Rosy cheeks and bubbles

We made it through 24 hours after surgery with no major hic-ups! Hooray for Caleb!
Today Caleb was still on the ventilator, but as the day went on, he started breathing quite a bit on his own. The doctor has slowly been weaning him of the ventilator and will probably do a spontaneous trial tonight to see how he does with only a trach mask. Hopefully by tomorrow Caleb will be breathing on his own through the trach. Caleb's color looks so good! It is so wonderful to have a little boy with rosy cheeks! His cheeks stayed pink all day.... ALL DAY! It made my heart feel so much more peaceful to see that the trach really seems like it is going to help Caleb feel happy in his little body. Caleb has so many secretions coming out of his mouth, nose and trach! You should see the bubbles he can blow! So I constantly slurped the bubbles for him and enjoyed every minute I got with him today. Dallan and I had a 2 hour training today to introduce us to trach care. We have another class in the morning for 2 more hours, so we're slowly learning how to be Caleb's experts! I'm excited to learn all I can so that I can take good care of him and bring him home! We truly appreciate your prayers! We know our family is so blessed by the faith that is exercised in our behalf!

Faith instead of fear

Caleb had so much courage today! Caleb had a difficult morning because he still wasn't feeling well. When we got to the hospital and checked him in, the doctor ordered a chest x ray because he wasn't getting enough oxygen. Sure enough, he's fighting pneumonia! They all agreed that going forward with the surgery was in his best interest, so we changed him into his hospital clothes and wheeled him down the long hallway with the anesthesiologist. Saying good bye was the hardest part. I just love that little boy so much. Dallan said the last words from his mouth were "Play hard Max Hall... go BYU!" The anesthesiologist called to tell me that his intubation was smooth, and that the surgery was going well. It took a little over an hour, but everything was "smooth sailing" as our doctor put it. He told us we could see him in about 10 minutes--- but we ended up waiting for almost an hour and a half! I could sit still for a few minutes at a time then would have to pace the hallway. We were so happy to finally see him. He looked so much better than we thought he would. His color already looked so much better! We spent the evening with him, then got him all tucked in and cozy before we left to get some sleep. He still isn't feeling well, but hopefully he'll be on the mend. Right now he still isn't breathing on his own. He is being ventilated through the trach. Hopefully, his little body will remember what to do! Dallan and I have 4 training classes- 2 hours each, and then we have to take care of Caleb on our own for 12 hours before we can bring him home. I am so thankful for sweet Caleb. I am so thankful for a loving Heavenly Father who stands by our side in our most tender moments. And I'm so thankful for all of the kind words you have all shared with me. Thank you for helping me to feel faith instead of fear!
Right before we took Caleb to the hospital


Waiting for surgery

We got lots of comments about our obvious preference for BYU



After surgery

Parts

The hardest part? Trying to figure out which of Caleb's parts I love best.

Caleb has my double jointed thumbs


How can you resist such pudgy feet?


Dandelion fluff hair-do


My little "winker" (even though he's sleeping right now...)


My little buddy- hand in hand and heart to heart!

Trach day

Today Caleb is going in for his tracheostomy. It really has been an agonizing decision, and I've had many tender moments in those quiet night time hours. Caleb has been sick for the past week. He hasn't been keeping his feedings down, and he has really been struggling to breathe. Those moments when he's turning blue,and looking panicked are the moments that really make me think that a trach is necessary. The doctor is aware that he's sick, but he still wants to go ahead with the surgery. He thinks it will just get more difficult the more we get into RSV season. We were not able to get the g tube scheduled because there weren't any surgeons available, so Caleb will be getting his trach and tubes in his ears today. I've been making arrangements for my other boys, cleaning my house, packing my bags, and working on Christmas cards- and now that I'm all ready, I'm afraid. I'm afraid that it's going to be overwhelming to take care of Caleb in a new way. I'm afraid I won't hear his voice again. I'm afraid that I won't be able to bathe him the same way. I'm afraid that Caleb will be hurting, and I'm afraid that my other boys are worried. I'm afraid of going back to the hospital because it has always been such a dramatic experience. I'm afraid that Caleb will be afraid.
Caleb's surgery is at 1:00 PM today. I'm praying that Heavenly Father will replace my fear with faith and that all will be well! I love you my sweet Caleb.

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!