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Back and Forth

You might have guessed by this posting's title that things are never the same. What I mean by that is that Carsen (the one who likes to keep us on our toes) isn't sure if he wants to eat again. Lately, he has a good week of eating and then a bad one. Well, we are lingering in the 'bad one' longer than I'd really like. Carsen eats about half of his feedings when he gets in these ruts. So far he continues to gain weight which is obviously the goal but the weight gain isn't as much as his Doctor would like. He needs the raw calories more than anything else and that has been our focus. Trying baby veggies, and fruits is an idea but doesn't quite bring the calories we get from formula. So, unless Carsen decides to increase his appetite our options don't look that great. We would be looking at a feeding tube. Obviously I'm not thrilled by this idea as you could fill his lungs with formula if you don't have the tube placed just right. They would teach us how to do it but still not very comforting. I can tell you that this is probably the single most stressful thing I go through everyday. The greatest contributors to brain and lung growth in the first year of life is nutrition and oxygen! This is huge for these little babies. We are already seven months into that first year. That is probably why I have literally found white hairs on my head. It weighs on me every hour of the day. Thank goodness these babies don't understand the stress they cause. So, for now we get gray and keep on praying. I think I'm learning this is a motto for all parents. We hope Carsen decides that he likes food as much as his Mommy and Daddy do. O.k...... like his Mommy does.

Finally an update that doesn't stem from a worried place in my heart. Things are going quite well. Of course that doesn't mean life has slowed down to the speed of less than 90 miles an hour. But hey, once you get used to that speed of life it becomes normal. I think Brandon and I wish we could make multiple clones of ourselves or at least pay people to do the things we never have time to do. We have been fortunate enough to discover that our next door neighbors kids are quite good little worker bees. I say that kindly. Brandon has recruited the two older sons the last month or so to help put in our spinkler system. They were a great help and a lot more affordable than some of the bids we've gotten. Just today I decided to enjoy a couple hours up town all by myself. What a treat to get a break. When I got back the two sisters from next door were in my kitchen cleaning and doing dishes. Hallelujah! What a wonderful surprise. Because yes, even though my house was a mess from top to bottom I did leave to have some time for myself. Brandon asked the girls if they could come help do some cleaning and they were anxious to help. They were so sweet and helped us out a ton. Those kind of surprises are becoming my favorite these days.

O.k., enough about me let's talk about those babies! Carsen has an Occupational Therapist that comes to see him twice a month. He came last week to work with Carsen. So far he has been very pleased with Carsen's abilities and progress. At this point he has some concern about Carsen's left arm movement. Now, if you know anything about where Carsen was three or four months ago you know that that is nothing. Of course, Carsen is still very very young. We will not know definites for awhile still. But, we have so much reason to celebrate every day with him. And of course his sister too. It's so hard to really grasp the reality of his miracles sometimes. He has so far conquered soooo much. And boy let me tell you he is not done. Everyday he amazes me. I mean every single day. To think that the sadness and pain we used to feel for him would ever begin to fade is amazing to me. Especially this soon in his life. We used to hear such dim and hopeless things from Doctors. Now everyday that I have him his light and his strength and personality just shine so bright. He is very much full of life and energy. Even though he is a very laid back baby you can't underestimate his spirit and vitality. He brings so much to this family. He and his little sister are priceless little gems. We wouldn't know what to do without them. What a joy they are!

Life is Crazy

This is looooong overdue! Well, as you can imagine life has been a little overwhelming for the Eskelson household. I don't even have time to call my own mother anymore! For me that's pretty bad. I wish I could log everything that has gone on over the last couple months but I'm not even going to try. Sorry. One of the main reasons I had not had time for an update after Carsen's welcome home was because of a very frightening experience. Carsen had only been home about two weeks when he unexpectedly stopped breathing. I can't even put into words what that was like. After stimulation (like the nurses had shown me before) there was no response. I had to start breaths and compressions. Carsen thankfully, started to breathe again. But did not totally recover. He started to slip into it again a couple minutes later. I called 911. They took Carsen to the hospital almost right away. He continued this cycle off and on for a couple of hours until they got him on the ventilator ready to board the Life Flight helicopter back to Primary Children's. Carsen was put through many tests and Dr.'s concluded that it was neurological. They couldn't find any other cause. He is now on a medicine that helps stimulate the area of the brain responsible for breathing. He has done really well with breathing since then. The Dr.'s hope by about ten months of age he will outgrow the risk of not breathing. I won't even go into the realm of emotion that a mother has to go through when enduring something like this. It's undescribeable. It will forever be burned into my mind and my heart. I just pray I will never have to go through that again.

