Wednesday, December 5, 2012

"O" Baby

Every parent knows their kid will be special, we just didn't expect to get scientific proof that ours was one in a million so soon (the actual statistic is 1 in 5,000 but who's counting?) In addition to what's explained in the email I sent to our friends and family below, our Goose is special because she has already taught us an incredible lesson. . . . we've learned to count and appreciate every thing that has gone right and be thankful for those things instead of focusing on the one or two things that may not seem quite perfect at first.  See, she's already smarter than us.

Copy of the email:

Hi Everyone,

I apologize in advance for the long email, but as many of you know there's been quite a bit going on with us this week and I wanted to catch you up since many of you were expecting a 'pink or blue' text sometime last Tuesday . . .

What we thought was going to be the best day/birthday ever turned out to be one of the most challenging days of our lives. To start, Mark's family was in Ohio attending his grandmother's funeral that morning - he stayed back to attend the 20-week ultra sound with me but it was bittersweet knowing our little goose would have been her 39th great-grandchild. We were still excited to be there and anxious to find out the gender and just loved seeing the first real pictures of our goose dancing around. Everything looked good, but we were suspicious when they sent us to the waiting room and called us back in to re-measure a few things. Before we knew it we were being handed paperwork with instructions to schedule an immediate appointment with the bigger hospital in La Jolla. Our little goose had been diagnosed with an omphalocele - a birth defect where some of the tummy organs (liver, intestines, bowel) were incorrectly developing outside of the baby's body. Our excitement had been replaced with absolute shock - I was devastated. It felt like a bad dream not knowing if the baby could survive this or if it could be fixed (and what their quality of life would be if it could).

After a very sleepless night, we made our way to La Jolla for an early morning visit. After three stressful hours of tests, meetings and discussions with our new doctor, it was confirmed that our baby did in fact have an omphalocele. The good news - the defect was small, only a small portion of the bowel was outside of the body. The bad news - one of the kidneys was holding too much fluid which alone would not have been cause for alarm, but in conjunction with the other defect meant there was a much higher likelihood that both were the result of a much more serious chromosomal disorder (50-70% chance). At their recommendation, we agreed to do an amnio test which at best could give us some peace of mind for the next couple months, and at worst, allow the doctors to be more prepared for when the baby was born. We paid the extra fee to have access to prelim results for the 'big three' and have spent the last two days anxiously awaiting the results. We got the call this afternoon saying that the initial results looked good, but were gently reminded that it was not 100% and even so, there are a number of other genetic disorders that could have caused these defects. Nonetheless, we are so grateful for even the slightest bit of good news!

Throughout this crazy week I've realized there are so many things I am grateful for. First - my husband. For every bit of a leaky wreck I've been he's been that much more amazing and I don't know how I could have handled this without him. Second - our care. We're lucky enough to live near one of the best children's hospitals in the country and I know we'll be in good hands for our (extended) stay sometime in February. My original doctor even called me herself to apologize for having to give bad news on my birthday and to assure me we'd be well taken care of at the new hospital. Third - my friends and family. Thank you SO much for your emails, texts, flowers, happy thoughts and prayers you've sent our way. . .it has meant everything to us.

We've definitely got a long road ahead of us. I've had to transfer doctors as I'm now considered high risk and will need a number of additional tests and visits over the next couple months. Instead of Scripps La Jolla we'll be delivering at the UCSD hospital where the baby will have surgery a day or two after birth and will need to be monitored in the NICU for some time after that. We're still awaiting the full results of the chromosome tests and may have more tests yet to come. Beyond that, we don't know. So if you've got extra prayers lying around please feel free to send them our way. We already know our little goose will be perfect in every way, but nobody wants their child's life to be any harder than it  has to be. Even though it has been hard, we are completely in love and cannot wait to become parents in February.

And by the way, the cake was PINK.

Love,
Mark, Dina and Baby GIRL Mohnacky


Birthday cake - it's a girl!


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