"Everyone needs a place to call their own"

Ayla's Story

When I was pregnant with Ayla I went in for a check-up at about 30 weeks.  My Dr. checked my fundal height and I was  measuring larger than I should have for the amount of weeks I was.  So she wanted to do an Ultrasound to look at the fluid around the baby and she saw an "abdominal mass" she explained I would need to see a high-risk dr and left the room to schedule my appointment.  While she was gone I had a breakdown, so many thoughts were going through my head.

I gathered myself and went out to the desk to get my appointment it was 4 days away.  The family was notified and many prayers went up for our baby girl.  The days dragged on and our appointment was finally here.  Larry and I drove over to Pensacola (about an hour from home) and Karen (larrys mom) and friend met us there.  We waited a long time for our name to be called, we had a long ultrasound and then waited for the Dr. to review it and come and talk to us.  After a while he came in and explained to us that the "mass" appeared to be a bowel obstruction.  And that this is commonly seen with Cystic Fibrosis.  We had never heard of it and blew it off rather quickly.  He wanted to test me to see if I was a carrier anyway.  He gave me meds to keep the contractions in control and put me on bed rest.  We drove home in a fog and remained in shock for days.

After almost 3 weeks the nurse called and plainly told me that I was a "carrier" for CF.  And they would like to now test Larry.  We were sure he would not be a carrier, the chances were just too small.  But another few weeks went by and we found out he was.  Our Dr. seemed pretty sure the baby would have CF from day 1.  This really turned us off and we all wanted to "kill the messenger"- it just seemed like he was being so negative.  Like miracles couldn't happen.  We now moved on praying that our baby would not have Cf, after all it was only a 25% chance.  The weeks went on and I was able to carry Ayla to term.

I was scheduled to be induced on April 10, 2007.  At 8:06am Ayla was born.  She cried immediately and we were so happy to hear that.  She weighed 6 pounds 11 ounces and had a head full of hair.  I was able to see her but she was quickly taken away to have surgery to remove her bowel obstruction.  I felt so helpless in my room not being able to await news from the surgeon with my husband.  He finally came in and told us that the surgery went well, she was in the level 3 NICU and would remain there.   She would have to have a 2nd surgery to re-connect her intestines which were brought up to the surface of her skin and an ostamy bag was placed over the openings.

Days turned into weeks as we waited for her to absorb her food and to stop dumping.  Basically just pooping out whatever she was eating.  We were told if she was able to eat well she could go home and then come back for surgery when she was stronger.  The test came back and sure-enough.....she has Cystic Fibrosis.  It was just another shock in what seemed like nightmare.  I was able to breast-feed her a few times but with the enzymes and her need for more calories I pumped for months three times a day.  I always wanted to breast-feed and know the importance of that and was very upset that I couldn't breast-feed naturally.  As time went by Ayla's eating was not improving and they moved up the surgery to reconnect her intestines to May 14th.  A day after Mother's Day.

Her 2nd surgery went very well, it was different this time because I was able to wait in the waiting room for news of her surgery like other parents.  After that surgery Ayla began to grow and eat well.  Less than two weeks after that we were on our way home.  On Memorial Day 2007.

I stayed in hotel in the city where she was born.  We had to deliver her where there was a NICU capable of caring for her.  And her dad went back and forth from work to see her.  It was probably the longest 7 weeks of our life.  Bringing her home to her nursery was like a dream.  So many things that mother's take for granted I really missed.

A week later we took Ayla to see the pediatrician, the Dr. was concerned because of her jaundice.  The hospital said that at times kids who spend a lot of time on fluid-nutrition instead of food can become jaundice.  But after a few days it should subside once being off of it.  Her Dr checked her levels and they were still high.  And worry set in for us again..He also reccomended that the GI Dr's see her very soon.

