her completely - this will never change!!!

Happy Valentine's Day

Yes, Daddy made it home . . . after fighting a dead battery and finally taking the train. It is nice to be a family unit again.

More importantly, Adeline passed her hearing test!!! She did so well in comparison to her last tests that they ran it twice. Two times tested, two times passed. It is so nice to let this door close. I can finally put my hearing worries at ease. Good job Miss Belle!! The best part about the test was that I was able to spend one on one time with my little girl. Granted, it was in a doctor's office but it was still quality Adeline time.

Well, Valentine's day has come and gone. Savannah was beyond excited. She has been counting down the days for at least the past three weeks, if not more. We are all sugared out and she is already asking about the holiday that comes next. I put some pictures together for a little V-day clip. The girls are really starting to look like toddlers!!!

7 Hours. . .

But who's counting? Actually, we all are. It will be nice to have daddy home again. Unfortunately, we just experienced an ice storm which will more than likely delay his flight until who knows how late into tomorrow. Melt . . . Melt . . .Melt . . .

After a cold start to the morning we were able to take in some pretty snowfall. I thought it was funny that the girls were so mesmerized by the flakes. They just zoned in and looked completely lethargic sitting in their highchairs. Of course, that wasn't the case once I let them out. There was no shortage of running, screaming and fussing today. I guess that comes with the territory. Whenever I am housebound, we are all more than likely cranky!!

Here is a little shot of the girls watching the snow. Not great videography but I decided to post it. Maybe the girls can help us to remember to slow down and watch the snow. It is, after all, a beautiful sight if you are aren't too focused on airport delays.




On a more pragmatic note, Adeline goes for a hearing test tomorrow. We are hopeful that this will close a long chapter of concerns regarding her hearing. Both girls had fluid in their ears which prevented them from passing their hearing screens but Adeline was noticeably worse than Lila. After tubes last fall, we have seen remarkable improvement in Adeline's response to sound. That being said, she remained borderline for hearing loss the last time she was screened. There is no doubt that she can hear. I just want to walk away from her appointment knowing that her hearing issues have resolved.

A hairstyle?

Couldn't let this go undocumented. I think Adeline may be starting to sport a hairstyle. This unruly hair didn't look half bad left out of the ponytail

Is it finally happening?

Are my girls really starting to "play" with one another? I continue to ask my mommy friends who have three kids, "How do you get them to play together and without being the facilitator?" Well, I am not sure you do.

I have been told it emerges over time and I am starting to believe.

Just the other night, Savannah points out, "Look Mommy, all three girls are playing Legos." And by golly, they were!! Of course, five minutes later Savannah was mad at Lila for tearing her tower down and Adeline was getting inched out of space but. . . five minutes is a start!!

Today, Adeline woke up with a cough and Lila thought it was great fun to mimic her. This, in turn, made Adeline laugh which sent Lila over the top with laughter.

Savannah and Lila have taken to chasing one another and find it very entertaining. Thank goodness Lila is tough because she can take a beating from time to time. She slips and falls, runs into walls and is often pinned down by her sister during her hysterical attempt to get away.

Yes, I am happy to have "my girls," as one friend always puts it. It may be harder, more hectic and frustrating at times but I am beginning to see how three is a good number.

As stated by my good friend Becky, "The greatest gift you can give your children is a sibling."

I am finally a believer!!!

A glimpse of what the future holds. . .

Overworked and Under-napped

After a long morning without a nap followed by a session of occupational therapy, Adeline passed out on the family room floor. I had to take a picture because this something Savannah and Lila Grace would NEVER do. Adeline, on the other hand, will take her nap where ever she is.

The poor baby didn't even make it through her bottle!

A Trip to Costco/Memory Lane

A few evenings ago, I decided to pack the girls up and head out to Costco. It sounded much more appealing than listening to the whines and fusses of the nighttime "witching hour." On our way there, Savannah asked, "Mommy do you remember when you had to sit in a wheelchair at Costco?" At first, I wasn't quite sure what she was talking about but suddenly it came to me, along with that reminiscent pit in my stomach.

And so the story goes. . .

After being discharged just over 48 hours after having the girls, I was a lost soul. Driving home without the babies, leaving them fighting for life, wondering how we were going to do this for months - not days, and finally, trying to figure out how to fit back into my old life left me overwhelmed. My first line of defense - outside of lying in bed and crying all day- was pretending it was all just a bad dream. "I am going to regain NORMALCY!" And like any faithful Washingtonian would do, I headed to Costco.

I head into Costco, thinking that I am really in the state of mind to browse. Of course, five minutes later I am weak in my feet, dizzy and dripping with sweat. In the name of "NORMALCY" I tell Alex to push me in a wheelchair and we will continue our outing. I know, it all sounds far from normal but in my wacky state of mind I thought it was.

Those days were surreal, one moment I was fine and the next moment I had such a severe pit in my stomach that I had to sit down in order to not pass out. It took a good two weeks for me to stand in the NICU while being debriefed by a doc or nurse.

So what is my point???

Looking back to that day while, at the same time, driving all three of my girls to Costco, I count my blessings. Never in my wildest dreams did I think that my girls would be hanging out in the backseat while Mommy drives them to Costco when just 17 months prior, the thought of my "girls" made weak on my feet.

Just when I start to fed up with typical toddler fussiness, I am given a bit of perspective by my four year old. God works in mysterious ways!