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.

I saw this on a blog of someone who has been very inspiring to me lately. It was very touching and I felt that I had to share it.

A Pair of Shoes

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don’t hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.

-Author unknown

5 pounds!!!

So we had an OB appointment and ultrasound on Monday. We got a lot of amazing 3-d pics of Cora!!! She is in a breech position right now. For the past few weeks, I've been thinking that I've been gently pushing her butt out of my ribs. Little did I know, it was her head. Its not a problem because I'm going to have a c-section anyway. At the end of the ultrasound, they told me that she is 5 lbs. 13 oz. I was so happy to see that she is growing well. She is staying in the 75th percentile. I was even happier to see that she is at least 5 pounds now! I know that ultrasounds can be off by at least a pound, but I'm very confident that she will be at least 5 pounds by the time she is born. 5 pounds is like a magic number to us. We've been told that it is a safe operating weight for newborns. They usually don't do the surgeries on babies until they are at least this weight. I'm so happy that I don't have to worry about that anymore!!!

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.

Thank You!!!

I wanted to write this post separately. I was going to write it last night, but I was so tired after writing the other one that I just had to go to bed.

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!!!

Love,
Erik, Jenn, Gabriel, and Cora Dahlgren

Very Busy Day at CAM and Children's

We had so many appointments and meetings today. It was all very overwhelming. We met a lot of new people and got a lot of new information. I felt fine all day, but when I got home, I was exhausted. Here is a recap of the appointments.

OB
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.

Fetal Echo
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.

CICU Tour
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.

C/T Surgeon
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.

Another day at the CAM building

We had a snow day at school today. That was really nice, because its a day of appointments that I won't be using one of my treasured sick days for. I have 44.5 sick days right now. With all of the snow days that we've had this year, I think I'll need about 42 days. I am trying to schedule things on days off as much as possible. I have a ton of appts. on the 16th which is President's Day. The next day is Pulaski Day. After that, I think I'm only going to use up 2-3 days. I'll be cutting it really close. I'm trying not to go over because they deduct my pay for every day that I go over.

Anyway, we had the ultrasound first today That was fine. I love seeing glimpses of my little girl! Erik actually got to go to this one, which was nice because he had to miss the past two. They are doing so many ultrasounds to make sure that Cora is growing normally, because a lot of times, HLHS babies don't gain a lot of weight. So far, Cora is already 3 lbs and 11 oz! She was only 2 lbs just 4 weeks ago! I just hope that she continues to grow normally.

After the ultrasound, we were able to go get lunch. We came back for the OB appointment. This was the 2nd OB appt. in two weeks! I had to go back this time to get my rhogam shot because I have a negative blood type. I am O negative, which is nice because I am a universal donor. Everyone can receive my blood. Erik and I are planning to go to the Red Cross as soon as we figure out what's going on with Cora. We would like to donate blood for her to use in case she needs it. Anyone else can donate too, and when it gets closer, I can give info for that. The blood would be earmarked just for her, but if she doesn't need it or can't accept it, then it would go to someone else.

On another note, we started setting up Cora's room last week. I am posting some pics of the paint job and the bedding. I fell in love with the bedding, and really love the way the paint colors went together. We took the border to Home Depot and did a color match. I was worried at first, but it dried nicely. I used some of the extra border to make outlet covers. It turned out great and was really easy to do! We don't have everything set up, but you can get a good idea. Don't mind the mess, it will be all cleaned up soon (we hope!!!)

Another round of appointments

We had an ultrasound, OB appointment, and fetal echo last week. The ultrasound showed that Cora is growing normally, she's already two pounds! We got some really good 3-D pics of her. The OB appointment was fine. He just wanted to check in and see that everything was progressing normally. He told me that I'm now on the "3,3,2,2,1,1 plan so I go back on the 21st. The fetal echo was normal also, nothing new. That is both good and bad to us. I keep having this hope that the sinusoids will go away. Its so hard to think about my little girl waiting around for a heart, with her health getting worse the more she waits. If the sinusoids go away or turn out to be small, then she can have the Norwood, Glenn, and Fontan surgeries. That would make me SO happy!!! The good news was that the valve betwen the left and right chamber is still wide open, allowing the body to mix red and blue blood and pump pruple throughout the body. If that closes, it gets really hard to treat, and she'd have a much smaller chance of survival. We were suposed to meet with a cardio-thoracic surgeon and have so many questions for him! Unfortunately, he was performing a Norwood procedure at the time, so we'll have to wait until Feb. We met with a neonatologist who will be caring for Cora right when she's born. He was so nice, and we really liked him!!! He asked all kinds of questions and seemed genuinely interested in everyting. He then wrote a letter to everyone involved explaining us and our family, Cora's condition, the complications, and the expected care that she will receive. The letter was so nice, I may have to scrapbook it later. He told us that right when she's born, we'll get a few minutes with her and then she'll be taken over to Children's for an echo, cardiac cath, other tests, and medication to keep her heart open and able to pump blood to the body. He said some things that made me cry for the first time in a long time. The closer we get, the harder it is to deal with everything. He told me that Erik's job will be running back and forth between Children's and Barnes, relaying all kinds of info to me. My job will be to stay in bed and try to recover from the C-section as fast as possible so that I can get up and go see my little girl. I lost it at that point. It is going to be so hard for me to sit in bed without being able to see Cora and make sure that she's okay. I know that it won't take long for me to get up in a wheelchair to see her, but its going to feel like an eternity. I also know that Erik will do everything he can to make I know as much as possible about Cora while taking care of me in bed. Its just really hard to think about right now.