Weeks went by and finally our check up's were scheduled.  The Dr's became much more concerned when they saw her coloring and I got very worried.  Her Dr scheduled her to have a Hyda-scan.  He then explained that she could have rare condition called Billiary-Attresia, which means that toxins are not draining from her liver and are backing up into the blood stream causing the jaundice.  The family was notified again and prayers began.  We just knew that this was not the case for our baby.

It was the day of the test and my mom and mother-in-law came with me.  They injected a dye into her blood stream and watched it to see if it left the liver.  I knew what I was seeing and it was not.  They repeated the test for hours and even brought us back the next day and the results were the same.  Ofcourse they would not tell you but I knew what I was seeing.  I went straight to the GI Dr's office to talk to him about the test.

It turned out I was was right, the dye did not leave the liver and he was convinced this was Billiary Attresia.  He told me he would be calling me within a few hours after he scheduled her to be admitted to Shands Hospital in Gainesville.  I knew this was serious when the hospital that handled her previous surgeries and CF could not handle this one.  On the way home I was in tears, full of fear and dread for my baby.  I knew that the odds of success for the surgery she needed were better if done before 12 weeks of life.  And we were at 13.  I got the call on a friday and we were to be in Gainesville on Sunday.

I got home with Ayla and larry's mom had called him to tell him what had happened.  I dreaded having to give him more bad news.  He just hugged me and we cried for fear of what was to come.  I began packing and getting ready for another long hospital stay.  This time was different though because I was able to stay with her, which made me so happy.  Once we got checked in it was a couple days of waiting for all the Dr's and test to be done.

The day had come for surgery (July 15) and the rest of our family had come to be there for us.  It was a tough day.  She was put on a bed and rolled away from us.  It was terrible to think of what she was thinking going in for a 3rd surgery.  We began to think this could be our daughter's life...would she ever be healthy?
They said the surgery would take between 3-5 hours.....8 hours went by and we were all going crazy thinking something terrible had happened.  Finally they called my name in the waiting room and the nurse was on the phone.  She told me that the amount of scar tissue that was there from her previous 2 surgeries had made it very difficult to get in there.  And that's what had taken so long.  But things were going good.

They had to replace her bile-duct (or drainage tube from the liver) and the surgery went well.  Only time would tell if it was sucessful or not.  After the surgery Ayla recovered well, she was moved out of ICU in less than 24 hours after surgery.  We only stayed in the hospital for 6 days and came home.  We had to come back for post-op appointments in 2 weeks.  Bringing her home again was scary.  I was so afraid that some other problem would arise and we would be so far away from Shands (4 hours).

Time went by and Ayla healed well.  It was time to go back for our check-up in Gainesville.  The appointment went good, and it appeared Ayla was recovering from surgery.  She was put on meds daily to prevent infection.  We began seeing Pulmonary (CF clinic) as well as GI @ Shands.  We just felt  like that was what was best place for our daughter.  They wanted to see us back monthly for GI appointments to monitor her Billi-rubin and other liver enzymes.

As months went by Ayla's numbers continued to improve.  Her surgery was deemed a "success" and we had another miracle.  Ayla has been through so much in her young life, she has seen more health issues and troubles than most parents.  And we as parents had become stronger too.  I would have never thought I could ever make it through the things we have.

As I am writing this Ayla is 3 years old, she is happy and healthy.  She has continued to have good check-ups and hasn't had to have anymore surgeries.  When Ayla was born I had days where I thought she would never be "normal, " she would have a life in & out of the hospital.  Today life is so much different than I thought it would be.  So much better!  Ayla's conditions don't run her life or define her.  They are an important part of her life but not the center focus.

After going through everything with Ayla I can remember thinking I wasn't sure if I wanted to have more kids.  Not because I lacked the desire but because I gained the fear.  I am happy to say that Larry and I will begin trying to get pregnant again soon and hope our 2nd child will be just like Ayla.
She has helped us in so many ways, she loves people and always has a smile on her face.

Because of her we are better parents, more sympathetic people, and have more pride in ourselves.

She has given us so many reasons to smile and she is forever our "Little Miracle"