Fluffy

I just love fluff-- Caleb fluff. His little body is so fluffy and completely snuggable! His little feet are so cute and pudgy- I love to rub those sweet little feet! His fingers look like little potbellied people, and I love how his knuckles are little dimples in his hands. And oh the cheeks, those soft round cheeks! They are so irresistibly kissable. Even Caleb's hair is as puffy as a dandelion, blow on it and make a wish! Thank you for being so fluffy, Caleb, and for reminding me that a little bit of fluff is a good thing!

Last Hurrah

Last week I took Caleb and Mitchell to the park with a few of their little buddies for one last hurrah before the cold settled in. It felt so good to soak in the sunshine and get pink cheeks!

Little Pumpkin

Caleb came trick or treating with us today! He had a great time being cozy in the wagon with Mitchell. We took him for about a half an hour- his longest trick-or treat ever! It started to rain a bit so I brought him home to hook him up to a feeding and hand out candy! He was so cute and fluffy in his pumpkin costume! Happy Halloween Caleb!

Pumpkin Patch

Caleb was such a good sport at the pumpkin patch. Matthew wants him to dress up like a pumpkin for Halloween since he's "our little pumpkin." It is so sweet to see how much Caleb's brothers love him. Even Mitchell likes to hold his hand while they're side by side in their car seats.

Surgery consultation

Today we consulted with the doctor that would do Caleb's tracheostomy. We were able to ask all of our questions and left feeling a little more educated. The actual surgery would only take about a half hour if everything goes well. He would be in the PICU for about four days, then he would move to the floor for about 5 more days while we are trained to take care of him. We may decide to do the g tube at the same time. If so, then the surgery would be longer, and the recovery time would likely be longer too.
The doctor said that it is rare for a family to wish they hadn't done a trach. He said that he thought it would make life easier for all of us not to constantly worry about if Caleb is breathing or not. Dallan and I are still giving it some serious thought, but don't want to miss a window of opportunity before the Winter comes....decisions decisions....

Tracheostomy

Today I scheduled a date for a tracheostomy surgery for Caleb. Caleb has really been struggling to breath, and it just breaks our hearts to see him work so hard. We've been debating getting a trach for quite a few months, but haven't been able to decide if it's the best thing for him. I think sometimes we have to take little steps forward so that Heavenly Father can confirm whether or not we're heading in the right direction. So we've got a date on the calendar to ponder for a few weeks, and hopefully we'll gain a bit of clarity!

Facial cranial clinic

Yesterday Caleb had an appointment with the facial cranial clinic at Primary Children's hospital. At these visits we usually visit with a plastic surgeon to monitor Caleb's skull, cleft, and the bones in his face. Then we visit with an orthodontist, an Ear nose and throat doctor and an occupational therapist. The last time we went to this appointment, one of the doctors spent his whole visit encouraging me to write up a "do not resuscitate order" for Caleb so I left in tears. This time, however, we were well informed about Tracheostomys and G tubes, and were encouraged about Caleb's teeth. I was worried Caleb's teeth because it's hard to get into Caleb's mouth with a toothbrush, so I've been rubbing his teeth off twice a day with spongy mouth swabs. The orthodontist said his teeth looked good and that in another year we'll want to get them painted with fluoride. With children like Caleb, even a simple cavity means they have to have a procedure under anesthesia, and it increases their risk of aspirating. The very best part of the day-- Dallan surprised me by leaving work early to come to the appointment with me! We'll take a "date" whenever we can get one- even if it's an afternoon at the hospital!
Oooo La La!

