Friday, April 3, 2009

Cora's Hello and Goodbye

Thanks to everyone with their thoughtful messages and prayers. It means so much to us at this very difficult time!!!

I know that many want to hear Cora's story. It is very hard for me to talk about all of it, so I decided to write a post and share with everyone.

On Tuesday, we went in for a c-section. Cora was born at 10:29 am. Everything went really well and there were no complications. I couldn't believe how many people were in the operating room with us. There were the surgeons, students, anesthesiologists, pediatric doctors, nurses, and Erik and I.

Hearing Cora cry for the first time is a feeling of joy that will never forget. I was SO happy to hear my little girl. Erik was able to cut the cord, and when she was cleaned up, the nurse brought her over to see us. She recognized our voices as we said hello to her. I was consumed with her beauty at that moment. I was SO happy! She really was a very beautiful baby. She weighed 6 13 and was 20 in long with big beautiful eyes. I remember thinking how small she was. My son was 9 12!

After we said hello to her, Erik and her went over to NICU. I sat in recovery for a couple of hours feeling so happy that I finally got to meet my little girl. They moved me to the antepartum wing, which is where I'll stay until Sat afternoon. Erik came to see me and spend some time with me in the room until I was able to get up and go see Cora. He told me how she was doing and how beautiful she was. He said that she was doing very well and breathing on room air. I was so excited to hear that because it meant that she was very strong!!! She had an echo and they said that things looked the same as they did with the fetal echos and they scheduled a cardiac cath for the next day at 9.

Around 3:30, I was able to get up in a wheelchair and go visit Cora. We spent almost all day holding her, which was wonderful! I went back to my room for dinner, but then came back to hold her again. We were able to get pictures and videos of Cora, which I will always treasure. She was still breathing room air, and her oxygen levels were good. She was on a prostglandin IV to keep her PDA open so that her heart could still mix blood and pump to the body. Her color was wonderful! She was a little blue around her lips, but that was all. This made me really happy because it meant that her circulation was still good.

Yesterday morning at 10, she went in for a cardiac cath. We tried to get over there early before she got her breathing tube in but we were too late to hold her again. They put it in around 8. We had a hard time getting over there because many docs and nurses were coming in to speak with us over at Barnes. I also had to wait for breakfast and medication, and it was all just very busy.

We said goodbye and let her go for her cath. We had to go back to Barnes to meet with a couple more people and have lunch. We went back over around 12:30 and thought they would be finished. Around 1:30, after the cath, they called us in to talk with us. Dr. Forrester informed us that during her cath, she had irregular heartbeats and went into cardiac arrest. They shocked her a couple of times and performed CPR for about 15 min. She had a hole in her heart and there was a lot of fluid and acid build up. They were able to stabalize her, but couldn't finish the cath. They didn't know how much damage there was to the brain or kidneys. This tore us up when we heard the news. I really didn't know what to think. I worried so much about the brain and kidney damage. I wasn't sure if she would be able to withstand anything else with her already weak heart.

I was SO upset because she was doing so well, and we had so much hope for her. We knew that it would be a very difficult journey for us, but we weren't really ready for anything of this magnitude. 1 in 1000 babies are born with HLHS. Before the cath, they told us the risks and said that there was a 1% chance of infection and many other things including loss of life. I kept thinking, "We already have a baby with this condition, with these odds, how could it possibly work out against us again?" It just didn't seem fair to us.

Dr. Gandhi then came in and told us more about what was going to happen next. They were waiting for an OR to become available, and then they could go in and repair the hole in her heart. When she recovered from that, she would need to have another cardiac cath. After thet, she would probably have her first of the three surgeries. They wouldn't want to do a transplant because of the damage to her kidneys. Anti-rejection drugs really take a toll on kidneys. Dr. Gandhi told us that her chances of making it through all of this were extremely low. Hearing all of this upset us so much and filled us with worry and sympathy for our beautiful daughter. We thought of all the pain that she would have to go through over and over again. It broke our hearts to think of all of that. We also thought about her quality of life if she were to survive this ordeal. We still had no idea of the amount of brain damage.

