July 26, 2006

Alex and I haven't concluded whether or not to celebrate this day or try to erase it from our memory. Since the latter is impossible, we are called to celebrate or at least recognize the date.

Where to start. . .

Two years ago, after the stress of the first trimester troubles were over and while we were settling into the delightful second trimester (I really mean delightful. . I love being pregnant) I took my mom with me to a routine ultrasound. My pregnancy was high risk and ultrasounds weren't uncommon. What was uncommon was that Alex didn't accompany me. It was the first appointment that he missed.

The tech examined Lila Grace first and she was dancing away. I assumed everything was fine with Adeline when the tech decided to take a "potty break" but when Dr. Carlson came in and proceeded to do the ultrasound without speaking, I knew. I pushed him for answers and he was reluctant to give any. He said that Adeline was measuring half the size of her sister and that her placenta had bled and formed a hematoma. He wouldn't comment on her prognosis but it was clearly grim. I immediately went upstairs for my clinical portion of the visit at which point Dr. Roberts said that there no chance for Adeline's survival. Her blood flow was restricted and would soon reverse. She gave Adeline two weeks to live and mentioned that they wouldn't consider delivering her so early because she would be too small to provide support. She concluded the appointment with, "In reality, she will probably give up the fight in the next couple of days which will make delivery a non-issue."

I was stunned, angry and scared. I continued to search for a way for my little girl to beat the odds but kept coming up empty. Alex finally arrived at the hospital and I collapsed in his arms. I desperately needed him to tell me that they were wrong. We both decided to hang our hopes on a 12 hour fetal diagnosis that was scheduled at Penn in 48 hours. That 48 hours seemed like 48 days. Was Adeline alive? That remained the question for every waking moment over the next 29 days.

After our appointment at Penn we sat at a round table with Doctors and counselors. The concensus was that Adeline had a 5% (a.k.a. no chance) of making it to 24 weeks which would be the first day they could ethically deliver. If by some miracle Adeline did hold on for two weeks, it would mean that Lila Grace would also have to be delivered early, putting her life at risk as well. Could we possibly put Lila Grace at such great risk for the sake of delivering Adeline early? A terrible decision to have to make.

A few days later, we went over the results of the appointment with Dr. Carlson and he told us to go for baby "B" (Lila) and pretend that baby "A" doesn't exist. Hard to hear and poorly delivered but an honest opinion from a doctor that hates to give them.

And so the fight had begun. . . each day laying on my side pushing my fingers into my belly trying to get Adeline to move and give some indication that she was still alive. We were given ultrasounds every 48 hours but that is too long to wait when you know your child is fighting for life and most likely loosing. Each ultrasound indicated poor blood flow, but the predicted flow reversal never appeared! Her amniotic fluid was slowly leaking which was part of the reason she wasn't able to move in the womb. I don't think my heart ever beat as fast as it did during the few seconds it took the tech to locate a heartbeat during each scan. Nor do I think anything has been more emotional for us than the sight of a beating heart when you have prepared yourself not to see one.

I like to say that God held her in the palm of his hand during those 29 days. She shunted every last drop of blood to her brain and held on to life. It was evident by the looks of her on her birthday. Her head was about as big as her body. . .a sign of a baby in distress.

Alex and I still had to grapple with the decision of when to deliver the girls since Adeline was clinging to life, hanging in that miraculous 5% survial category. We finally made the decision to deliver at 28 weeks which would most likely guarantee Lila's survival if she was administered steroids 72 hours in advance. The day of the girls' delivery was the day we were going to set up my admission and begin the steroid course for the anticipated 28 week delivery. Clearly, God knew that Adeline had fought long enough and gave both girls the strength they needed to live in the absence of steroids. Their delivery was the caused by preeclampsia - something that the doctors mistakingly didn't watch. Proof that God works in mysterious ways.

29 days of agony, despair and anger, or 29 days of miraculous strength and perseverance by my little one. It just depends on how you want to look at it. At the time it was the former but two years later I see things through different eyes.

July 26th will always be Adeline's day. She fought a good fight for 29 days and then continued fighting for 125 more in the NICU. She never ceases to amaze me or comfort me. As she approaches two and begins to take on the characteristics of a typical two year old, she still exudes calm and serenity. She makes me smile like no other. How can one be so funny, sweet and full of life considering her calm and peace didn't really start until less than a year ago when she gave up the oxygen? Her road has been long and hard and will continue to be. Adeline continues to raise the bar when it comes to living life to its fullest.

There are no words to express how much I love this little one. She makes me a better person each and every day!!

Miss Belly Belle, Thank YOU!!!

Oh, the Joy of Mealtime

I remember when mealtime was a break. . .at least 10 minutes of quite while Savannah would eat. Not true with preemies! Slowly creeping toward the top of the "issues list" is eating. Being that the girls are both small (barely over 20 pounds) caloric intake is not something I take lightly.

