July 9, 2009
It's easier right now to just send this out rather than tell the story a million times.
Kelly was 29 weeks along and everything seemed perfect. She was still a little nervous though, since losing Jackson was such a shock. She even bought a doppler last week so that she could hear Claire's heart.
On Monday I was staying at my parent's after going to a game with my dad and brothers. Kelly was at home and was nervous since the baby seemed to stop moving as much as she had the previous few weeks. She felt like she should go to the hospital to check it out. She got the kids up at 11pm, dropped them off at her mom's and went to the hospital. After monitering the heartrate for over an hour they felt it was a little sluggish. The heart rate was normal, but never seemed out of a sleep pattern. They thought the rythm indicated the baby was anemic. They continued to monitor her and run tests. Kelly texted me about 4am and so I came to the hospital. High Risk doctors were called.
As I was walking into the hospital Kelly called to say that they determined the baby had hydrops. I don't remember hearing anything about hydrops in nursing school so I didn't know how serious it was. Basically it's defined as having fluid in 2 or more organ compartments. The baby's lungs and abdomen were filled with fluid. They assembled an amazing team of specialists to our case and even conferred with doctors from around the country. There are literally hundreds of potential causes of hydrops. They told us that they would do amniocentesis to draw amniotic fluid, attempt to drain fluid from lungs and belly, and draw blood from the cord. They were able to draw amniotic fluid and 60cc of fluid from the baby's belly. As Kelly recovered through that night the baby's heart pattern started heading in a dangerous direction and they decided early that morning to do an emergency c-section. With 7 doctors and 6 nurses they deliverd Claire Elizabeth at 7:04am 7/8/09. She was very, very edemetous - swollen in her head and limbs. They put in chest tubes in both lungs and tubes in the abdomen to drain off the fluid. They intubated her and put her on a ventilator.
She was attempting to breathe on her own after delivery so that was a good sign. All through this process they let us know that her chances were not good. We had a lot of hope that she would survive despite their concern. They rushed her to the NICU and continued draining her lungs and belly as well as giving her blood transfusions for the severe anemia. We had the kids come the hospital and meet their sister. They loved seeing her. She would squeeze our hands when we placed a finger in hers.
As the third hour passed Claire went from being somewhat stable, to not being able to perfuse oxygen to her lungs and other organs. She began to deteriorate. At the end of the 4th hour it they assured us they had done all they could for her and any time left on the machine would just do more damage to her. She wasn't getting much oxygen at all at this point and so we painfully decided it was time to stop.
We held her in our arms as they turned off the machines.
I thought that nothing could be more painful than losing a full term baby like Jackson last year, but holding our baby in our arms as she died surpassed anything from his death. I am grateful that I was able to hold her though, as she left this world. We spent the rest of the day and the next morning with her in our room. She was beautiful. And words can't describe how much I'll miss her.
We are home now and just trying to deal with the what one doctor said was "lightning striking twice". According to everything they have seen they said that the two deaths are in no way related. We are awaiting more answers as the litany of tests ordered start to yield information over the next few weeks.
Thank you all for your prayers and thoughts on our behalf. We will need them.
Know that if you got this message it's because I have felt loved by you in my life and need to share my burden with you.