Family picture

I remember the night I had an ultra sound and found out that our baby Caleb had significant problems. We were faced with the unbearable possibility that our baby might not be born alive. Our first glimpses of him we were filled with worry and deeper heartache than I had ever felt before. The next day I remember telling my mom, "this isn't how I imagined my family picture." I didn't imagine hanging a family picture on my wall that had someone missing. I also hadn't pictured a child who's time may be limited and whose challenges would be severe. It wasn't that I didn't want a disabled child. I wanted Caleb more than anything in the world. I had the opportunity to voice how much we wanted Caleb in many of those early doctor appointments when they presented our options. I pleaded with Heavenly Father for the opportunity to take care of our baby no matter how big his challenges were. We wanted Caleb with all of our hearts, his circumstances just weren't what I had pictured. I remember that phrase This isn't how I imagined my family picture every time I put a new photograph in a frame, add a picture to a scrap book, or hang a portrait on my wall. My heart is filled with so much gratitude every time I look at my sweet little family inside those frames. It wasn't what I had pictured, it is so much sweeter than I could ever have imagined. I would never have pictured how proud I would feel of Caleb for his courage, faith and patience. I never pictured how full my heart would feel as I watch my other little boys lovingly watch over him. I never pictured how my sweet little boy, whose time may be limited and whose challenges are severe, would touch the deepest parts of our hearts and change our lives forever. Just yesterday Matthew told me, I just get such a big loving feeling inside whenever I'm around Caleb- and I just have to hug him.
I took our little family into the studio for some last minute pictures before Caleb goes in for surgery. The pictures aren't fancy, but nothing could be more beautiful to me. I would never have pictured the exquisit delight I would feel in hanging photographs of theses precious souls on my wall.

A little prayer for Caleb

Caleb has had increased complications with his breathing ever since he was hospitalized last Spring for RSV. He obstructs his breathing often throughout the day, and when he's agitated we often have to hold his mouth open for him so that he can get a good breath. I scheduled Caleb for a tracheostomy surgery a few weeks ago because we wanted to see how we felt after taking a step in that direction. We've been really prayerful about whether or not this is right for Caleb. It has been a really difficult decision because Caleb has really good days, and then has really challenging days. On the good days, a trach doesn't seem necessary at all, but on the hard days, I can hardly bear to see how hard he works to breathe. Overall we've decided that a trach has a lot of potential to improve Caleb's quality of life, so we've decided to go ahead with the surgery which is scheduled for next Wednesday. We are also waiting to hear back about the possibility of doing a g tube surgery at the same time. My heart is so tender as I contemplate taking this step and changing the way we've taken care of Caleb up to this point. But I know Heavenly Father will wrap us all up in his arms and help us to have courage. If you have a quiet moment, please say a little prayer for our sweet boy!

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!"