Neurology appointment

Caleb had a neurology appointment this week. I really like our doctor and I feel like we came up with a good plan to see if we can increase Caleb's comfort level. We are going to try to wean him off of one of his seizure medications (topamax) because we're not sure if he's really needing it or not. We are also going to start giving him a new medication called baclofen. It is supposed to help his muscles relax more. Dr. Fillioux explained that as a typical brain develops, it is able to send signals to the central nervous system to help the body to stay relaxed. Because Caleb's brain is not developed, his body is not getting those signals, which may result in the rigid arching behavior we are seeing. It seems like discomfort triggers his body to stiffen, but then he'll stay in a cycle of rigid behavior for longer than he should. We'll try giving him this medicine 3-4 times a day to see if it helps. We have the option to have it pumped right into his spine, but are going to try giving it orally first. Caleb has developed strong little muscles, but hopefully now we'll be able to keep him comfortable for longer periods of time. Good luck Caleb!

Questions

Caleb has had a rough couple of days. He was quite agitated all weekend, and all through the night last night. His body gets so rigid- He kicks his little legs, and arches his body so much that his cheeks turn bright red and he can't settle down. He can't keep any food in his tummy when he's so uncomfortable, and it seems like we're limited on what we can do. Discomfort also seems to increase his siezures. Most medicine we've been given to help during these times doesn't seem to work for him. It's just heartbreaking to see him feel uncomfortable. I finally called his pediatrician today to see if we could figure out how to help him. Of course, Caleb totally relaxed a few hours before our appointment, and he didn't show the doctor any of his tricks while we were there. This doctor visit was like most that I have with the medical Field...."Caleb is uncharted territory...he wasn't supposed to live this long...we've never seen a child like him at this age..." At times it is quite challenging to have so many questions and so few answers. But we're so blessed that we have more questions because it means we still have Caleb! I guess the key to helping him relax is to schedule a doctors appointment! I have an appointment with a neurologist on Wednesday, hopefully it'll have the same effect!

Just breathe...

Caleb hasn't been hooked up to oxygen for 3 whole days!! It's amazing how easy it seems to load him into the car without lugging a tank of oxygen everywhere we go! He still has obstruction and clenching issues that make breathing difficult for him, but oxygen doesn't seem to help in those times. Now if we can just put a bubble around him to protect him from respiratory illness this fall and winter...

Sharing

Mitchell is just starting to learn about sharing. If you saw him in nursery you'd understand the "just starting" part. If any child even walks toward him he drops to the ground and covers whatever toy he's playing with his whole body. (no fumbles for this boy!) The other day I put Mitchell and Caleb in the bath together. Mitchell put some soap on his hands and started gently washing Caleb's hair. Then he took all of his toy boats that he had carefully lined up and started putting them in Caleb's hands. "Here doe Talah" he said, "here doe." My heart melted as I realized that Mitchell sees Caleb as his baby brother and that his first real sharing moment was with him.

Caleb's dysphasia appointment

I took Caleb to Primary children's hospital this past week for a dysphasia appointment. We adjusted his diet to meet his caloric needs, and we are trying some different formulas and medications to see if we can help his tummy be more comfortable. We also spent a lot of time talking about a tracheostomy and a g tube. It really tugs at my heart to think of more surgeries when there are no guarantees that they will improve his quality of life. With Caleb there are never any clear answers...we'll keep learning more about our options and then and try to follow our hearts!

Summer time

This summer Caleb has slowly improved since his time in the PICU in February & March. We haven't been able to wean him from oxygen yet, but we've still tried to take him on a few family outings close to home! He enjoyed having his brothers home for the summer!

The temple for Family Home Evening

BYU campus

Cove Fort with the family

Brothers!


Always time to snuggle

All ready to go to Grandma's house for pioneer day

A field trip to the Bean Museum

Sporting his new shirt from Nana and Papa's mission

Fireworks in the driveway

Family Reunion

Caleb's lungs

I spoke with the doctor today who after looking at Caleb's chest X rays thinks he is doing worse instead of getting better. So we have to begin another agressive regiment of antibioticsto see if it helps him to improve. Even though Caleb's oxygen numbers on his monitors are generally okay, his breathing habits have been really concerning to me because he doesn't look like he is moving air in and out very well. The findings on his X rays are consitent with what I'm seeing at home. My heart is feeling a little bit heavy as I wonder if this is becoming a pattern for our sweet little guy. Hopefully this next round of treatment will help him so we can enjoy the summer together!

