Raygen's Story

When I was 19 weeks pregnant my husband, daughter Zoie and I were all so excited to go and find out what we were having.  I was told then, that there was a "small" concern with her heart and that they wanted to refer us to NW Children's Heart Care.  I was devastated.  I wasn't sure what was going to happen.  We had been trying for about 2 years to get pregnant with this baby.  I had been on clomid and had 3 IUI's and 2 miscarriages.  This pregnancy was the make it or break it.  If this didn't work out then I knew our family would be 3.  So when I got the positive pregnancy test with Raygen I was thrilled but terrified all at the same time.  My pregnancy up to 19 weeks had been touch and go.  I had started to bleed and was placed on hormones and I had a lot of cramping and was very uncomfortable.  Looking back now I kind of knew something was wrong, but I never expected to hear what I would hear.  At about 22 weeks pregnant I was told my daughter had HLHS or half a heart.  My families world changed at that moment.  I didn't know what to do.  I was so scared of the unknown and if I would be able to bring my beautiful daughter home to meet her sister someday.
Raygen was born on March 23rd 2012 at the University of Washington in Seattle.  She was perfect.  You wouldn't know anything was wrong.  This was the most precious moment.  The first time I held my daughter.
Raygen was taken and admitted to Seattle Children's Hospital within hours of her birth.  She was born at midnight and by 2am she was in a hospital bed with an iv medication that would keep her heart working till her first open heart surgery.  When Raygen was 3 days old her body was having a hard time regulating her oxygen levels so she was placed in a nitrogen oxcide tent.  This helped keep her oxygen levels in a "safe" range for her till her first surgery.  Raygen was 6 days old when she had her first open heart surgery the Norwood. 
Raygen was in the CICU for a week with her chest open due to swelling after the norwood. 
The first time we saw those beautiful eyes after surgery. 
Chest closure
After one week on the ventilator Raygen was ready to be exubated.  She was placed on a high flow nasal cannula because it was discovered that both her vocal cords had been paralyzed. 
Raygen was then transferred to the "floor" or "step down unit."  We spent a week there before things went terribly wrong.  With trying to wean her off of morphine and trying to wean her off of high flow oxygen Raygen's body could not handle it.  After a week of struggling to breath and to handle withdrawal we were rushed back to the CICU with dangerously high CO2 levels.  We were hours away from loosing her.  I had never been so angry at doctors in my life and still struggle with this.  I have so much guilt and could go on and on about this stage but I'm not going to dwell.  I'm going to continue with Raygen's story.... 
Raygen was then placed on the ventilator AGAIN.  This helped her body rid itself of the CO2. 
We tried again to see if Raygen would be able to rid herself of the CO2 and she was exubated and placed on C-pap.  I hate C-pap and so does every baby that is placed on it.  It was short lived and hours later she was placed back on the ventilator. 
Randy and I were told then that either Raygen lived on the ventilator or we do a tracheotomy.  I pick neither, but living on a vent is no way to live and with a trach the possibility of home was in the future.  Although no one could have prepared us for a trach. 
Raygen had to spend a week completely still in the CICU after her trach surgery.  It was so hard to see our baby with a trach.  Her airway open to the world.  We had no idea how stressful a trach would be and what type of care and training we were in for.  But Raygen is worth EVERYTHING and ANYTHING.  There isn't anything we wouldn't do for this wonderful little girl.
This was the first time I got to hold Raygen after her trach surgery.  This day we were finally moved out of the CICU and back to the floor.  This is when the real fun began.  Randy and I had a month of training at the hospital for Raygen and her trach.  We learned everything.  It was nice to know that I could take care of her but so scary.  We learned to suction, switch out a trach, cpr and everything else you can imagine.  We also had to get our home nursing set up. (I could go on and on about this, but I won't.  I'll save you the drama.  Home nursing is no fun.  Thank God for Denise and Sasha.)  While we were learning to care for our baby and get our home ready for her, she was still struggling.  Raygen was still on morphine and had been for a long time and was having a hard time being weaned and her heart rate was in the 180's all the time.  A 180 heart rate is not right, no matter what the doc's tell you.  Finally we were able to see pain services and they came up with a wean from methadone for Raygen and it was the best thing for her at that time.  We finally got to see our baby.  Her heart rate began to be normal and she started to shine.  It's amazing how happy a baby can be when she isn't always going through withdrawal.
We finally got to bring Raygen home June 23rd 2011.  She was 3 months old.  What a journey she had been through.
Raygen's first photo shoot at home.  July 2011

Raygen was admitted to Children's for a cold, G-tube surgery, and a heart cath before her surprise decannulation in November of 2011.  When we arrived at Children's on that November day with the plan for Raygen to have her trach taken out and placed on a ventilator for 5 days to give her stoma a chance to heal before her second open heart surgery, the Glenn.  This was such a sad time for me.  I hated to see her on the ventilator again and then knowing we would have to do the whole trach surgery over again after the Glenn just broke my heart.  I wanted to snuggle and comfort my baby the 5 days before major open heart surgery.  
The doctors felt that if Raygen had any chance breathing without her trach then before her heart surgery would be the time to let her try.  So it was decided that day to let her have her chance.  Raygen did great!!!  God is good, all the time!  We spent about 4 days at the hospital with our baby who now, we could "hear" cry, before we headed home again to wait to reschedule her Glenn.  This was an amazing gift.  No one thought this was possible, but it is just like Raygen to prove us all wrong.  This girl can handle anything.
December 2011 Raygen had her second open heart surgery.  We were at the hospital about two weeks.  Rayen spent her 1st Christmas in the hospital, but was home in time to ring in the New Year.  Raygen also had to have a heart cath with a stent placement.  She did so good though.  She is a tough cookie.
Now Raygen is home, happy, and healthy.
In March 2012 we celebrate her first birthday! 
Now we try to make life as normal for Raygen and Zoie as possible.  Randy and I are both back to work and trying to make a great life for our girls.  Our days consist of therapy and getting Raygen all caught up.  She is starting to roll over and baby talk and soon I know she will be crawling.  Our biggest struggle now is getting Raygen to learn how to eat.  To want to even "try" food is a struggle, but we won't give up, ever. 
Raygen has made our family complete.  She has an amazing big sister, Zoie, who has been so wonderful and strong through all of this.  Although our journey is not over and Raygen will have to have another heart surgery she has made our family stronger.  Raygen is the missing piece. 
Raygen we love you to the moon and back and your daddy and I are so lucky to be parents to two wonderful, beautiful, strong daughters.
I also have to thank the wonderful doctors and nurses who have helped Raygen through her journey.  Seattle Children's is a wonderful place and without them my daughter would not be here and also thanks to Dr Park at NW Children's Heart Care.  I know that we had some issues with a few doctors but when you have a medically ill child as unique as Raygen and who spent so much time in the hospital there are bound to be bumps.  I know Children's is a "teaching" hospital and I just pray with all my heart that they learned something through Raygen and another child will be treated better because of Raygen's journey.  Thank you to all of the doctors, nurses, surgeons and so on who have made our journey possible. 

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