She's here!

After 30 hours of labor, Molly was born on September 15, 2013.  It was the most amazing day of our lives.  As soon as she was placed on my chest, I looked over to Kevin and said, "She's so cute!"  It was as if no one else in the world, but the three of us, existed at that moment.  As they took her to the opposite side of the room to get cleaned and weighed, Kevin yelled over to me, "Ange, her toes!"  As much as I worried after the initial ultrasound that showed her toes, it didn't even bother me when Kevin mentioned it at that moment.  She was perfect and we were so excited to welcome her into our family. 

When we finally got settled, we still had no idea what the diagnosis was.  My OB even called another doctor in to check out Molly's toes.  He had never seen anything like it and didn't give any type of insight.  I think that's when we started to realize how uncommon this really was.  The next day, we were visited in the hospital by Molly's pediatrician.  It was our first time meeting her.  She too had never seen toes like Molly's, but took a picture and sent it to a doctor she knew at St. Christopher's hospital.  

Of course, I started googling and gave my own name to this.  It was called macrodactyly from the very limited information I gathered.  So now we had a place to start.  Or so I thought...

We had a very tough time with Molly after bringing her home from the hospital.  She was very fussy, very floppy, and didn't take too well to breast feeding.  We tried breast milk in a bottle and she still wasn't very interested in eating.  At first I thought this was typical newborn behavior, but then Kevin and I started to get worried.  On day 4, Molly had her first check-up.  We shared our concerns with our pediatrician and brought a bottle to the office with us.  She tried feeding Molly, but the milk just poured out of her mouth.  The tears then poured down my face - I knew something was wrong.  She had lost 12% of her body weight and was still looking jaundiced.  With that combination, plus our doctor not knowing if her toes had some kind of connection to all of this, she urged us to go immediately to CHOP.  

We arrived at the ER and Molly was taken back right away.  Since my water had been broken for 24+ hours, the ER doctors and nurses tested her for infection.  It was definitely the most scared I've ever felt in my life.  Watching your baby lay there helplessly as she was being poked and prodded was not easy.

 We finally reached our limit when they did the spinal tap.  They could see how upset I was and escorted me and Kevin to a family room and gave us some food.  After they did the work-up and started her on three antibiotics, they broke the news to us that she would be admitted to the NICU.  While she was hooked up to the monitors, Molly kept dropping her heart rate and oxygen levels.  Now the doctors had to figure out why she wasn't eating AND why she wasn't breathing properly.  One doctor was convinced she had some type of obstruction in her airway which was not allowing her to eat and breathe at the same time.  She had a feeding tube placed to ensure she was getting enough nutrients. 

Long story short, it seemed as though the doctors were doing different tests to eliminate the major concerns. She was tested for everything under the sun and all results were negative.  She saw pulmonologists for a sleep study, speech pathologists to fit her for an appropriate bottle, she had X-rays done by plastic surgeons because they thought her jaw was too small, and saw a neurologist for an EEG of her brain to confirm there wasn't seizure activity.  She really had everyone confused because multiple doctors said that she was acting like a premature baby, even though she was full term.  The neurologist suggested that since I had gestational diabetes, she could've been deprived of some essential nutrients which was causing her to act like a preemie.  An orthopedic doctor and a genetics doctor looked at her toes briefly, but weren't concerned at the time due to the other issues going on. 

Once we found the right bottle for her, she began to eat on her own and the feeding tube came out!  She was also started on caffeine to stabilize her breathing.  She ended up being diagnosed with mixed apnea.  CHOP was our home for two weeks; the longest and hardest two weeks of our lives.  We are so thankful for our AMAZING pediatrician who sent us here because in her words, "this is bigger than me."  

We're outta here!

And now back to the macrodactyly...