January 26 - Dear Nicholas Sparks (Guest Blogger Angie Kelly)

Dear Nicholas Sparks

On December 20, 2013 my life was completely turned upside down.  

 

This was the day that we found out if we were going to have a boy a girl.  We had scheduled our ultrasound for before Christmas because that year part of my 9 year old's Christmas present was finding out if he was going to have a little sister or brother.  We found out that he would have a little sister, a couple of hours later we found out the rest of the news from our ultrasound.  His little sister was going to be born with Congenital Diaphragmatic Hernia (CDH).  We had to wait until January 9 for it to be confirmed, because of offices being closed and shortened hours during the following holiday weeks.  I cried myself to sleep every morning when I would get home from work, but still had to hold everything together for my son.  I couldn't bring myself to tell him that there was something wrong with his sister.  The more that I researched what was going to be our future the more that realized that I not only had to tell my son that his sister would be sick, but that she may never get to come home with us.  More and more time passed and I still couldn't tell him.  I was running out of time, and I didn't know what to say.  Finally about a month before she was supposed to arrive I broke down and told him.  I told him that when Sierra was born she would have to stay in the hospital for awhile, and that she was going to have to have surgery.  I told him that she had a hole in her diaphragm that let her stomach move into her chest and that it was pushing on her lungs.  I told him that he wouldn't be able to see her for awhile.  I also had to tell him that I wouldn't be home either because Sierra would have to be in a hospital that was 2 hours away from home.  He cried for what seemed like forever to me, there was nothing that I could do to comfort him except tell him that I would call him every night and come home to see him at least once a week.  

 

A few days later while shopping he picked out a small stuffed bunny for her to have in the hospital, something that would be from her big brother.  Time was going by way to fast we set up a date to be admitted and induced on April 7 we would be checking into Sacred Heart Medical Center in Spokane.  This gave me a chance to spend all of Logan's spring break with him before I wouldn't be able to see him for awhile.  However on April 4, Sierra had a major change in plans for us.  She decided that she didn't want to wait any longer.  Unfortunately we were not able to make it to Spokane and she ended up being born in Lewiston.  At 5:30 pm Sierra Marie Kelly entered the world 8 lbs 9 oz and 21 inches long.  I didn't get to see her the MedStar team took her away to try and stabilize her and get her ready for her first airplane ride.  I lay there not knowing what was going on if she was ok, or would be ok.  As soon as they let me get up I got dressed and went to see Sierra.  The first time that I got to see my daughter she had tubes and lines everywhere.  She looked so small and helpless, I hated to say good-bye to her so that we could start the drive to Spokane.  As we pulled out of the hospital parking lot in our car Sierra was pulling out of the parking lot in an ambulance.  Because she was a newborn she couldn't go on the helicopter, she had to go by ambulance to the airport so she could go by plane.  I spent the next couple of hours in the car not knowing how she was and if she would be ok when we got there.  

 

When we got to the NICU we were able to see her for a few minutes before being pulled away by the Dr.'s to talk to us about her condition.  There were so many nurses and doctors crammed into that small room there was hardly any room to stand.  They had her on an oscillating ventilator that was causing her whole body to shake, her color looked almost blue to me.  

 

When we went to the conference room with the Dr.s they told us how severe she really was.  They gave her less than a 20% chance of surviving, and told us that she would need to be placed on ECMO to help her heart and lungs recover.  But with her being on ECMO there were possibilities of other complications.  While on ECMO she would have to be on blood thinners that put her at high risk for internal bleeding including brain bleeds, and there was no guarantee that it would work.  We signed the consent forms and were taken to another part of the hospital to wait while she underwent the procedure.  They finally took us to a "sleep room" for the night because the procedure was taking longer than expected, because she also had to be moved to a different unit so that there would be room for all of the extra equipment that she needed.  

 

After tossing and turning for a couple of hours we headed back to the PICU to see Sierra.  Once again her room was full of doctors and nurses, the ECMO machine took up a big part of the room.  There were 2 tubes the size of my finger going into the side of her neck, one taking blood out and the other putting it back, there were 2 IV poles that were both full of pumps with different medications.  I spent the next 15 days staring at those pumps and monitors hoping that they would disappear.  On April 19 Sierra was able to come off of ECMO.  The circuit was good for 2 hours after she came off.  If she didn't need to go back on after 2 hours they would take the machine out of the room.  I spent the next 2 hours staring at the clock and waiting for each blood gas result to come back.  At 1:15 she was still holding her own, at that point I felt like I was having a stare down with the ECMO machine itself waiting for it to disappear.  I was finally able to breathe a small sigh of relief when it was taken out of her room.  The next day on Easter Sunday Sierra had her repair surgery.  I finally felt like we were on the road to recovery.  

 

When they did Sierra's surgery her defect was a lot worse than we had thought, she only had 10% of her diaphragm, but she made it through the surgery.  I spent the next weeks sitting by her bed waiting to be able to hold her.  When Sierra was 5 weeks old I was able to hold her for the very first time.  It took a team of nurses to hand her to me because of the ventilator and IV's.  Gradually we were able to hold her more often and machines started to disappear.  After 79 days in the hospital on June 22 Sierra was able to leave the hospital and come home to us.  

 

CDH has changed my life some for the better and some for the worse.  It made me realize how strong I really was and how strong my family was.  My son went 2 1/2 months only being able to see me once a week and talk to me on the every night before bed.  He has a little sister that he adores and is always worried about people staring at her or making fun of her because of her oxygen and feeding tube.  Our life no matter how screwed up it seems at times is complete with our cherub.  The endless Dr.  appointments, therapy, and feeding schedules.

 

 

 

 

Angie Kelly

Mom to a 9 month old CDH survivor.