Monday, January 26, 2009
4502 Velasco Place
Austin, TX 78749
We have been crazy busy packing, loading, traveling, unloading, and unpacking... We are mostly settled in now and are attempting a few minor updates to the house. For now, here's what it looks like from the outside:
More to come...
Wednesday, January 7, 2009
Tuesday, January 6, 2009
For those of you who have followed our story, you may have noticed the running theme of one shattered dream after another. I'm not sure if any of you can relate. I think our story is not exactly the norm.
Fast forward 8 weeks to our 20 week ultrasound, typically an exciting time for new parents. We were happily expecting to see our baby boy, his tiny fingers, toes, hands, feet... Somewhere in the middle of the ultrasound, the doctor appeared concerned and began looking more intensely at our baby's face. Finally, after what felt like hours, he told us what he saw. A bilateral cleft lip and palate. My heart sank. I couldn't hold the tears back. Our boy had a cleft, and the most severe kind.
I have had to give up many dreams. The dream of natural childbirth. The dream of cradling my baby when he was first born. The dream of breastfeeding. Many, many dreams big and small have been ripped from my grasp, pried out from my fingertips and have drifted away to Neverland as I have stood helplessly watching them fade into the distance.
Our son spent his first five weeks in the NICU. I can't tell you how many trips I made to and from the hospital during that time. Sometimes they let me touch him, sometimes kiss his sweet face, sometimes hold him between the tests they were running on him. I often sat outside his bed as he lie underneath the bilirubin lights since he was so jaundiced, holding his tiny fingers. I remember the first time they allowed me to hold him skin to skin, his little body on my chest. He fell asleep on me. And when they had to take him away, he cried and cried and cried. I remember tears filling my eyes as the nurse put him back in his bed.They ran so many tests on him during that time. There were a number of other anomalies they had found and the doctors were avidly searching for an answer. With every possible test, there was a possible diagnosis. Daniel had to finally ask the doctors to only report to us concrete findings, no more "hypotheticals", as it was too much for my mind and heart to handle. I ached with every possible diagnosis.
We finally were able to take him home. We were so relieved... until the reality hit. We tried every bottle possible and no matter what we tried, our baby wasn't able to take more than an ounce down at a given time, most of the time he didn't make it that far. So we learned how to tube feed him, sometimes we could leave the tube down, sometimes we had to put it down every feeding. The older he got, the more challenging feeding was. Sometimes I still get a bit jealous when I watch a baby take a bottle or breastfeed.
I took my baby in for his 3 month check-up with Dr. Bravo on April 7th. It was then that we received the news that he has an extremely rare syndrome - Simpson Golabi Behmel Syndrome (SGBS). There are currently less than 120 known cases of this syndrome. It often goes undiagnosed as it can be mild to severe in form. The more severe cases are the most studied. In most of the severe cases babies with Simpson Golabi Behmel Syndrome (SGBS) die prior to reaching two years of age, most often from heart failure or kidney tumors. We still have yet to find out the extent of what we're dealing with. My heart aches most days with the unknown.
Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.
My baby turns one tomorrow. My broken baby is a whole year old. I love you, Jackson.
In early December, on a lovely Saturday evening, we headed out with the Caldwells to Holloway's Christmas Trees! Daniel and I have made this a tradition since we were married in 2005, but this was Jackson's 1st Christmas Tree excursion. As you can tell, we had loads of fun!
Riding in wagons...
All by ourselves... (sshhh... don't tell him I'm still holding on!)
And came back with a beautiful tree!
Jackson even had his very own ornament!
We enjoyed lovely Christmas parties at the homes of the Siems and Caldwells - thank you! And even a caroling party at my cousin's house and neighborhood! There's a bit of a funny (and a bit humiliating) story with that one... Well, let's just say I felt so confident we were at my cousin's home, I walked right on in! Only to discover that their house was a few doors down... I apologized profusely and wished them a Merry Christmas! Thankfully, they were very gracious. Oh well...
We spent Christmas Eve with my family - my Mom has a lovely tradition and makes delicious "Christmas Eve Soup" every year! I'll have to carry on your tradition in Texas, Mom!
GeeGee Wright and Nana
Great Grandpa Trine
And then we enjoyed Christmas morning together as a family - Jackson's 1st Christmas! We kept it simple this year and bought Jackson only one present along with a few treats in his stocking!
New Tonka truck!
As you can see, he loved the paper more than the present!
We rang in the New Year with the Caldwells and the Barkers! Happy 2009! Only a couple days till Jackson is 1!!!