Lila Grace has gone from eating everything to being on an eating hiatus. Then there is the oral motor issues that are greatly affecting her articulation, leaving both mommy and baby very frustrated. Lila's tongue hangs over her bottom teeth, preventing her from producing a variety of consonant sounds. In order to strengthen her mouth and teach her to bring her lips to a closed position, we have started a modified straw program. The only problem is that she hates the straws that I have to cut down so that she only gets 1/2 or so in her mouth. If she is in a mood - and when is she not - she takes the drink and flings it onto the floor. That is after she looks at me just to let me know she is going to do it. I guess she has figured out that it gives her a little more bang for her buck by preparing me for the mess when I can't get there soon enough to prevent it. Just recently she took her smoothie and threw it down the garage steps. One would think this is better than in my house but if you ask my four year old, she will tell you what an issue it has caused. She can no longer come and go without having to penetrate a hoard of flies that "live" on smoothie remnants. Our speech therapist brought a different cup to try that doesn't have a valve and Lila finds it really amusing to watch the milk drip out onto the floor. Last but not least, when she is done eating, she takes the plate (which is usually still full) and tips it over with the announcement, "All Done."

Miss Belle. . .where to start with her eating woes. She just doesn't eat anymore. Thank goodness for Pediasure but something has got to give eventually - right?? We are enrolling her in the Hershey feeding clinic two hours away - oh joy - and have had to keep a food diary over the past three days. To give you an idea of what we are dealing with read on. . .

July 22

8 oz. Pediasure

3 oz. yogurt
2 oz. Pediasure
10 Cheerios

3/4 cup of fruit smoothie
2 sweet potato fries
5 corn puffs

8 oz Pediasure

That is better than she did today. It is incredibly frustrating to have a child that refuses food. YOU can't win, and they ALWAYS win it seems. Even Savannah gets in on the action and says, "Here Mommy, I will just hold her hands down and you can stick it in her mouth really quick." FYI, we aren't force feeding her. I couldn't if I wanted to. I have tried it all, crunchy textures, hiding things in the yogurt, small meals etc. It just doesn't work. Let's hope the people at Hershey can work some magic or this child is going to be walking around with a bottle of Pediasure when she is 10 years old.

Needless to say the ten minutes at meal time that I used to get with Savannah are long gone. Meals are an operation in this house. First I crank the air conditioner because without fail, I am hot and sweaty by the end of it. I make sure everything is on the table and we all sit down at the same exact time. I NEVER get to my food before it is cold and I ALWAYS leave the table a little more cranky than I started.

Not a Good Way to Wake Up

No parent should ever have to walk into their child's room to this. My girls slept later than usual and I had to wake them which is very uncommon. Adeline was asleep on her belly next to a large bloodstain. When I frantically rolled her over, I found her face covered and shirt saturated in blood. I don't know which was more scary, the look of her or the look on my face. Luckily, I didn't scream as my heart dropped to my toes so my sweet little Adeline just sat up and greeted me with her usual morning smile. I guess she suffered a pretty bad bloody nose last night.


As I sit here writing this, Savannah has come in asked me what a sticker says. I read it to her, "All PLAY and no work." She pauses for a long moment and then says, "Well mommy, I am going to put it in your scrapbook (something she has been crafting for me over the past two months) but I want you to know that I am still going to work. . .even though I don't like to. I won't just play."

Sweet sweet girl!

The Beach Adeline Style

I know I have said this before, but I can't emphasize enough how proud I am of the Belle. She was a star on the beach and loved every minute of it. I can't wait to take her back next year!

"That's a whole lotta hair!!"

Those are pretty much the first words I hear when people meet Adeline for the first time. Who would have thought she would have such a tiny body with such a BIG head of hair. She graduated to one ponytail today and I am pleased to report that there is no evidence of the dreaded "preemie head." She had the narrowing at top for quite some time and I always told myself that God blessed her with crazy hair to cover it up. I was quite surprised that after tying all of the curls back,the head didn't look any different than your average kid. . . at least not to her very biased mommy.

Our Weekend at Home!

That's right! We spent our entire Saturday at home and it was fabulous. The weather was dripping hot but that didn't seem to bother the girls. We put them in their swimsuits and out onto the poor man's patio they went. We set up the pool and they kept cool splashing until daddy broke out the playhouse box.

We got the girls a playhouse for their 2nd birthday and decided that since we are going to be in Washington State for the big day, we would put it together early. Much to our girls delight, I might add. Not a second after we pulled the box out onto the driveway was Lila Grace jumping and climbing all over it. Then came the parts - many of them - that needed unloading. Adeline stuck to the pool but the other two were glad to help. Things went slower, much slower, but eventually we had ourselves a lean-two and that was enough for the girls. We finally got the house together during the girls' nap which provided us with hours of fun later in the evening.

