Week 31 Check In!

Now that you all know the background, I'll be doing a once weekly check in until Miles is born. All I can say at this point is things are looking great!!! Miles' Chiari and hindbrain herniation are reversing, his ventricles look stable, and we have seen him move his hips, knees, ankles, and even his toes on ultrasound! This momma couldn't be any more proud of her little man!!!

All of his doctors are VERY pleased with his progress, and CHOP has become like a second home to us. I cannot say enough wonderful things about the staff of this hospital. Everyone from the doctors to the cafeteria workers treat us with absolute kindness and caring.

We are hoping and praying to make it to our planned c-section! In the meantime, I'm still on modified bed rest. This means that I have to spend most of my time in bed, and when I do go out I have to use a wheelchair to get around. My one reprieve is our weekly hospital visit where I'm allowed to waddle around sans chair. But all things considered everything is going about as well as can possibly be expected.

Thank you all so much for your prayers and positive vibes. Adam, our family, and I truly appreciate  each and every one of them.  I guess the only thing left to do is the mandatory bump shot. I'll have you all know I made my mother take no less than a dozen pictures until I found one that didn't make me completely cringe! Being camera shy and 31 weeks pregnant is NOT a good combination. Don't mind the closet door...it's been stuck like that since before we moved into the apartment.

Hopefully we will have more great news to share after next week's appointment. 32 weeks is another huge milestone that we are very excited to reach! 

First Visit to the Special Delivery Unit

We arrived at CHOP for surgery at around six o'clock on the morning of May 29th.  My mother-in-law, Yvonne made a special trip in from Pittsburgh just to be there to support Miles and me. As she, Adam, my mother, and I made our way to the Special Delivery Unit, we were some of the only patients moving through this normally bustling, massive building.

Once we arrived in the Special Delivery Unit, the staff wasted no time in getting me prepped and

ready to go. Unfortunately, we ran into trouble with my IV. My nurses had quite a time trying to stick my small, rolling veins. Eventually a very kind anesthesiologist came in to help get the job done. He also gave me an epidural, which definitely helped get me through the next couple of days!

Even though I knew I was in VERY capable hands, I was beginning to feel quite nervous. The only surgery I had ever had in my life was a sedated wisdom tooth extraction. But before I knew it the time came for me and Miles to be wheeled in for surgery. It was comforting that our family members were able to walk back to the operating room with us. After some hasty goodbyes (to avoid tears on my part), Miles and I were wheeled through the double doors for our life changing moment. As we were waiting to be put under, I couldn't help but think of this mural that is the centerpiece of The Fetal Diagnosis and Treatment Center.

I sometimes wonder if it was inspired by fetal surgery as there are famous images all over the web of a little one reaching out and holding the surgeon's finger during an in utero operation. Miles and I were about to undergo a truly miraculous procedure. Our wonderful team of doctors and nurses eased my fears by talking to me and even holding my hands as I drifted off into a very deep sleep. The anesthesia also sedated Miles, so he didn't feel a thing as they operated on his twenty-two week old back. Exactly eighty-three minutes later I was roused from my nap. The surgery was already over! 

The doctors claimed Miles was a "rock star". His lesion was able to be patched with his own skin, and his heart rate stayed steady throughout the whole process. I really believe he is already a tenacious and brave little guy! The wonderful thing about the SDU is that we were able to be wheeled directly to our recovery/hospital room where our family was waiting. They couldn't believe that I was chit chatting with the nurses on my way back from surgery. I was feeling good and was very relieved that the intense procedure was over.

Adam, Miles, and I spent four fairly uneventful days being taken care of by some awesome doctors, nurses, and ultrasound techs in room one of the SDU. The grandmas came to visit everyday, and everyday Miles continued to thrive. We left the hospital and made our way to our new, temporary home on Sunday, June 2nd. The surgery was over, but our journey was just beginning.

What We Did On Our Summer Vacation

Those of you who know me well know that this is not something that I would ever assign to my English students. Yet this cliche seems fitting given what Miles, our family, and I have been though over the past few months. You see, my summer "vacation" began on May 7th...the day of our anatomy scan. Adam and I were thrilled to find that we were having a little boy. The tech said he was perfect! Just one more little measurement and we could go celebrate our baby boy with a nice dinner out and a new baby blue charm for my Pandora bracelet.

But that measurement was never taken. We were informed our baby boy's cerebellum was not visible on the ultrasound. Our world came crashing down around us. We didn't know what to think or do. The next couple of days were an absolute blur. Thankfully, our specialist in Pittsburgh had a cancellation and got us in within two days time. We met with a geneticist. Then we had our ultrasound. Within two minutes of the tech scanning my belly she stated, "Oh, there's a little one." Adam and I looked expectantly at her and said "A little what???" in perfect unison.

Her answer was, "A little Spina Bifida".  It turns out that the misplaced cerebellum in our initial ultrasound is a very common condition in little ones with Spina Bifida called Chiari.  Though this answer was a much better scenario than some that had played through our heads, I kept thinking it couldn't be. I had very faithfully taken prenatal vitamins for over a year before we conceived, I had switched over to all organic cleaning and hygiene products, I had even tried to eat more whole and organic foods. We had done everything "right".

The doctor then came in and explained that Spina Bifida often just happens. Though everything we had done could have prevented a diagnosis of Spina Bifida, it wasn't fool proof.  She then went on to say the words that would drastically change our lives. "There's an in-utero surgery for this", she said. "You'd have to go to Children's Hospital in Philadelphia to have it. And there are risks involved...including premature labor, but I think you'd be great candidates. It's not a cure, but it could greatly help Miles' condition." Adam and I decided we were going to have a consult for the surgery before she finished her sentence. Any of you mothers and fathers out there know the lengths a parent will go to for their child. In my case, it meant allowing doctors to go through me to patch the lesion in our little  boy's spine. The surgery could help both his Chiari and mobility, both of which would give him a much better quality of life.

We were in Philadelphia less than two weeks later. But that's another story for another day. Don't worry folks, I have a feeling this story is going to have a very happy ending.