There is a good reason it has been a whole week since I’ve made a journal entry. Cierra has been doing really well and will be off of her internal respirator soon. She also has no IV’s of any kind. She can take all of her medicine through her feeding tube and is eating breast milk every 4 hours. Carsen is the same as far as not having any IV’s, and eating but his lungs aren’t as strong as Cierra. He is on a regular respirator right now to. Good things are happening for both of them.
Despite all the good news there is also the worst news. I hate even writing it down in this journal. On Wednesday Heidi went to Ogden with Braden and Grace to be with the babies. On Thursday she had a meeting with a neurologist whom had been monitoring Carsen’s progress with his brain bleed. After their meeting she called to tell me about it. The absolute worst nightmare of my life is now unfolding before us.
Carsen has very little brain matter left, and what is left is possibly not functioning brain tissue. He has only a 5% chance of being able to swallow, or even cough. And if he miraculously falls into that 5% window there is no telling how long he will live. His projected functionality is that he will never be in a wheel chair only able to lie in a bed. The horror story goes on and on, and the worst part is that Heidi and I have to choose to keep him alive like that or let his spirit go home to Heavenly Father.
Next time I hear someone say that you will never be tried with something that you can’t handle I will let them know how vague that statement is. I believe it is true, but it seems to provide a false sense of security about possible trials in one’s life. Anything can happen at any time no matter how prepared you are. I guarantee I am not able to handle this trial at all, nobody could be. This statement should be quoted instead, “No matter how overwhelming your trials may feel God will always be there to help”.
Heidi and I still haven’t made a decision at all. We are still praying, and hoping to make sense of everything we’re going through. Whatever decision we make won’t be a wrong or selfish one. We don’t care how hard it will be on our lives to take care of a severely disabled baby. We just don’t want Carsen to suffer any more. But we love him so much we don’t want to let him go either.
Today Carsen Weighs 2lbs. 7oz and Cierra's weight is 2lbs. 3oz. They both look so beautiful and peaceful. Cierra got her ventilator changed out and now all she has is the tubes in her nose supplying her with oxygen. She has such a cute little face, despite her Mothers demands I can’t help but keep calling her my little monkey.
Our window of time to decide to keep Carsen on support or take him off is close to over. Heidi and I went to the Temple in Vernal yesterday and did some initiatory work and then sat in the Celestial room praying and talking. We both had amazing experiences and felt very strongly about what Heavenly Father wants us to do. We also felt and saw visions of just how wonderful little Carsen is. He is such a special spirit that we feel honored that he is part of our family.
We then asked Braden and Grace if they wanted to come with us to Ogden or stay with Grandma and Grandpa Eskelson. They both wanted to stay there so Heidi and I drove out last night. We got here at 12:30 and came into the NICU room to hang out with Carsen, and Cierra; we left at 1:30. The nurses had us a room on the unit to sleep in, it was the same room I slept in that first night. Neither of us slept very well.
When we got up I came straight into the NICU unit and held onto Carsen for about two hours. I really felt like we were able to feel each other’s spirit so I started talking to him and letting him know how honored we all feel to have him in our family. I let him know what was going to happen today and I think he knows. He also knows that he will be OK and he isn’t scared for it to happen.
Heidi’s MOM got here today to see and hold the twins; she got here really late last night. She then went straight to the hospital to see them. The hospital called to ask us if she was ok to come in and see them at 5:30ish. She really wanted to see them, I am glad she got to do so after helping Grandpa Redfield through his passing.
One of the nurses at McKay-Dee hospital takes really professional looking photos for people whom are going through tough times like us. She came in today with all of her stuff and took some really precious photo’s of Carsen and Cierra together. We can’t wait to see them.
Today we had a meeting at about 7:30PM with a couple of the doctors and nurses that care for the twins. The doctors gave us some really good news about Carsen. In a lot fewer words than it took them to explain to us we were told that this decision is no longer ours to make. Carsen has progressed and healed so quickly in such a short amount of time that we no longer have a say when he will pass away. His lungs which looked so scared up and cloudy are now clear and full and healthy. His heart is beating perfectly, and he is pooping like a pro again. All that I blessed him with on Friday happened. His brain is still really badly damaged, but everything else is functioning perfectly.
It feels so good to know that Heavenly Father was really there the whole time. He answered all of our prayers 100%. Now it is up to Heavenly Father when to call him back not us. It was so hard to think about how to tell him goodbye and then tell the doctors to pull his breathing tubes out and watch him die. Such a decision would have haunted us forever. We did have to issue a DNR (do not resuscitate) for Carsen if he were to have a turn for the worse. And that decision was not an easy one either, but so much easier after what we went through to decide if and when to take him off life support.
I have an idea of what Abraham went through when he was told to sacrifice his son Isaac. I thought about Abraham a few times as we were being faced with this. And I prayed every time that it would end the same. I feel like it did; our faith was tested and Heavenly Father blessed us immensely after the test.
This is one trial I will never be thankful enough for. The faith it has built in me I would never have imagined feeling this close to the Lord. I am so humbled by the amount of love and support everyone has shown to us. And the Holy Spirit has been there every step of the way, every tear that was shed.
This last 10 days has been a horrible one for the family, mostly Heidi. She is sick with what seems like 6 different bugs. Grace has been sick, Braden has a cold, and I am getting over one of the worse stomach bugs I have ever gotten. I think all the stress coupled with lack of sleep and being on the go so much is all catching up to us. We are going home together for a week to try and recuperate.
