After our first appointment we were a little less anxious about everything, but we did find a small issue with Mia's placenta.  There was a small tear towards the end of the placenta which would lead to problems later.   

Towards the middle of March we decided to fly out to San Francisco to visit with our family.  Once we arrived in California something with the baby didn't feel right.  After rushing to the ER because of a chorionic hemorrhage, a large area of bleeding near the placenta, they told us the baby was ok but they weren't sure if she would make it because of the placental bleed.  We were told to watch the bleeding and return to the hospital if it became worse.  So we enjoyed the rest of our trip and eventually the bleeding stopped before we left.  Of course, as most people know, that wasn't the end of it.  On our way home to Illinois we had a layover in Phoenix, AZ.  While the plane was getting ready to take off I had another experience with the hemorrhage which caused the plane to stop and return us to the airport.  After another hospital visit they determined that Mia was still doing well but that the bleed just wouldn't heal itself.  The next day we finally returned home without anymore incidents. 

At around 12 weeks we went to a hospital in St. Louis for a sonogram to make sure Mia didn't have anencephaly or any other neural tube defects.  While there we found out she did not have any neural tube defects but did have an abdominal wall defect known as gastroschesis.  Gastroschesis is a defect in which some or all of the intestine grows on the outside of the baby's body.  In Mia's case she only had a small  portion of her intestine on the outside.  So small in fact that they mistook her for a boy at that appointment.  The good news was that gastroschesis is fixable with surgery.  A few weeks after this appointment we found out that our little "Alexander" was actually Mia.

Throughout the remainder of the pregnancy they continued to monitor the chorionic hemorrhage and the gastroschesis carefully.  We were very surprised because Mia's gastroschesis never got any bigger than a 1/2 of an inch.  We were told this was a good thing because it would make for a quick fix surgery, but in the end it was the opposite.

On August 7, 2007 I began having contractions and was admitted to the hospital and put on Magnesium Sulfate to stop them.  I was only 30 weeks pregnant at this time.  The Magnesium Sulfate helped for a time, but eventually my contractions started again.  They decided the keep me in the hospital until Mia was born.  Her due date was not until October 12 so you can imagine our dismay at finding this out, but we were willing to go through anything to get this little girl here safely.  After staying in the hospital on medicine for a week Mia decided she wasn't going to wait anymore.  When my contractions became only minutes apart they took me in to do a cesarean section on August 13, 2007.  Mia weighed in at 4 lbs. 15 oz. and was 17 in. long.  She was a pretty big girl for being two months early! 

After she was born they told us her defect would not need immediate surgery because it was contained in a sac and was still so small.  We found out later that because her gastroschesis was so small it had cut off blood supply to a good portion of her small intestine which had died.  So over the next few days we prepared ourselves for her surgery.  During her surgery they removed the dead intestinal parts, gave her a colostomy bag and a placed a gastrostomy tube in her stomach. 

After the surgery was finished we found out that Mia now only had about 12 cm of intestine left to live on.  The normal amount for a baby is 200 cm.  She did not have enough intestine to survive on and was diagnosed with SBS or Short Bowel Syndrome.  They then decided to send her up to Children's Memorial in Chicago, Il for a rehabilitation program which would give us other options to help her intestine.  In Chicago she was placed on TPN, total parenteral nutrition, which helps her get all the nutrition she needs through her veins.  She was also taken back into surgery when she was a month old to reverse the colostomy bag and to place a central line in a vein above her heart where she would receive her nutrition at.  From there we waited for a small bowel transplant to be available for Mia.

The transplant itself is a long and difficult road to overcome, but we are prepared to do whatever it takes to help our little girl live a healthy and full life.

On February 14th, 2008, Mia was officially listed for a small bowel transplant.  We spent the next year in and out of the hospital with central line infections.  Until February 5, 2009, when Chicago Children's Memorial Hospital's Transplant team called us.  It was 09:08 on a Thursday morning, and Dad had just gotten to work.  Once we got the call, we immediately loaded Mia up and drove to Chicago.  Mia was taken into surgery at around 22:30.  They began the operation at about 23:30, and received the organ at about 01:00.  The surgery was finished up at about 05:30 Friday February the 6th, 2009.  The doctors were very happy with the outcome of the operation.  Mia spent the next few days in the PICU recovering from surgery.  She made an awesome recovery and then was transferred to the GI Floor in a record breaking time.  She now is recovering on the GI Floor at Children's Memorial Hospital, where the doctors can keep a close eye on her.  We thank God everyday for blessing us with Mia, and watching over her and helping her to recovery from her surgery, and be a strong girl, and accept this new organ.

We love you Mia Kylie and we're all so very proud of you!!

Love,

Mommy & Daddy xoxoxo