Wednesday, March 5, 2008

Our Story

How did I get to be one of the luckiest moms in the world?

Getting pregnant did not happen overnight. In fact it took a while. Just when I thought I would give up, I figured-well let's just take the test and see. There was a spot right in front of CVS. Now anyone who has driven through the parking lot that is Bronxville understands the miracle in finding a spot open...and the fact that the spot was located in front of the store, well I should have known right then and there that I was pregnant. The miracle had begun. Once confirmed, there were of course balloons tied to the chair where I sit at my parents' house, a cake and the immediate launch into possible names.

I was so excited. With each ultrasound, each appointment, I became even more excited. I absolutely love shopping for baby and kids clothes. (To the point it may be unhealthy-I mean is it normal to become BFFs with the operator at Children's Place customer service)? At my Level II ultrasound I could not wait to find out the sex of the baby. I was convinced it was a girl. I already had the name all picked out-Madeline Elizabeth. Then the tech said "it's a boy." Confession time. This was really strange for me, as I actually in a split second mourned the daughter I was not going to give birth to. At the same time I was elated it was a boy. I have actually thought about this a lot and figure it this way-for twenty weeks it was just "a baby." It was a mystery, inside a riddle wrapped in an enigma. (BTW-I read that line in a cheesy romance novel-I'm not that prophetic). You picture pink rooms, blue rooms, rooms with roses and daisies and then sports themed rooms. A boy. Wow. I was having a boy.

It was amazing. Until 34 weeks. I'll never forget the day. October 31, 2005. My girlfriend just gave birth that morning to a healthy baby girl. That afternoon my whole world turned upside down. I remember the tech being very quiet. I asked her about three times to tell me the weight of the baby. I thought she was just ignoring me. She printed out some pictures and told us to wait for the doctor. The first thing the doctor said was, "So who is Irish?" My ex's father is Irish and the whole family had those big ol' noggins so the doctor did not think that the fact Preston's head was measuring 40 weeks was any concern. His legs-about 27 weeks. Ok. Now what? We were sent that afternoon to a specialist for another ultrasound. I'll never forget the technician saying, "It looks like some form of dwarfism." My world dropped out from under me. I sobbed uncontrollably. We spoke to a counselor who made an appointment for the next day to see a high risk OB/GYN. I remember leaving the facility in a daze thinking "Oh my God. This cannot be happening."

Yet something strange happened on the way back to my parents' house. I just seemed to embrace it. I don't really know why but I did. I recall talking to Marrah and telling her there was something wrong with the baby. She asked me what she could do. I answered, "Just love my son no matter what."

The next morning we met with Dr. Faustin-or as I refer to him, The King of Zamunda. Did you ever see "Coming to America?" If you didn't you really should hang your head in shame. I mean is there anything funnier than Eddie Murphy working at McDowells and going to Queens to find a wife? Anyway James Earl Jones plays Eddie Murphy's dad and speaks in an accent and I swear this was my new OB/GYN. In fact Katie asked me after my c-section if the nurses sprinkled rose petals in the operating room. We point blank asked him if Preston had achondroplasia. His response was "We think he has a skeletal dysplasia, but it does not look like achondroplasia." Preston was not showing the typical ultrasound achon features-almost infitismal frontal bossing of the forehead, he did not have a flattened nasal bridge and they could not really see his hands to see the trident formation. He was a medical mystery.

You would think I would just sit back and enjoy at this point-but no, I had to find out what Preston had-I just had to know. So off to Columbia Presbyterian to the perineonatalists and perinatologists and all those amazing people from what is supposed to be one of the best hospitals in the world. And Dr. Berkowitz the pioneer of ultrasounds. After the ultrasound I passed my parents and Katie in the waiting room and just said, "It's not good." And what was I told? I was told the following: Preston had a lethal form of dwarfism. Preston's chest was too small to sustain life. I have the option to terminate if I'd like to travel to Kansas, otherwise he will probably struggle to breathe and die right after birth. I was told his limbs were below the 5th percentile. I was told to go to the genetic counselor tomorrow at Columbia to talk further.

