Monday, April 1, 2013
Four years ago, April Fool's Day turned into one of the worst days of my life. I was faced with the decision that no one should ever have to make. Erik and I had to make the decision to put our newborn daughter through multiple surgeries and pain or let her leave us peacefully and happy. We chose to hold her in our arms as she quietly left us. This decision was extremely difficult for us to make and we only had about 15 minutes to decide. We didn't know how much brain damage there was after 15 minutes of CPR during her heart cath. Also, she'd have to go directly to surgery and her chance for an implant (which was her best chance) was gone. We didn't think that her quality of life would be very good and didn't want to put her through that kind of pain. Not everyone would make the same decision that we would, but we don't regret it. We were able to hold her and her brother Gabe was able to come see her and kiss her goodbye. Having all three of us there to say goodbye to her meant the world to me.
Each April Fool's Day since then has been a difficult and emotional day for me. I'm not really in the mood to play pranks a whole lot, but I enjoy doing them with Gabe and I'm sure I'll enjoy doing them with Maddie when she's old enough. I'm just not into it anymore with anyone else because of the memories. This is actually the first year that I have gone to work on this day. I couldn't allow myself to call off of work this day because our extremely high stakes test is tomorrow and I couldn't deny my students another day of review. Work was a nice distraction. Each year, things get a bit better.
The first few months were almost a complete blur to me. I went through the motions and put on a fake smile when necessary, but there were few real smiles. It's silly because he was only 3, but Gabe really helped me get through those days. He was the only one who could bring a smile to my face at times. Erik was also a light in the darkness for me. He was really the only one that I knew understood what I was feeling. I felt comfortable enough to share anything that I was feeling with him and he listened. Erik has really been my rock ever since we started dating, but it went to a different level after Cora was diagnosed with HLHS. He is an amazing man, and I'm so in love with him!!!
It was really rough at first, but I can finally say that my life has changed for the better since having Cora. She touched more lives than I could even imagine touching in my entire lifetime. All of this was done in just nine months of my pregnancy and a day and a half of life. She helped me to stop taking things for granted. Life is so fragile sometimes. You really have to enjoy the moments that you have while you have them. Cora also helped me to realize my own strength. A co worker told me once that I'm a really strong woman. I didn't believe her at the time because I never saw that strength in myself. After learning about HLHS, I found a strength that I never knew I had in me. This strength allowed me to face the doctor appointments with hope, talk with friends and family about Cora's condition, inspire others, and deal with comments from people that were hurtful to me but not intended to be that way.
Cora was beautiful and loved by so many. I treasure the few moments and small amount of video that I got with her. I am still humbled by the support from friends and family. I can't believe the amount of people that were there for us to help out in any way they could. Friends and family had "Cora roses" planted in our back yard, brought meals, surprised us with an angel food cake, took the time for phone calls, wrote notes, told me funny stories to make me laugh, and just let us know that were were loved. That meant the world to me, and I'll never forget it!
I think of Cora often. I don't think a week will ever go by where I don't think of her. I still notice children that are about 4 years old, the age she would have turned yesterday. I wonder what kind of girl she would be, what kind of life she would have, and so many things. I'll never see her high school graduation or wedding. I never got to throw her a birthday party or watch her open her Easter basket. There are so many experiences that I missed out on, but I am extremely thankful that I was able to spend a few precious moments with her.
Goodnight Baby Cora
Friday, April 3, 2009
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.
Wednesday, March 18, 2009
A Pair of Shoes
Friday, March 6, 2009
The OB appointment was just a check up, everything is normal. They have scheduled me for a c-section on March 31st. If Cora decides to cooperate, that will be her birthday! I say this because I have this strange feeling that I'm going to go into labor before this date. Also, when shes born, we'll get much more info about what route to take next. It is so frustrating not knowing whether she'll have the surgeries or a transplant. I am okay with both options. They each have their own pros and cons, but overall, they are about the same in immediate and long term risk.
I am just so excited to finally be able to hold her in my arms! I can't wait!!! Gabriel can't wait to see her too. Somehow, he thinks that Cora will be born and come play with his instruments and toys. He even played with my belly all day Saturday, pretending that it was Cora. He can't wait to meet his sister, and I'm sure he'll be an excellent big brother.