Caterpillar capers

A few days ago our neighbor brought us two caterpillars so that we could watch them grow, make cocoons,and turn into butterflies! The boys were just tickled because butterflies are their passion right now! Yesterday we took them out of their little containers and let them sit on a stem of leaves to munch for a while. They are so cute. They look just like "The Hungry Caterpillar." Sadly, "chubbers" the chubby one disappeared and we can't find him anywhere. I was sad about it for the whole afternoon. My only hope is that he found a nice cozy place to make his cocoon, and that he'll emerge in a few days as a butterfly flying around the house!
On another note, Caleb, our other little "Chubbers" is still pretty sick. He was so sweet this afternoon, though. When I wrapped him up in a little cocoon of blankets and rocked him in my rocking chair, he was as content as can be! Hopefully in a few days he'll be able to emerge as good as new!

If tonight was my last night with you...

Yesterday afternoon Caleb seemed to aspirate after he had a throw-up episode. After he finally finished coughing, his breathing became a lot more shallow and he had a hard time keeping enough oxygen in his body. Last night I tucked him into bed with me and snuggled him for a while. While I worried and listened to him breathe, I was thinking- if tonight is my last night with you, what would I want to say?
If I knew I had to say goodbye to any of my sweet boys, what words would I want them to hear from their mom? I've asked myself that question numerous times especially during tender times with Caleb. It seems like there should be a bigger way to say "I love you"- Where are right words to say that I love them so much that it takes my breath away- that I love them so much that sometimes it even hurts- that I love them so much that my heart wants to beat for them?
I know that before they were born just the "hope" of them filled my heart with joy- that when I was expecting I loved knowing that they were growing right next to my heart- and now that they are here, my heart is wrapped so tightly around them that I can't breathe.
I took Caleb to the doctor today and spent the afternoon having chest x rays. He did aspirate and as a result has Pneumonia. He isn't moving air through his lungs very well. He is on a big dose of antibiotics and is in need of a lot of supplemental oxygen. My heart has been tender as I've wondered what I should say to Caleb today. How do I tell him how dear he is to me and how proud I am of him? But then when I wrap my arms around him, and when I'm really still, I can feel his heart telling me that he knows- and that "I love you" is enough.

The diaper miracle

While we were in the hospital with Caleb, I met a remarkable mother who has a sweet daughter with numerous special needs. We were room-mates with our children for a few days and became fast friends! This weekend she called to see if we could use some diapers and some pediasure for Caleb. Her daughter had outgrown the diapers, and they had recently switched the formula they were using for her. You can imagine my surprise when she came to my home with boxes and boxes of diapers and many cases of the food we use for Caleb. We were so touched!! What a wonderful blessing for our family! Sometimes miracles come in diaper boxes!

The Cowboy Miracle!

Caleb got to have 3 riding lessons at "Courage Reigns" this Spring. He really seemed to enjoy it, and his little body loved the motion of the horse! His instructor, Laura was so sweet with him. She would sing him songs and snuggle him as they rode around the arena. All of Caleb's helpers just loved him, and they all commented on the sweet feeling that Caleb brings with him. What a sweet miracle to see "cowboy Caleb!"

Caleb's hospital miracle slide show

Make a Smilebox slideshow

Updates on Caleb's hospital stay

February 23, 2008
Our dear family and friends,
Caleb was admitted to primary children's hospital last night. He had a rough spiral downward in the ER and he ultimately had to be put on a ventilator to breathe. It was a long night as we contemplated the possibility of saying good bye to our sweet boy. After he was put on the Ventilator they were able to stabilize him and he's now in the PICU. He has been diagnosed with RSV with a possibility of pneumonia. He has multiple IV lines and has wires everywhere! They are also testing him for meningitis. He is on medication to help keep him relaxed and to help with his blood pressure. He is being so brave, and is so sweet about being so sick. Dallan and I are home for the evening and will plan on going back and forth to watch over Caleb, yet still take care of our little boys at home. It was really hard to leave Caleb in the hospital, but the nurses really encouraged us to get some sleep so we can have the energy we'll need for the days ahead. We would be so happy for any prayers you could offer in his behalf! Thanks for being so good to us!
We love you all!
Love
April