So, ever since then I have been obviously overwhelmed and preoccupied with my responsibilities. These two little angels are quite a handful. But I also must add JOY FUL. They are such a treasure in our lives. They are an immense amount of work but sooooo worth it. My bond with these two continues to grow when I think how can it get any stronger. Carsen is the most wonderful cuddler in the world! How lucky am I! You can just feel his love for you when you hold and love him. And Cierra what a spitfire! She is amazing. She has so much life and vitality in her. And boy does she know how to lay it on. Her smile will nock your socks off! Watch out. You might get sucked in.

I realize this is a very short update for all that has happened. I really didn't want to go into tons of detail about Carsen. We are trying to get past that day and the weeks that followed and enjoy the now. Thanks once again for the continued prayers and thoughts from everyone. It does us so much good. We have the best family and friends in the world!

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.

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.

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.

Miracles

Well, it seems like it has been forever since our last update. There is so much news to share. First may we say "Welcome Home Cierra!" Yes she did it! Last weekend Brandon, the kids, and I made the trek out to Ogden to pick up little Cierra. We left the kids with their wonderful Aunt Naja and Uncle Kyle while Brandon and I stayed the night at the hospital. They call it rooming in. We were able to be with Cierra all night in a family sleep room next to the NICU. We had her all to ourselves for the first time since she was born on April 13th. She was on a four hour feeding schedule which gave us a little more sleep then we expected. Although sleep was often interrupted with the monitors that they were sending her home on. She did really well and seemed to be ready to go home. The next morning we were sent to a CPR class at the hospital. That was a little frightening for me. I didn't like the idea of maybe needing to give CPR to my little newborns. It was definitely good to learn but I hope Carsen and Cierra never need it. Later that day we were trained on Cierra's oxygen equipment and monitors. Again, a little intimidating. Finally, around 5:00pm Cierra was discharged. We drove straight to Uncle Kyle's house to pick up Braden and Gracie. The cousins were so cute when they were finally introduced to their newest girl cousin Cierra. Then to see the look on Braden and Gracie's faces was so neat. They had this look of amazement mingled with a bit of reverence. They realized how special it was to have a newborn baby as a part of their family. Our wonderful Aunt Naja got a few moments alone holding little Cierra. I knew how special it would be for both of them because of the bond they had formed since the babies had been at the hospital. Aunt Naja was so kind to fill in on many occasions when Brandon and I could not visit the babies. She was able to give them the love we wanted to be there and give. Thanks Aunt Naja. Well, she is ours now and we hope she won't have to see the walls of a hospital room for a long long time. She is on a very minimal amount of oxygen which we hope doesn't last too long. She takes most of her feedings from a bottle. We are still nursing but need to take it slow. She had her first visit with her Pediatrician on Tuesday. Cierra weighed 6lbs. and 1.5oz. She is doing well and sleeping a ton. She is so precious!

Well, most of you already know about what we refer to as our 'miracle'. You may be thinking, "which one?" I'm talking about Carsen. Many days have gone by that I've thought about how to write about this. I still don't know. It's a bit sacred to me. I don't have the words to explain really. Carsen has been given a wonderful gift. A gift that is sometimes easily taken for granted. It's so overwhelming to me that words cannot describe how I feel. Carsen had a severe brain bleed on the right side of his brain that devastated his entire brain. After many head ultrasounds, Doctors gave us the worst possible outcome. There was little hope for Carsen and his future. We were then asked to make the most difficult and heartbreaking decision any parent would have to make. After much prayer from many faithful hands we were kept from making that decision. At the time we did not know why the course of things seemed to change. This decision was no longer in our hands. We were simply overjoyed by that. That was an experience we never imagined we would be faced with. Having to ask yourself if you should let your baby be taken off life support before they ever even experienced it was gut wrenching. It caused us pain in every inch of our body. Life had just stopped for us. Everything else meant nothing and we didn't know if it ever would again.
Somehow, someway a miracle happened. Our little boy that had literally no brain left was given a gift. A gift and chance at life. I say gently... it is there. For some reason Carsen's future is not the same. It is not what it was. I know where these gifts come from and I am so humbled. I believe He had compassion. Compassion for a broken and devastated family that tried to stay faithful and trusting. We know that Carsen was blessed. We are humbled beyond words. We believe that miracles are and always have been possible. I say it gently... it is there. We say "thank you" to everyone who prayed with deep sincerity for our little boy. He has recieved this gift because of the faith and prayers of many kind and wonderful people. Carsen has a real future ahead of him now. We can't wait to see and be apart of it. What a gift to us. Everything means everything to us now.

