Wednesday, February 15, 2012

Ashlynne's Story

I had a completely normal pregnancy with Ashlynne.  I found out at 4 weeks and 1 day that I was pregnant, so we had lots of time for ultrasounds!  I believe that I had 6-8 of them and was told that everything was perfect and that we were expecting a wonderful, healthy baby girl. 

 I had a scheduled c-section because my first daughter was born by c-section.  Ashlynne Marie Morey was born on June 29, 2011 at 8:04am weighing 8lbs 3ozs and 19 3/4inches long.  She was absolutely perfect!  When the nurses took her to the nursery for her stats to be done 3 times a day, I hated it because I didnt want my newest lady to be away from me for even a minute!  She passed her hearing test and her other little tests that they do with ease.  Since she was a csection, they make mommy and baby stay in the hospital for 3 days. 

On our second night in the hospital, Ashlynne went to the nursery to get her weight done, a bath, and for them to listen to her heart.  They brought her back and said that everything was great.  The next morning, her pediatrician came into my room and told me that a nurse that was working on the overnight shift thought that she heard a small murmur in Ashlynnes heart.  Then she proceeded to tell me that on a scale of 1-5, with 5 being the worst case, Ashlynne was less than a 1.  After our little chat about murmurs, Dr. Kane told me that they were gonna release us that day (July 1st) and that since it was 4th of July weekend, they were gonna send us an hour away to go to see a pediatric cardiologist, just to ease our minds over the holiday.  

They made us an appointment to be seen at 11:30am and we weren't released until around 11.  They said "Dont worry if your late, they will still see Ashlynne" and that is when we started getting really nervous.  Upon our arrival at the peds cardiologist, they called us back almost immediately.  When the doctor came in and listened to her heart, he thought that she may have stenosis in a valve, and that it would probably end up just fine. 

Then they sent Ashlynne to get an EKG and then an Echocardiogram.  We waited eagerly for the doctor to return to the room with the results.  What happened next was unbelievable.  My fiance and I were told  that our 2 day old baby has a condition called a Complete AV Canal defect and would require open heart surgery before she turned 5 months old.  What happened after that, im not quite sure, I was so unbelievably shocked and stunned that I didnt hear much of anything.  Ashlynne would now go to the pediatrician multiple times a week to be checked and to the cardiologist at LEAST twice a month.  It seemed like we lived there. 

At three weeks old, Ashlynnes dad and I noticed that her breathing had started to change and that she seemed to be going a million miles an hour with her little lungs.  The doctor then put her on Lasix, a water pill type of a medicine, to help with Ashlynnes breathing.  She continued to see the doctor every 1-1 1/2 weeks for weight checks and to just listen to her.  Everytime we went to the doctor, there was an intern or a nurse or another doctor that listened to Ashlynnes heart, because not many of them had heard a baby with this condition.  It felt like she was a circus attraction at times. 

Ashlynne continued slowly gaining weight and growing, but in NO way was she growing like normal babies.  Around 3 months old, we were finally able to get Ashlynnes records sent over to the Childrens Hospital of Philadelphia (CHOP), and got to meet a wonderful peds cardiologist, Jodi Chen.  Dr Chen saw Ashlynne and they did an EKG and another Echocardiogram and with the results, they scheduled Ashlynne to have surgery. 

 It seems like everything went so fast after that point.  Ashlynne had surgery to correct her CAVC on October 28, 2011 with Dr. Stephanie Fuller.  I dont think that I have ever been so terrified of anything in my entire life as I was that day.  After handing off Ashlynne to the anesthesiologist around 8am, we were sent up to meet and talk to Dr Fuller, who would explain to us the entire procedure.  She was a very nice woman, very calm and confident. 

 After talking to her for about 15 minutes, she went to start the procedure.  My fiance and myself were to stick around the hospitals "bridge" or around the Ronald McDonald rooms that were set up for the parents in the hospital so that we could get our hourly updates on Ashlynne.  Jess, our nurse, was amazing.  She came and found us less than an hour later to let us know that Ashlynne was just put on bypass and they were gonna start the repair.  My nerves at this point were absolutely shot.  About 45 minutes later, they were DONE!!!! They were going to do an echo in the OR and then sew her up! 

Thank God that our baby was fixed!!!  We then sat in a room for what seemed like forever, waiting on Dr Fuller to come talk to us again to let us know how everything went.  She finally came in and said that everything went well and Ashlynne was in the CICU (Cardiac Intensive Care Unit) and being cleaned up and set up for us to see her. 

About an hour after that we finally got to see her.  Our little trooper was sleeping so peacefully.  She looked great, consitering what she had just been through.  She was gonna be sleeping for much of her time in the CICU, so that she could heal.  I wasnt allowed to hold her until the night of the 31st, because she went into JET, so her heart rate was funky so they kept some wires in her that they normally would have taken out.  Those 4 days were the hardest 4 days of my life.  Watching her lay there and not being able to scoop her up and love on her. 

Ashlynne went into the CCU (Cardiac Care Unit) on November 1st which was 4 days after surgery.  She was awesome.  She finally got to take a bath.  And we were given a little box so that we could walk around the floor, instead of her laying in bed.  It was the best!  And finally, the next day, we were able to go home!  Only 5 days after having open heart surgery!!!!  What a trooper our Ashlynne has been! 

About a month after surgery, Ashlynne was allowed to stop taking her lasix and has been medicine free for over 3 months now!  She has a residual VSD, which means one of her patches on her heart has a little leakage around it.  In the future Ashlynne may require another surgery to correct this, but as of now, she is doing great! 

The cardiologist has cleared her for no visits for 6 months to a cardiologist!!! This is amazing since we pretty much lived at doctors offices for the first 4 months of her little life.  Ashlynne is now 7 months old, and doing amazing.  She just got her first tooth a few weeks ago, and shes sitting up like a trooper and trying to get around.  I have never seen such an amazing baby in my entire life, and I thank god that her story has ended up a happy one.

Here is a link to the video story that her Mama made.

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