February 24, 2008
Hi to our sweet family and friends!
I just wanted to let you know how our little Caleb is doing today.
He is doing better today than the last 2 days. He is still stable and is slowly starting to improve. He is still on the ventilator but is starting to take a few breaths on his own so that is encouraging. His blood pressure is doing better and he started getting some food put right into his intestines to get his system used to having food in it again. His tests for meningitis came back negative so that was a huge relief! The nurses have even let me put some of the tubes in that they've had trouble with since I'm so used to it. He still have lots of IV's and so he is really puffy like the "stay-puff-marshmallow- man" He has such a sweet spirit about him and I just don't know how we were so blessed to have such a remarkable little soul!
My heart is so full today as we have felt blessings of those who are praying and fasting in our families behalf. We know that the Lord hears each prayer that is uttered and that we are blessed to the fullest.
We feel really hopeful that Caleb will continue to improve and that we'll have him home soon!
All my love
April


February 25,2008
Hi everyone
Just letting you know I spent the day with Caleb and he is still slowly improving. Today they took the central lines out of his legs. They looked so sore, so it was a relief to get those taken away. The doctors also continue to try to wean Caleb from the ventilator and they think they might try taking him off in the next few days- maybe even tomorrow! They are being really careful about taking him off because he was really difficult to intubate in the first place. His blood pressure was steady today, and he held his body temperature for the first time today without heating lights! Today he opened his eyes quite a few times to peek at me-he sure is a sweet heart!
Thanks for your concern and prayers!
Love
April

February 26, 2008
Hi everyone
Just a quick note to let you know how Caleb is doing today.
He actually had quite a difficult day. They took out his breathing tube, and he wasn't quite able to breath on his own, so after they worked on him for over an hour, they finally had to re-intubate. I think I went through a box of tissues. He had to get a couple of new IV's, but his blood pressure and body temperature stayed consistent throughout the day. He did do four huge blowouts in his diaper today which gave me a good excuse to give him a bed bath and lather him up with lotion! He had another chest x ray, and his lungs looked a little bit better, but he still has quite a ways to go. It was really hard to leave the hospital tonight knowing he was still uncomfortable, but I know Heavenly Father will wrap him up in His arms until I go back in the morning! Thanks for your prayers!
All my love
April

February 29, 2008
Caleb is once again breathing on his own! His ventilator tube was removed this evening about 6:15pm. He still struggles to breathe but at least they haven't opted to put the tube back in him yet. He's one tough kid. To help him out, April climbed into bed with him to hold him - somehow navigating through all his wires. It seems to be calming him down to have his mother's arms around him for a change. She'll probably stay the night with him.

Thanks for all your prayers and concern and other help. We continue to feel the Lord's hand in our lives and know He's taking good care of Caleb.

Dallan
(Sorry this e-mail wasn't as bubbly and gushy as it would have been if April were here to write it.)



March 1, 2008
Hi everyone
I just thought I'd send a little update on Caleb. He has been in the ICU for a whole week now! He was taken off the ventilator again yesterday and so far they haven't had to reintubate him. However, he is really struggling to breath because his airway is so swollen. I was with him until 1:00 AM last night then finally had to come home to sleep for a few hours and take a shower. Today they are watching him really closely and they are giving him steroids to see if they can reduce the swelling, but it's definitely possible that they'll have to reintubate him. We're really hoping that it won't come to that because then we have to start all over wearing him off the ventilator, weaning him from the pain medicine he gets when he's on the ventilator, and then he'll be even more swollen by having the tube put back in. It's a bit of a hard situation.
Dallan will be spending the day with Caleb today so I can get caught up at home and maybe sneak in a nap! Thank you so much for all of your love, concern, prayers, and service in our families behalf.
Love to you all
April