Oh and let me tell you what enlightening things I was told the next day...because just when you thought you could not kick a dying dog twice....Preston had thanatophoric dysplasia (a diagnosis that I fought tooth and nail since he did not fall into either the Type I or Type II category) or maybe Jeune's Syndrome. I remember being in this little room in the clinic portion of the hospital. There was Dr. Brown and a genetics counselor. Dr. Brown I remember was so uncomfortable and had a big coffee stain on his shirt. Yes, I remembered the coffee stain. He then told me that Preston will die. Unequivocally. I asked what percentage he believed that to be true-pretty much 100%. Oh and now that the wind is out of your sails, "we would like to contact you after the birth and we would love a POST MORTEM PICTURE!" Are you kidding me? I remember walking out of the office and seeing my parents and just shaking my head. I remember going back to my house and not being able to walk into the nursery. All the beautiful clothes hanging up and in the drawers folded neatly that he would never wear. His name written in wooden letters above the crib he would never sleep in. The boutique bedding we agonized over that he would not spit up on. The tiny stuffed animals sitting around a changing table that would never hold a squirming baby. The high chair in the kitchen all ready for cereal and bananas to be strewn all over. The stroller that would never see the outside of my home. The monitor in my room that would never record the sound of a crying baby at 2 am. It was too much. We packed up and stayed at my parents for the next few weeks.

Over the next few weeks there were appointments after appointments, ultrasounds and non-stress tests. I did not even want to go anymore. We hung the pictures from the ultrasounds on the fridge. We alternated between anticipation and gloom. Part of me wanted Preston to be born because the waiting was agonizing, the other part of me wanted the pregnancy to never end because as long as he was inside of me kicking, he was alive. I dreamed of holding him, but then I asked my father how much it cost to bury an infant. I poured over the Internet. There was hope. There was despair.

The c-section was scheduled for December 1, 2005. Then I received a phone call that they were booked. I mean, seriously? You're booked? Almost six weeks of hell and you're booked? They rescheduled. December 6, 2005. It snowed the night before. I remember driving to the hospital. The ride was so tense. My parents argued over Christmas songs. I stared out the window. When we arrived we asked for a private room. No need to share with some happy mom with balloons and flowers. I'll never forget going into the operating room. Let me set the stage for those of you who have not had a c-section. Have you ever seen a televised lethal injection? That is what the table looks like. I barely remember the spinal but do recall the anesthesiologists telling me as long as they were discussing football I was fine. I remember shaking uncontrollably which they told me was an effect of the anesthesia.

Prior to them cutting me open, I realized that a glass cabinet was in my line of view. I asked that they be opened so I spared myself from watching my organs being removed. And then it happened. I felt this amazing pressure and then this relief and then this baby screaming his head off, (as Mel says giving the world the finger)! I cried so hard and remember thanking God. Matt ran over to me after cutting the cord and said "He is gorgeous. He looks fine! Totally normal." How sad is that? We pictured an alien. Literally thought I was going to give birth to an alien. He rushed over with a picture.

Those hands! I was pretty confident it looked like good ol' achon at this point. His Apgars were 9 and 9. The nurse came over to me to tell me he would be cleaned up and brought to the nursery-the regular nursery. No ICU for this little man. And he totally was not what they expected. In fact they were so stumped. He was 9 pounds, 12 ounces and 19 1/2 inches long! I remember they wrapped him in a blanket and gave him to Matt. I remember him yawning and looking at us as I said, "Welcome to the world Preston. I love you."

I was wheeled to recovery, Matt was pulled out by the geneticist. I called my mother and father who had just been told I was not a patient in the hospital and naturally since this is my mother we are talking about, she assumed I'm dead on the operating table. I kept saying, "He's here and he is huge!" I was still nervous that this geneticist pulled Matt out of the room, but five minutes later they walked in smiling and this doctor gave me a big kiss. I had no clue who this man was, but it turned out to be Preston's geneticist Dr. Angulo whom I have come to love. He told us they were going to take blood because it was not apparent if Preston had achon or hypochondroplasia. Who cared? He was breathing!

Here is Preston at a day and a half old. The irony of this whole thing was Preston was the biggest baby in the nursery out of like ninety babies that week. I'm not going to lie I was still so scared that he was going to stop breathing. My room was full of flowers and balloons and Mom bought cookies for me to serve my visitors (she did not have time to get the baby themed doilies however).



And here is Preston going home. I wore that outfit home from the hospital along with my brothers and sister and about three or four of my cousins. I never thought I would see him in it. Three weeks later it was confirmed that Preston had achon. He is mildly affected; meaning he has not had many of the complications that can arise with this condition. His facial features are mild and he is at the 97 percentile for achons. Achons still have height genes. Because my family is so tall, he should continue on this growth curve.

Preston has enriched my life. You'll see as time progresses with this blog. I have met such wonderful people because of this little miracle. He has taught me and made me a better person. The love for this little man is indescribable. (Even when he throws Cheerios on the floor five seconds before we have to leave and then runs away from me and refuses to get in the stroller...). I love you Preston. Thank you for completing my heart.

18 comments:

Catherine Merciez Wright said...

