Her name is Emma

Tim and I sat down earlier this week and embarked on the bittersweet task of choosing a name for our precious little girl. We wanted to be able to give her an identity,not just a tragic diagnosis. This has been something we have been talking about and considering for a while. At first I was reluctant to allow myself to grieve for a baby that I will probably never get to meet, especially since I was expecting to lose her much earlier than this stage in the pregnancy. Tim was a little reluctant to name her because he didn't want us to attach a sense of false hope in moving forward with naming, as couples usually do in normal pregnancies. In the end, we have decided to start trying to build her identity as our daughter rather than our medical tragedy. We both feel a greater sense of peace and propriety in doing this.

So, our daughter's name is Emma Grace Decker. Emma means "Embracing All" and Grace means (predictably) "Grace." We literally went through an entire thick book of baby girl names before deciding on this one. We wanted to pick the right name to attach some meaning to our experience with her, and a name that means "embracing all" sort of sums it up. Despite the fact that Emma has some very serious medical problems that will likely take her away from us, we have resolved to embrace her for the time that we have. She is our daughter no matter what the outcome. Though we cannot really see a grander purpose for our grief right now, she still holds a very precious place in our hearts. We named her in order to recognize the love that we feel for her despite the circumstances.

There is no medical news or updates on Emma to share right now. I have been in twice this week to check her heartbeat, and it is still completely normal. I understand that her condition will progressively worsen, and that this process will potentially take a while. It still baffles me how her little heart can continue to beat so strongly and so normally despite the challenges that are created by her edema. She must have a very strong, resilient little heart...one more little fact about her identity that we will carry with us.

On a lighter note- news from the Decker House:

Little Timmy is continuing to grow and learn. He has recovered from his little bug and is back in action. This week he has started drinking from a normal adult cup with no lid. We're still nervous about this, so we only let him practice at the table with a bib, but he does a fairly good job and avoiding spills.

Tim has asked me to share the final results of his "Quest for the Perfect Pancake." So, we have located Krusteaz pancake mix, both plain and blueberry flavored (thanks Mom and Dad Barkley!). A summary of Tim's attempts:

Atempt 1: Plain Krusteaz pancakes- fluffy, but disappointed with the level of browning
Attempt 2: Krusteaz pancakes cooked in butter- much better, but not on par with Stormont Vail
Attempt 3: Ricotta pancakes from scratch- YUCK! no fluffiness
Attempt 4: blueberry Krusteaz, baked by Kim due to Tim's illness- good, but blueberries not fresh enough
Attempt 5: Bisquick pancakes cooked in butter- good, less favor than Krusteaz

So, after the past 5 weeks' worth of attempts, Tim has come to an epiphany: IT'S THE SYRUP! He had me re-appropriate several syrup packs from the dining hall in our latest visit to Stormont Vail. This morning he tried one of the syrup packs and made the determination that the crux of the perfect pancake lies in the syrup, not the batter. So, if you ever run across Heinz pancake syrup in the grocery store, know that you have discovered the Holy Grail of pancakes. And, for the record, the best combination possible is plain Krusteaz pancakes, prepared on the griddle with butter, and topped with Heinz syrup. Quest Complete.

Final Results and Check-Up

This week we finally got the final results from the amniocentesis...Turner's Syndrome is definitely confirmed. We were not surprised by the results, though we are definitely heartbroken at the prognosis. Tim and I have been through and endless week of appointments, but the most significant was our visit to the specialist in Topeka. We knew the day was off to a bad start when we were sorely disappointed by the quality of our beloved pancakes in the Dining Facility. It appears that we got the cakes at the bottom of the pile that had been under a heating lamp too long...unsatisfactory. At any rate, we got absolutely no positive news at all during our appointment. The ultrasound was heartbreaking....the hygroma has gotten very large and is now running down the baby's back and has entered the chest cavity. The size of the hygroma has limited the space available for the baby and has pushed her into a fairly unnatural-looking position. The doctor explains that the position was the most comfortable for the baby, but it still broke my heart to see her. The most significant finding is that there is significant pleural effusion, which is fluid build-up in the lungs. This is the precursor to the heart failure that the doctor has been predicting for a while now. Looking at the ultrasound made it really difficult to choke back tears. We have decided not to see Dr. Evans again for another four weeks. We do not have any more diagnostic needs and there are no treatment options, so we do not really need to assistance of a specialist.

Thank you all very much for your words of love and support. The one positive that I can draw from this experience is an overwhelming sense of support from friends and loved ones. Thank you very much.

In other news, Timmy continues to grow and keep us on our toes every day. He's so cute and fun as he grows and learns. Sometimes we look over at him and realize that he is very obviously imitating something that he has seen one of us do. We can't stifle our giggles...he's a funny baby. Unfortunately, this week we have been plagued with the tummy-bug. Timmy was "kicked out" of daycare on Thursday and was sick through Friday. Tim and I took turns staying with him. As much as I wish I could take way the illness, I will have to admit that it was really nice to be able to stay home and rest with him a little bit. I have felt physically better in the last few days than I have felt the entire time I have been pregnant. Unfortunately, Tim got the "bug" today and has spent the entire day on the couch. What a weekend!

Amnio Results and Valentine's Day

We have not gotten our full amniocentesis results, but we did get the preliminary results on Tuesday. It was a nerve-wracking day because we were supposed to get the results in the morning, but LTC Franklin played phone tag with the hospital in Topeka until about noon. When I finally got my results, it caused me to miss a meeting, which I got in deep trouble for later on in the day. It is pretty frustrating to be going through all of this and then have work troubles piled on top. Anyway...