I say it gently...it is there!

Getting Bigger!

Yesterday Renee the babies developmental specialist called to give us an update. Not much was new. She said Carsen had a little higher tone than a week ago. That means his legs and arms were a little tighter than before. She said he still is in the normal range just at the high end. She also said it may have been because he was a little agitated. The nurse had just suctioned his nose out before Renee's visit. This could be the reason why his tone was higher. But it may also be related to his brain issues. He did a little better at tracking this time. His eyes followed her just a little. Renee said for his age and prematurity that it was very normal to have minimal tracking. Carsen has been taking about half of a single feeding by bottle, every other feeding. He is practicing and doing pretty good. When I am up in Ogden we practice nursing as well. He has done very well. The first time a week ago Renee observed him and was amazed at how well he did. She actually started to cry she thought it was so great. She's a wonderful lady. The next day after 20 minutes of decent nursing I attempted to burp little Carsen. The sweet little guy nuzzled right up into my neck with his cute little arm on my shoulder. It was so wonderful to feel him really want to be close to his Mommy. After awhile Brandon got up to take a picture of us and noticed his eyes were wide awake. He lay against me perfectly calm and still with eyes wide open. It was a special experience for me. The babies are rarely awake and not for very long. I felt like all that Carsen wanted was to be in his Mommy's embrace. I was grateful for that experience.

Cierra has done really well with her evaluations from Renee. She tracks a little bit and has really good tone. She does really well on the bottle. Like Carsen her feedings are alternated with a bottle. She is also learning to nurse. The coordination of the sucking, breathing, and swallowing is something they both are trying to learn. Cierra loves her binky and that helps her practice two of the three.

We sure miss our babies. It gets harder to leave when I have more to contribute now to their progress. We love seeing them together in the same crib. I forget what it's like having a singleton baby. Seeing them together seems totally normal now. I forget that twins is not the norm. All I can say is it's quite a treat. It's a wonderful gift. We are grateful.

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Sunday the babies hit their 33+ week. We still don't know exactly when they will be coming home but we have always been told to count on or around their actual due date of July 26th. Carsen weighs 4pds.3oz. and Cierra is at 3pds. 15oz. Yeah! We always enjoy hearing about their weight gain.
On Tuesday we got some really fun news. First, the babies nurse told us that they were moved from room one, which is the room with the highest level of care in the nicu, to room three. Second, she said that they are out of their isolettes now and into an open crib TOGETHER! We were thrilled. Especially since we cannot always be up there with them. Now they can keep each other company. It made us feel so good.

Since Carsen was first taken off the ventilater a few weeks ago he has only been back on once. He has been doing really well since he was last extubated. Both Carsen and Cierra have a nasal canula for oxygen support and feeding tubes through their nose getting mommy's milk. No IV's or other tubes.

Carsen has not had a head ultrasound for awhile but the Doctors say his outcome is expected to be the same as before. Moderate to severe disabilities. We continue to pray and hope for the best possible outcome for our little guy. That's all we can do. Thankfully, Cierra has been almost perfect from day one. We are so grateful for that.

We so appreciate the love, support, and prayers from ALL of our friends and family. Thank you.

Journal

6/2/08

This weekend Braden, Grace, and I went to Ogden with Grandpa and Grandma Eskelson to see the twins. Heidi was still too sick to go into the hospital, and I hadn’t seen the twins up close for almost three weeks. It was really good to see them too. They both looked so good, it really did my heart good to see how healthy they both look.

Braden and Grace both got to go back and see them up close. Braden was so proud to see his little brother and sister. He was talking to them and holding their little hands so gently. Grace was really intimidated by everything and seemed apprehensive about everything. But she did like looking in at the babies. We all can’t wait to go back really soon and hang out with them some more.

Carsen & Cierra!