March 3, 2008
Hi everyone,
Just thought I'd let you know that Caleb is still hanging in there! Tomorrow will be day 11 in the ICU! He has broken his record! They haven't had to reintubate him so far. He was on a high flow of oxygen with a nasal cannula, and then he had to be put on C PAP, now BI PAP which is the last step before putting him back on a ventilator. He has a mask on that pushes air into his lungs and then keeps his airways open. So far he is tolerating it well and seems to be improving. He still has a lot of retraction when he breathes, but that is slowly improving as well. His swollen airway seems to have improved, so now he just needs to continue to recover from the RSV virus. We appreciate the countless ways that Heavenly Father has watched over us through your sweet acts of service. We love you all and appreciate the love that is showered upon us daily.
Love
April

March 8, 2008
Hi everyone,
I'm just letting you know how Caleb has been doing the last few days. He had a fever for several days and the doctors eventually figured out that he has a urinary tract infection. So Caleb is getting antibiotics for that while they continue to work on his lungs. Today they switched him from a bipap machine to a simple oxygen mask to see if Caleb will tolerate that better. They are concerned that his lungs aren't improving faster, and that he can't seem to be restful. Caleb is being very brave and is just so sweet about everything.
Dallan is spending the day with him today while I enjoy the boys and catch up around the house!
Hope you are all doing great
We love you
April

March 8, 2008
Hi everyone, I just talked with Dallan on the phone and he gave me the most current update on Caleb.
Caleb tolerated the oxygen mask for about 7 hours, then started retaining to much carbon dioxide so they had to put him back on Bi pap. The doctors are puzzled why he is still needing so much support- why his lungs are not improving more quickly- and why he just won't rest. A few days ago Caleb had an EEG all day which showed that his problems don't seem to be seizure related, so tonight they are going to do a sleep study to see what they can find out. Tomorrow they are going to alternate with the bipap mask and the oxygen mask every two hours and see how he does. They also discussed the possibility of a tracheotomy which makes me too sad to think about right now. We hope he'll continue to improve even if it's bit by bit!
Love you all
April

March 11, 2008
Hi everyone
I just wanted to fill you in on the latest details of Caleb's hospital adventure. The past few days have been really tender as have had some difficult conversations with doctors about quality of life vs. quantity of life. Caleb is not making significant progress with RSV and is still needing a lot of assistance with his breathing. We are told that even if he recovers, we will be dealing with the damage of RSV for many months to come. Some of his breathing issues that we have continually dealt with at home have become bigger issues in the hospital. Caleb does have obstruction in his airway which makes it difficult to move air. He also has some central apnea where his brain just forgets to tell him to breath. Doctors have given us 3 options. 1) keep Caleb on the bipap machine and try to get him to a point where he can come home with it. We may be able to wean him off of it and just hook him up at night. This helps with his breathing, but doesn't solve the obstruction issue. 2) Have a Trach put in Caleb so that he will breath through his throat and bipass the obstruction in his upper airway. This doesn't solve any problems with his central apnea but could greatly improve his ability to breath with his airway. This option comes with a lifetime commitment with lot of extra care and various risks. 3) Get Caleb stable enough to come home and let nature take its course. Right now we are leaning toward getting Caleb stable enough to come home with the bipap machine so that we can give him the opportunity to try to recover in our home environment. If he doesn't make significant progress then we will consider a trach unless we feel like he is in a pattern of steady decline. So far we feel like Caleb is trying very hard to get better and continue his earthly mission.
As you can imagine, our hearts are very tender as we consider what is best for Caleb.
Many doctors have urged me to consider Caleb's quality of life and the quality of life of the rest of our family. Many of them haven't been able to grasp what a privilege Caleb is and how immensely he is loved and adored. Today we met with several different people, and after I told them our family story, I felt like they had a glimpse of our real "quality of life." They were all in tears and deeply touched. I took the time to explain how Caleb's life is surrounded by love and how our families quality of life has been so richly blessed by Caleb's presence. The resident doctor I have been working came up to me later in the day with tears in her eyes and said "thank you for reminding me what "quality of life" really is. I so often look at these children and can't imagine that they have any quality of life, and today you taught me."
The Resistor therapist I work with has been wonderful with Caleb, but has also been a bit of a sceptic about what his quality of life could really be. Today we took Caleb's mask off and tried replacing it for a time with a nasal canal while I prepared to hold him. When I took the mask off- Caleb's whole face lit up in a big smile while I said "hello my sunshine boy" and just started kissing him all over. Caleb couldn't stop smiling, and when I glanced at the Therapist, he had tears in his eyes. I think he caught a glimpse. I held Caleb for almost 2 hours, and he never stopped smiling.
I feel so strongly connected to Caleb, and I know that he knows how heart breaking it is for me to even entertain the possibility of saying good bye. Sometimes I wonder if he would linger just for me. I've worried that I don't want him to feel miserable in his sweet little body. Today I felt like he told me that he is happy, that he's still here and that we have every reason to move forward and be hopeful.
We don't know what the coming days and weeks will bring, but I am eternally thankful to Heavenly Father who I know so carefully considers my every request. I am so thankful for sweet little Caleb who continues to reach out and touch people in the deepest parts of their hearts.
All my love
April