Lastly, we have finally decided on a middle name for our little girl. Her name will be
Cora Rachelle Dahlgren. The first name was so easy to choose and seemed almost obvious to us. We love the meaning behind it. It was hard for us to agree and decide on a middle name that went with Cora. There is no significance to Rachelle, but we like the way it sounds with Cora.
Wednesday, February 18, 2009
I want to thank everyone for their prayers, nice thoughts, and wishes as we travel down this road. At times like this, I really see what an amazing family and group of friends that I am blessed with. There is so much support and I'm not sure I could get through this without it. Everyone has been truly wonderful through this. Thank you, thank you thank you!!!
Erik, Jenn, Gabriel, and Cora Dahlgren
Tuesday, February 17, 2009
We had our OB appointment first. She just wanted to check up on everything and see how I was doing. It was a normal, routine appointment. She said that my c-section would be scheduled for March 31st. I just have to wait and hear back for a time.
After the OB appointment, we went over to Children's for a fetal echo. This time I met a new pediatric cardiologist. Its amazing to see how different doctors can have such different takes on the same thing. This time, Cora cooperated more than ever. I think its because she has less room to move around. The other times, the ultrasound tech had to chase her around and hope that she stayed still for a min. They were able to get a good look at the sinusoids for the first time. They always knew they were there, but it was hard to see them. The cardiologist explained everything so well and it was great to hear all of that. He explained more about the sinusoids, how they developed, and why they cause problems with the surgeries. He also explained how all of the surgeries worked. I didn't really understand this before. I never knew that the right side will be pumping to the body instead of the lungs. The blood that needs to go to the lungs will bypass the heart and go straight to the lungs. Its all pretty amazing to me. We still won't know if we can have the surgeries or a transplant until they do a cath and put dye in her heart to see exactly what is going on.
After taking a break for lunch, we went up to CICU to see if Wendi could give us a tour. She was someone that my mom recommended to us. She was so nice and answered all of our questions. It was nice to see where Cora would be spending most of her time. We walked in, just wanting to take a look around and ending up asking a ton of questions. We found out that most of the shirts that I got for Cora won't work until we get her home. I don't know why I stress about the little details! I guess I have to go shopping for a few more things. She can't really have things that go over her head. Its hard to get them on. Wendi was really nice and patient with the two of us. I'm really glad that we did this tour. Knowing more made us feel a lot better. After the tour, we went down to visit with Mom and give her an update. She was working today, but was kinda busy.
After talking with mom and checking out the Ronald McDonald room, we met with Dr. Gandhi, one of the cardio/thoracic surgeons. There are only two doctors at Children's that do the surgeries and he is one of them. He explained more about the surgeries and told us why Cora's condition is more complicated. HLHS is the most complicated congenital heart defect and Cora has problems with the mitral and aortic valves which make it possibly the worst kind of HLHS to deal with. This is why she might need a transplant. He also told us that there were 20 HLHS babies in the hospital last year. Of the 20, they only lost one. He also said that there were good and bad things about both a transplant and the surgeries. That made me feel a lot better. I had been thinking that a transplant would be a bad option, but the babies have about the same survival rates. Also, there is an average wait of only about 6 weeks for an infant heart because they ignore blood type and they only use the hearts in extreme cases. They are doing more surgeries now and are not needing as many hearts as they had in the past. I was glad to hear that because I had worried about Cora waiting a really long time for a heart. We were VERY impressed with Dr. Gandhi. He was so nice. We would really love for him to do the surgeries on Cora. I'm sure the other doctor is great too, we just haven't met him yet.
At the end of the day, we left the hospital feeling much better than we had in the past. We got so much information, but I was glad to get it. The doctors were very patient with us and explained everything. I'm the type of person who needs to have all of the facts on everything and it was really nice to finally get some straight answers rather than generalizations. This was the busiest day we've ever had at CAM/Children's, and I don't think we'll have another one like this until Cora is born. We have one more ultrasound, one echo, and 4 more OB appointments. These will probably all be routine, just checking up on things. I'll still try to keep everyone updated on things.