Kim!
You must have always wondered why I've never written you back! I never knew how to get ahold of you because your email address never showed up. I'm so glad to finally get to see your "little monkey". I can't believe how cute he is! Of course you can add my blog to your list and I will yours to mine. This blogging thing seems to be a phenomenon!
Talk to you soon!
Cat (Owen's mom)

Anonymous said...

I love you and Preston no matter what.

Love you,
Marrah

The Johnson Family 5 said...

Wow!! Thank you for sharing your story!! It's kind of funny how every story is so different, but so similar! We were never told lethal or Achon. It was.."we think" he has a skeletal dysplasia. The not knowing was the hardest for us! We clung to hope that nothing was "wrong" with him. Isn't it funny how after so much sorrow we have soo much joy!! Preston is a little miracle! To think if you would have listened to those doctors he might not be here! What a lucky boy Preston is to have you as his mom!!

Anonymous said...

Kim you are so cool...I have not dared venture into the world of blog yet! I don't even know what blog means! We are so happy to read about the adventures of Preston. Our pregnancy stories are what brought us together, and I am so glad for the friendship we share and the wonderful boys we have! We love you Preston!

Anonymous said...

I remember that day too when you found out about the dwarfism. I cried on the way how from The Surge with dad because I thought Kim's not going to take this well. And then I walked in and you were sitting in the American Idol chair and I threw my arms around you and you were so calm. It was so weird; I saw a different side of you that night. A side full of love and responsibility and nuturing. To me it was when you first truly became a mom.

And I am sitting at my desk right now crying. I can't believe how much you went through and it just kills me everytime I think about it. You're so so strong , Kim. You're absolutely amazing.

Oh and, did Dr. Brown's coffee stain talk to you?

Lisa said...

Welcome to the blogosphere. Our little girl, Elizabeth has achondroplasia too. She'll be 4 in June (hard to believe). We'll be interested to read about Preston's daily journeys.

Sarah said...

I read your blog thru Katie's. What a great story and such a cute little man you have! We too have a lp daughter who is 8months (not achon though). Our son who is ah is almost the exact same age- 12/2/05 is his bday :) It's great that you are sharing your story and I look forward to following you on your journey! Preston is truely adorable!!
If you are interested our blog ishttp://adayinkaelaslife.blogspot.com/.
Sarah

Jennifer said...

Oh my gosh! I can't get over how similar your story is to Cat and Dan's. I am Cat's mom, Jennifer, and I have turned into a blogaholic. I think I need a support group or maybe I should start one! Anyway, I am looking forward to learning more about Preston and seeing MORE PICTURES!

Tonya said...

As always, Kim, your are a very cool momma! Thans for sharing Preston with us and your birth story!!

Anonymous said...

Kim,

He is a perfect lil man... and both of you are so strong and amazing together. I love you both!!

xoxo
Maeve

Anonymous said...

Oh my goodness...what an amazing story! I am Cat's sister...Owen's aunt. I can't believe how many simialr stories there are out there...but you never hear about it until it hits close to home. You have a beautiful boy and you must be an amzing strong woman! Congratulations!

Anne

Jaime said...

Hi Kim, I'm Jaime, Caitlyn's mom from the POLP site. I came upon your blog through Tonya's and have enjoyed reading Preston's story. He is such a cutie! I am in the process of creating my own blog and would like to know if it would be okay to add a link to your page? I hope that all is well with you and your family! Take care and enjoy your weekend!

Caden and Mommy said...

Amazing story Kim! Your blog is great, quite entertaining! :-)

I'll link you and Preston to my blog as well, if okay with you?!

Trisha

Andrea said...

I just read "our story" and I'm in tears. What a roller coaster! I can't even imagine...Evan, too, was the largest baby in the nursery (10 lbs.)! How ironic, huh!?

What a blessing you have!

Julie Rosenthal said...

Wow Kim, I just ventured to your blog, and what a fantastic life-story!!

xoxo Julie

Chelsea and Cody said...
This comment has been removed by the author.
Chelsea and Cody said...

That is an amazing story. I am so glad that you contacted me, Kim. I am still in a ton of shock from the diagnosis (thus far) and it is great to hear success stories that seem to start out as not-so-happy endings. I have tons of questions that I am sure that you can answer, and I look forward to keeping in touch with you! Until then, I am going to keep reading this blog of yours! I have read a few posts and we seem similar in the shopping area...I have no idea how to dress my little man when he gets here! It seems like your shopping addiction has paid off with some adorable clothes for him, so I am sure that mine will, too!
BTW, of course you can add Baby W's blog to your blogroll!

Kerri said...

wow, what an amazing story!!! I am so mad at those Dr's for giving you the option to abort the pregnancy, and thank goodness you didn't! What a blessing Preston is to you and your family!