March 13, 2008
Hi everyone,
Just thought I'd share what the last few days have shown with Caleb.
Right now he is alternating 3 1/2 hours on the bipap machine then 3 1/2 hours on an oxygen cannula which is giving him about 28% oxygen (room air is about 21 %)
He is tolerating it pretty well, so it looks very hopeful that we'll be able to bring him home next week on Bipap. The next piece of the puzzle is figuring out how to feed him. He can't eat while he's on bipap or for an hour after being on bipap because so much air blows in his tummy. So we are going to have to squish his 7 feedings into 3. He'll be getting a lot more food at one time, which he isn't used to. I'm a little worried about it because Caleb already throws up a lot, so this is going to be tricky for him. We are going to start seeing what he will tolerate tomorrow. He hasn't had any food in his stomach the whole time he's been in the hospital, because throwing up increases his risk of aspirating and developing pneumonia. If we can get him to tolerate his feedings then we can get him home. He will still be trying to recover and will either be eating, on bipap or on oxygen all the time for a while, but maybe being at home will help him get better faster so we can wean him off of so much breathing support. If we aren't able to keep him stable, then we'll have to bring him back in and give serious thought to a tracheastomy.
Caleb is starting to look like his old self again and has the eye. He even cut another tooth today! He is just as snuggable as ever and has spent a lot of time on my lap the past few days. He's been in the hospital for 3 weeks now-- amazing!
--- on another note-- Mitchell had his MRI this week and his brain looks completely normal. That was our last test for him, so it looks like his seizures were a fluke!
-- Many of you have heard about Dallan's car accident. We are so thankful that he walked away from a harrowing event with barely a scratch! Heavenly Father certainly watches over our little family!
Love to you all!
April

March 16, 2008
Our dear family and friends,
My heart has been so overwhelmed with love today. I am so humbled as I contemplate the countless prayers, times of fasting, and the faith that has been exercised in our family's behalf. There just aren't words to express how eternally thankful we are. I know that our prayers are heard, and that Heavenly Father is continually blessing us with his tender mercies. Our hearts are truly "knit together in unity and love."
As I have been visiting with doctors I have told them that we strongly feel that Caleb needs more time to show us what he can do before we make any decisions about surgeries. Caleb is into his 4th week in the ICU and the past few days he has shown us that he is getting better and wants to come home! We are even in the process of weaning him off of his bipap machine. It looks likely that we are on the road to bringing him home with only some supplemental oxygen! He will still be in a recovery process, but we feel like home is the best place for him to get a big dose of L.O.V.E to help him to regain his strength.
I know that Heavenly Father has wrapped Caleb in his arms during this tender time. We have also felt His love through the service and love rendered so sweetly by so many of you!
All of our love,
April