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