On Thursday Carsen got transported down to Salt Lake City and admitted into the Primary Children’s Hospital for surgery. They are putting a reservoir tap in his head to drain some of the fluid pressure off at a natural rate to see if that will improve his situation. The surgeon whom preformed the operation told us that everything looked better than he expected. He also gave Carsen a CT scan and was expecting to see some stroked brain tissue. He was surprised to see that there wasn’t any. The Doctor said that doesn’t change the prognosis on his possible disabilities but it is a good sign. We will be able to see in the next few months if the surgery did very much depending on how fast Carsen gets off the internal respirator.
Today Carsen weighs 2 lbs. 13 ozs. And Cierra weighs 2 lbs. 10 ozs.
Today we were told that Carsen was extabated, which means that his internal respirator has been removed and he is breathing with a nasal canal tube now. He may be reintabated later but it is good to see he is progressing. I hope that means he is feeling comfortable right now. We will be going out to see them both today; we are all feeling a lot better and excited to hang out with them again.
Carsen now weighs 3 lbs. and 1 oz. and Cierra now weighs 2 lbs. and 13 ozs.
Friday, May 30, 2008
Posted by Ashlee at 10:35 AM
Thursday, May 8, 2008
Friday, May 2, 2008
Today we were notified that Cierra had a tough time with her blood pressure last night. They put her on dopamine to keep it up. The Doctor is positive it is her ductus artery; the same one Carsen had surgery on. They are putting her in surgery later today for a ligation surgery.
….A FEW HOURS LATER…
Cierra’s Doctor just called me back and said everything went perfectly. He also said that while he was looking around inside her chest cavity that all of her organs looked great…really healthy.
Today we were in Ogden visiting the babies; Braden and Grace were at the hospital with us. They just wanted to see where Mom and Dad were going all the time. Braden kept asking to go see the babies. He is too young right now so the nurses won’t let him go back. Which is alright because he would play with everything in there that goes beep, there are a lot of machines beeping too.
Last night we blessed the babies and gave them their names. It was such a wonderful and spiritual experience. I felt so comforted and gave both of them all the wonderful blessings that they deserve. Uncle Mike and Uncle Kyle were there to help.
Heidi’s brother Kyle has been able to stop in and see the babies while he is at work. He has also given them both blessings when we weren’t able to be there. It is so very comforting to know that he, and Naja are there talking to the twins every day.
Cierra is doing really well today. She is on a jet ventilator, which is the specialized ventilator for premature babies. When she started her oxygen needs were at 85, tonight her needs are at 30. So her little lungs are getting stronger every day.
Carsen is still having trouble with bleeding on his brain. His right side is bleeding pretty badly and it is swelling and causing the left side to get crowded. The doctors aren’t worried too much right now but they will be measuring his head every day to make sure it doesn’t swell to fast. Up till now his head hasn’t swollen at all so they think that the bleeding has either stopped or it is so slow that things will get better and they won’t have to drain any brain fluid to reduce the swelling. It is an answer to our prayers, one more of the many miracles that we all have been blessed with.
Both of the twins are eating Mommy’s milk every 4 hours. Cierra gets 3.5ml every 4 hours and Carsen is eating 7ml every 4 hours. If they are tolerating it well that amount will go up every 12 hours. Right now Carsen weighs 2lbs, and Cierra weighs 2lbs 2oz.
We are getting so much support from everyone in the community here, and our ward back in Eagle Valley. I have heard so many people putting our, and the twins names on the prayer rolls at the temple that they must be on them 30 times. I truly feel that spiritual strength from everyone’s faith and all the positive thoughts for our benefit.
Braden and Grace got to go back and see the twins through the window today. They brought them matching little stuffed animals to sit on their incubators. But Carsen and Cierra need Braden and Grace to take care of them until they get home. They were so good, the nurse made them wear little face masks with Disney characters on them and fold their arms. The mask was too big for Grace she couldn’t see over it completely so it didn’t last long on her but she did keep her arms folded and so did Braden. Braden loved seeing their little feet moving around, he was so excited. He was saying “Which one is Carsen, Where is Cierra, I see his feet daddy, Look there’s Cierra’s leg.” When I told them to say goodbye Braden and Grace stared kissing the window and saying “I wub you Arsen, I wub you Yierra” So cute. I was really glad they got to see their brother and sister it really helped make sense of everything to them.
More pictures to come and Thank you for all your support and prayers!
Posted by Ashlee at 12:56 PM
Thursday, May 1, 2008
Heidi has asked me to post this scripture to express some of the thoughts & feelings she has had in the past couple weeks:
16 Yea, and even all they who wrought miracles wrought them by faith, even those who were before Christ and also those who were after.
17 And it was by faith that the three disciples obtained a promise that they should not taste of death; and they obtained not the promise until after their faith.
18 And neither at any time hath any wrought miracles until after their faith; wherefore they first believed in the Son of God.
Carsen has had a couple blessings now and so have Heidi & Brandon. She said that after a couple of the blessings, these scriptures related most to some of the promises that were made.
She has expressed fears for the twins as well as hope, which I think is what we all feel along with her. Thank you for your continued hope and prayers.
Posted by Ashlee at 1:39 PM