Sunday, August 24, 2008

Welcome Home






Our day has come. Carsen came home Sunday Aug.17th. Although not without a few hurdles. As I was at the hospital getting passed off on all the teaching by his nurses my fears somewhat intensified. I realized that I did not know Carsen's cues and routines very well. His situation has always been different than his sister's and it was even more unfamiliar to me since he began staying at Primary Children's. Feeding time was the scariest. Carsen eats a lot slower than Cierra and still had difficulty with the sucking/swallowing/breathing routine. The couple times I had fed him from a bottle he choked on his food and his heart rate dropped significantly. Well, I don't care much for the color blue or purple on my little boy. The exercise of rubbing his back and patting him vigorously to breathe was unnerving. I really questioned in my heart if Carsen was truly ready to come home. After talking to the doctors and nurse practitioners they convinced me that "he" was ready. But, was I ready? That was the question. With a stomach tied in knots I decided to trust the doctors. Besides, I really didn't want to wait one more day for our little guy to come home.
Well, to our surprise Carsen has done amazingly well. Why should we be surprised really. Carsen has impressed us all each step of the way. He's eating, sleeping, and growing very well. We couldn't be happier with his progress. Carsen and Cierra's Pediatrician is wonderful. When she met Carsen this week she admitted that she was very pleasantly suprised. When I had told her about Carsen's history she expected him to look and act much different. That was of course great to hear.
Carsen and Cierra have brought so much to our lives in such a small amount of time. They have been on this earth for four months now and I feel like I have experienced more fear, pain, joy, anxiety, and desperation in that time than in my entire life. I don't think the spinning of my world has quite stopped yet. I think it will continue to slow and rebalance as time goes on. When I sit in quiet moments holding them close I look at them and realize how much this has been so much bigger than me. It's much bigger than my emotional, physical, and spiritual capacities to handle. I look at them in awe and in wonder. I am totally overwhelmed and humbled by them and their existence. That's when I realize I have been carried many times through this rough journey. To have made it this far with so much to hope for. I know that we have been blessed. I know that things could have turned out very differently than this. There is definitely a path and a purpose for these little miracles. I am humbled and thrilled to follow and participate in that path. They are special little babies. Amazing gifts from a loving Heavenly Father. Of all the gifts one can receive, this one will have me grateful for eternity.

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Friday, August 15, 2008

Is the wait finally over?

I have just arrived at the hotel in Salt Lake. We are holding our breath that Carsen doesn't. The doctors have promised that if Carsen doesn't have any more Apnea episodes by Sunday he can come home! Carsen has had to go seven days in a row with no actual Apnea episodes. (When he forgets to breathe.) Sunday will be day number seven. We have learned to be a little superstitous as the doctors and nurses are. They don't like to mention it around Carsen because they think he is listening. For example, last Friday Brandon and I headed for Salt Lake with the intention of bringing Carsen home on Monday. Monday being his seventh day with no episodes. Well, sure enough about an hour into the drive the Nurse Practitioner calls and says "Sorry he's not coming home on Monday." Carsen had just had an apnic spell. That started the clock again back to day zero. We were sooooo dissapointed. The car was packed with all his things and we felt totally prepared to bring him home. We were sad but assured that if he's not ready then it's not the right time. We certainly don't want to push him. He needs to take as much time as he needs to get well. So, here I am back in Salt Lake trying not to hold my breath. (And Carsen too!) We hope your ready buddy.

Tuesday, August 5, 2008

A little less sleep



Cierra has been home now for seventeen days. Today Cierra had a visit from a home health care nurse. Her Pediatrician is hoping that her check ups will work out better this way. It's great for me. Not having to bring Braden, Gracie and Cierra plus monitors to the doctors office is much easier. We also thought this would keep her from getting any bugs that are going around. Well, don't count on that! This past weekend I got a very nasty stomach bug. I was so devastated. I was terrified that Cierra might get it. I felt much better by Sunday. Well, Sunday night it's Brandon's turn. Poor little Cierra is rooming in with a bunch of sickies running back and forth to the bathroom all night. So far she is doing just fine. Thank goodness for hand soap and hospital grade hand sanitizer!

Carsen has been through a lot the last few weeks. He was moved to Primary Children's in Salt Lake. We are very sad that he is no longer at Mckay-Dee in Ogden. For one, my Brother and Sister-in-law are not as close to him. And two, WE LOVE MCKAY-DEE. They were absolutely wonderful. I cannot say enough about those wonderful doctors and nurses. We miss them. Well, Carsen was moved to Primary Children's to have a permanent shunt placed in his head. This allows the spinal fluid that was building up to drain and reabsorb into the body. His recovery has taken longer than we all thought. He struggled with coming off the ventilator after surgery. Carsen just wasn't quite ready to be breathing on his own again. He also had a fair amount of water retention. This is normal but certainly was disheartening for me to see. It's hard to eagerly want to see your little boy after such a surgery and not even recognize him. Finally just a few days ago Carsen was extubated and back to a nasal canula. The swelling has gone down significantly and he is doing quite well. He is just starting to take his feedings by bottle again. We hope he continues to do well. We miss him terribly. It's sooo difficult to have Cierra home and Carsen so far away. We are so torn between them. The best situation for Cierra is to stay home as much as possible. But Carsen needs us and we need Carsen. We are so desperate for the day that he is ready to come home. We miss you little buddy.

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