After the girls got some play time under their belts, we headed around the corner to see the horses behind our development. Savannah has a sudden love of ponies and asks to see them every time we drive by. They were a big hit, Miss Grace even pet one. Unfortunately, one decided to snort rather loudly which sent all three girls three feet in the air. After that, Adeline was beside herself, Lila was disgruntled and Savannah was torn between wanting to spend time with the horses and her sudden fear of them.

It is amazing how much fun staying at home and hanging with your kids can be. Simple things like watching Adeline drink water for the first time (if you want to call letting it dribble out all over her "drinking") and Lila's new found love of ice tea were moments worth hanging around the house for. We have amazing girls. All three are snuggly, loving and funny in their own little way. May this weekend be a reminder that "home is where it's at."

More From the Beach

Alex left for Dallas with all of my pictures on his hard drive. Now that he is back home they have made their way over to my computer. I can't emphasize enough how important it is to back up your hard drive. We mentioned that we needed a backup for our "backup" and not a day later our external hard drive was dead. Unfortunately, with it went pictures from the last three months (I won't go into why they were on my backup and not on my computer). Let this be a sign. . . back up your computer!!!

Since I have over 1,000 pictures from the beach I am going to have to do some serious weeding. I think I am going to do separate posts for each child.

I am going to start with Miss Grace. She, as mentioned before, had a love hate relationship with the sand. It has become apparent that she has a few sensory issues as well. She can't tolerate anything messy on her body from a drop of yogurt to a grain of sand. She screams until it is wiped away and then calmly says, "All done." That is my youngest, hot and cold.

By the end of the week, she found her beach groove and would play in the water, run around on the sand, and enjoy different pictures Mommmy would draw for her in the sand. When tired, she would find her way back to the stroller and calmly (well not every time) snuggle bunny until she was lulled to sleep by the waves. Quite unusual for her.

Our last night was the 4th and she really enjoyed the fireworks. We could see them up and down the beach. We sat with family while they were lighting their personal fireworks and she giggled as the sparks went flying. I can see her jumping into sparklers next year.

I think next year will be a bit easier on Lila. Hopefully, the sand won't be an issue. I also think that being more stable on her feet will make her more confident which could really limit my chair time. I guess I should be careful what I wish for. The days of napping on the beach are surely gone.

Listening to the ocean in a shell

More from the Oldest

As we were driving home from the Wawa (followed a neighbor down so I could buy milk without dragging three kids out of the car) Savannah had her hand hanging out of the window. We rarely drive with her window down so this was new. She asks

"Why aren't the trees moving - it is windy outside?"

(I wish it was windy. Instead it is a hot, sticky and still.)

My "Crunchy" Daughter

Savannah came into the garage after playing in the yard and handed me a piece of plastic.

"Here Mommy. I found this piece of trash in our yard. . . I am just trying to clean the world."

The beautiful thing is that she said it with sincerity. She believes that one person can make a difference. I wish I had that conviction.

In turn, we used buckets to empty the pool today. Our flowers enjoyed the water and Savannah got satisfaction from not wasting the water.

Measurable Progress!!

I have always wanted to say that I see MEASURABLE progress in my girls. It is easier said than done. Watching your children develop day in and day out muddies the water. Since we were going to be away for 10 days and both Mommy and Daddy were going to be with the girls, I figured we could find away to "measure" progress during our vacation.

Before leaving, Alex and I sat down and made a list of things to work on with both girls. Although there are many areas Lila Grace could improve upon, her list was more general and (I hate to admit it) less focused. Not so measurable! Adeline's, on the other hand, was very specific. It contained the following:

Point to pictures when asked to do so in a book

Use the signs, car and cracker

Wave on command

Follow the commands "Give the _____ to Mommy." Take the ______ to Daddy."

Look at her family members when asked, "Where is Savannah etc."

Follow the command, "Go get Bunny."

Stack four to five blocks


Although the list seems rather simple, Adeline wasn't doing any of the items constantly and most not at all.

After working with her for about 15 to 20 minutes each evening, I am very proud to report that Miss Belle is doing most of the above. She points to pictures in a book and, at times, will isolate her index finger to do so. She isn't always willing to point but I would say that she consistently does it 75% of the time. While reading her favorite book, "Good Night Moon'" she pointed out the red balloon, fire, kitties and star multiple times before her nap today. I have also observed her stacking four blocks (not five and not often). During our evenings together, Adeline would take things to Daddy and then to Mommy. It took direction and encouragement but it is a start. Finally, her signing is what surprised me the most. Within a day or two she was using cracker and car without prompting. She also picked up open and all done. I guess we need to get going with these signs!!

I don't know if measuring her progress is more for me or her. It holds me accountable and gives me hope in the cognition department. I think it gives Adeline more one on one time with her parents which makes her light up. Do I dare say she is most teachable after 9:00 p.m. I believe everyone in this family has the night owl gene except Miss Grace.

Let's hope I continue to follow through with "Mommy therapy sessions." It seems to be much easier when Daddy is around.

Happy 4th of July!!