The baby has a condition called Turner's Syndrome, which is a chromosomal abnormality with the X Chromosome. The health effects are significantly less tragic as many of the other chromosomal abnormalities, and Tim and I have decided that we can manage the potential health effects, should we be blessed with a little girl at the end of this nine months. However, the sad news is that most Turner's babies will end in miscarriage. We initially hard the figure that 99% would end in miscarriage, but the genetic counselor told us that the latest studies puts the miscarriage rate closer to 75%. Of those, 60% will miscarry in the first or second trimester, and roughly 15% will miscarry in the THIRD trimester. Tim and I have made the decision to take what God hands us (not tat we had many options) but I am really concerned about a third trimester miscarriage. I am already in my second trimester, and the baby has a strong, normal heartbeat. However, we can see on the ultrasounds that the edema is worsening, even after only a few days from the ultrasound in Topeka and the one that LTC Franklin performed on Tuesday. The edema is well into the lungs and the prognosis is not good, regardless of the statistics. What we are planning for right now is a miscarriage sometime in this pregnancy. If we get blessed with the birth of a daughter at the end of this, we will be thrilled, though it does not seem realistic at this point to have that expectation. Oh yeah...and we do definitely have a little girl. This condition only affects females, so we have confirmation.

On a lighter note, we have enjoyed our Valentine's Day thus far. I bought Tim a cake from Baskin Robbins (our weakness lately) and also picked up a little clown cone for Timmy. I have enclosed the pictures of his sugar delight. He doesn't get very many sweets, so Timmy definitely savored every bite of this cone.

A Day at the Pool

We finally got some respite from the bitter, bitter cold that has been plaguing Kansas for the last few weeks. It has been in the 60's for the last few days, which has been a huge blessing. Since it was so nice out today, we decided to venture out of the house and go have some fun. We took Timmy to the (indoor) pool at Fort Riley. We had a blast! Timmy just can't get enough of the water, which is good considering what family he is a part of. Timmy is doing much better at moving his arms and legs and setting the foundations for learning to swim. It also helped that the water wasn't as freezing as it was when we took the swim lessons this past fall.

After some time at the pool, we went next door to the PX for some Baskin Robbins ice cream. To my knowledge, this was Timmy's first ice cream experience. He loved it! After all of the excitement.

Amnio Day

Today was the day I have been anxious about for three weeks. I am finally far enough into my pregnancy to allow for amniocentesis to be performed in order to give us a more concrete diagnosis for the baby's condition. I went in on Monday for a regular ultrasound to detect the baby's heartbeat. The news from that ultrasound was not reassuring. On Monday it appeared that the edema from the cystic hygroma had spread to the chest wall. As of today, the hygroma has almost doubled in size and the edema has spread to the lungs. This is a huge problem because it can constrict the growth and function of the lungs, and eventually contribute to death. The bigger issue is that it appears that the condition is significantly worsening, though the doctor could not give me any predictions on how long the baby might live. He explained that since I am doing most of the work sustaining the baby right now, the baby can survive in utero for a long time, even though it may not have any chance of survival later in the pregnancy. Though a small percentage of cystic hygromas will resolve on their own, the doctor told us today that he had never seen a baby survive with a hygroma of this magnitude. He rather bluntly told us that it is just a matter of time.

So, despite all of the really rough news, Tim and I chose to try to make the best of our gloomy trip to Topeka today. Allow me to relate the "Adventures of Timmy Decker and the Quest for the Perfect Pancake." For those who have spent any amount of time at our house on a weekend, you will know that Tim has an immutable Sunday morning routine of making pancakes. He takes this routine to an art and has been working diligently to try new pancake recipes and perfect his own recipes to make The Perfect Pancake. This has led to a series of interesting combinations for toppings and a few pancake "flops" over the years, but usually he does a fairly good job. Tim also has a routine for how h eats his pancakes, which borders on Obsessive-Compulsive, but his weekly "Pancake Zen" seems to relax him. To each his own.

At any rate, the first time we went to the hospital in Topeka, we had some down time between speaking to specialists. The receptionist suggested that we go to the hospital cafeteria and grab a bite to eat i between appointments. We went downstairs and had a really, really good breakfast. Both of our breakfasts consisted of the largest, fluffiest pancakes I've ever seen. These pancakes have become the stuff of legends over the past few weeks since our visit. Today, we left the house extra early for Topeka so we would have plenty of time to go to the cafeteria and get some more of these heavenly pancakes. Today as we munched on our pancakes, Tim told me how he intended to get the recipe from the cafeteria and wondered if they would give up the secret. All morning we talked about the pancakes, even joking about it through the amnio procedure. The doctor instructed Tim to take me out fora huge lunch to help replenish me after the procedure, but he stated that cafeteria pancakes would always do the trick. Anyway, after the procedure, we went back to the cafeteria, speculating all the way there about what exotic recipe or brand of mix could possibly result in the world's most heavenly pancakes. When we got to the cafeteria, Tim asked to speak to the "pancake chef" and kindly asked for the recipe. The kind lady behind the grill looked at us for a minute (as if you ask--"are you serious?") and broke out in a snicker. "You can get these at Wal-Mart....nothin' special. We just add water. Look..." She held out a bag of Krusteaz pancake mix. The look on Tim's face dropped. He was completely deflated by the idea that his precious pancakes could possibly be the result of your run-of-the-mill pancake mix. So, the secret's out: Krusteaz pancake mix is the way to go for perfecting the art of Sunday morning Pancake Zen. Who knew?