Dr. Gandhi understood our thoughts on this and informed us that if we didn't want to do all of these procedures, then we could opt to provide comfort care to her while she left us. We didn't have much time for a choice because she would have needed the operation right away. We decided to hold Cora while she left us.

Erik and I were able to hold her and they turned everything off except the ventilator. During the cath, she was on sedation medicine, and still needed the ventilator to breathe. After about an hour, we got my parents and sisters and had them join us. After seeing Cora for a little bit, my dad left to go get Gabe.

Everyone left the room and we got some time to spend with Gabe alone and tried to explain to him that Baby Cora was very sick and wouldn't be coming home with us. We told him that instead of coming home, she was going to go to heaven. He listened, but I don't think he understood. He did know that Erik and I were very upset and laid his head on Daddy's shoulder when he saw me crying. We had presents for Gabe and Cora. Cora gave Gabe a train for his train set at home. We was very excited to see that and told Cora thank you. Then, he gave Cora some toys that we had picked out for her. He played the music on one of the toys and showed her how the frog worked. It was all so sweet and brought countless tears to my eyes. After that, we left Cora with my mom and went to get dinner with Gabe.

We came right back to hold Cora again. The nurse had just went out to get us. Erik and I were alone with her for the rest of the time. They increased the reversal drugs for sedation to try and see if she could breathe on her own. Around 8pm, we the alerts on the machines for her O2 sat levels were going off much more frequently. Dr. Fehr came in and told us that Cora was gone. Her PDA had closed and stopped the heart from pumping blood to the body. She left us very peacefully and it was a beautiful moment. We didn't want to let her go. Dr. Fehr tok out the breathing tube and disconnected some lines so that we could continue to hold her. We didn't want to let her go! We stayed for a while, holding, rocking, stroking her head, hands, and fingers, and cherishing every moment.

We went to sit in a room with Mom, Dan and my sisters while the nurse packed up our things in the room for us. She also took some pictures and dressed Cora in an outfit that we had there. We hadn't planned on using that outfit for this purpose, but we're glad that we had it there. We then went back to Barnes. We sat back to start a movie and within 15 minutes, passed out from exhaustion.

Wednesday was spent starting arrangements and making plans. We deicded to have the visitation and services for Cora at a funeral home that is very close to our house. We aren't sure on times yet, but the visitation will be next Wednesday, and the funeral will be on Thursday. I can have more information on all of that soon when we find everything out. I'm still at Barnes until Sat. I can't wait to get home and spend lots of time with Gabe and get everything planned.

10 comments:

Kari said...

This must have been very difficult to write. Thank you for sharing this with us, for those of us not nearby it helps us feel like we're there with you.

Cora is looking down on all of us in a special place in heaven. My thoughts and prayers are with you, Erik and Gabe.

Mary Nee said...

Jenn...I wish I knew what to say to comfort you, but I know I cannot find the words to even come close... Cora will forever be a light in your life, her memory will live on in you, in Erik, in Gabe, and in the hearts of so many of us that she touched. I truly believe she has blessed this world in more ways than we will ever know.
You, Erik, Gabe, and your entire family are in my prayers.

Anonymous said...

Jenn,
My thoughts and prayers are with you, Erik and Gabe right now.
God Bless,
Dawn

Sionnain said...

Oh, my heart goes out to all of you. Thank you for sharing this with us, as hard as it must have been. I'm thinking about all of you and you're in my thoughts.

--Shannon

Beth said...

Hey sweetheart. I am so sorry that things had to be this way. Just know that I love you dearly and if you need anything just call me. <3

Noreen said...

Jenn,
We are so very sorry. We've been following your blog and are so inspired by your openness in sharing all that has occurred to include opening your hearts to us. If there is anything we can do, please don't hesitate! You are in our hearts!
Noreen & John Petty

Anonymous said...

I cannot imagine what you are going through. I will pray for you and your family.

Holly said...

Jenn,
I thank you for sharing Cora with me. She is such a wonderful little baby! I know these next few days will be hard and I will be saying many prayers on your behalf. Like I said before, hold Cora as much as you can. You will be glad you did later.

The Woollard Family said...

Thank you for sharing Cora's life with us. You're very strong, like Holly!

♥Heather

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