Photo Shoot

You were one smiley boy yesterday. I probably took 70 pictures trying took capture your smiles. I love the way they turned out. You had a great and happy day. I'll take it buddy, we'll take it! 

You're getting stronger and are doing such a good job. Your energy level is rising the past few days which is wonderful. 

Sure do love you,

Xoxo

Mom

Wind Blown

I adore watching your sister fuss over you. I am the washing and hand sanitizing police but your sisters are so good about it. 

Julia loved your little toes. He hair was blowing like crazy from your fan. It was so funny. You love your fan and it helps you stay cool. Your mattress is super hot and you already run hot so you definitely need it. Everyone else gets a bit wind blown but most of the staff love your bedside because they have to wear the gowns and they are toasty. They get a nice breeze by your bed!!!

You get so much attention, I just love it. 

You were asleep when we got there and the girls were super quiet. 

I love seeing all the things around you to keep you cozy and comfortable. 

The blanket roll in between your legs is my favorite. You love having your legs crossed. 

You woke up so I held you. You are beyond precious. You were in a great mood and I got lots of smiles. Then you tuckered out and fell back asleep. 

Sure love you baby boy. I smothered you with lots of kisses and my cheeks felt like they were going to fall off from smiling at you. So glad you had a happy day. 

Xoxo

Mom

New Setup

Here are some pics I took a few days ago. 

I take a gazillion pictures but you already knew that. 

When I got to the hospital Friday morning  I saw you sitting up and thought "oh my goodness I want to take pics!!" So I grabbed my camera and snapped this....

Then this...

Then this...

You were so done. You're still cute even when you're cranky. 

Here is a side by side of the trach before (right) and your trach now (left). The one you used to have had the connector right under your chin whereas the new one has a few inches before the connector. It looks SO much more comfortable. 

Hopefully you'll like it more, I'm pretty sure you do. If you could talk I think you'd say, "oohhhh I have room under my chin, this is sweet!"

Each time I think you're back to your old self you have several days where you're just not followed by an afternoon where you are energetic. Then several off days followed by a happy day. I've determined you're probably just pooped. I think you're so tired from when you had CPR that your body needs a long time to recover. I think it took the wind right out of your sails and it will take you another few weeks to completely recover. Any you know what, Caleb? That's perfectly okay. You take the time you need. We can be patient. You've had a rough month and are entitled to some time to recover. I sure love you. I'm so proud of you and how much you've accomplished. You're a fighter.

Xoxo

Mom

Oh honey

I have moments here and there when I see glimpses of your normal self. I am so grateful for those moments. I am super grateful for the smiles you gave me in your sleep just now. 

You haven't been yourself honestly for probably the past month. June has been incredibly hard. I'm ready to go back to may when you were happy almost all the time, interactive, had energy for OT and just had great days. We are trying our very hardest to try and figure our if something is going on. When you just cry while I'm holding you I'm at a loss for what to do. It's happening more and more and I'm just so sorry you're not comfortable. I am incredibly grateful for the time with you though. I just wish I knew what you needed. Oh honey, I love you. 

It's okay, let's just keep on keepin on. 

Xoxo

Mom

The Little Things

I decided to take pictures of some of the little features that I love about you. As you get older you grow and things change. 

Right now I love the way your toes curl all the time. 

I love your chubby feet. I love how fat the heel of your foot is. That's a good thing since you get a heel stick every day, sometimes multiples times a day. I love the way your second to last toe is more forward than all the rest. 

I adore the dimples in your elbows. Look at that dimple.

I love how chubby your thumbs are. They are the same size all the way from the base to the tip. It's so darling. 

I love you sweet Caleb. 

And oh those rubber band wrists. Don't even get me started on those!!!

The pulmonologist noticed an increase in the type of white blood cell that relates to allergies. Looking back over your change form breast milk to half breast milk, half formula and then full formula your numbers have just climbed. You've also been gassier and gassier.  Last night you didn't sleep well because you were so gassy. That can be linked to a formula allergy. So we put you on a new formula tonight. I hope it helps your tummy feel better. Sometimes allergic responses can cause increased secretions and mucous so it might help your lungs a bit. 

Sweet boy, I love you. I love spending time with you. I love holding you. I love holding your hand. I love being with you and talking to you. Singing to you. 

I hope you sleep better tonight.

Sweet dreams, my little fighter.

Xoxo

Mom

You're such a Ham

Today you were in such a great mood!!! You haven't been in a mood like this for me in over a week.  I was trying to get a video of you sticking your tongue out over and over.  You'e been obsessed with sticking your tongue out, which is just adorable. After a few attempts I struck gold when you smiled AND stuck your tongue out while I was recording. It was the BEST! I'm sure I'll watch this video a few hundred times today. So happy to have this moment with you and so happy to have it on VIDEO!!!! When you are happy it's like magic for my heart. Even though your settings are still high I can cope a million times better because you're happy. When your settings are high and you're agitated, sad, and not interactive it's extremely difficult. I am so grateful for moments like today. Thanks buddy.

Chillin with Dad.

Showered with kisses.

 Hangin with sissy.

 Trying to kiss Hallie back.

Getting sleeeeepy.

Love you like crazy.

xoxo

Mom

No Words

After overhearing the doctor talk to another family about their baby and how good the baby is doing, you know it's not a good sign when the doctor makes his way over to where you are and stands there for what feels life forever while he tries to think of something to say. Unfortunately I got to experience just that today. Finally I couldn't take the grim silence anymore and just said, "I'm glad his CO2 is down," at the same time he said, "There's really nothing to say." I'm sure these doctors want to be able to come over to our NICU spot and say things like, "He's made a lot of progress (in a day)," or  "I expect him to be ready to move from the NICU in x days," or "we took your little one of the ventilator today." But those words don't fit our situation. I don't expect them to have gushing news. I can see the settings on the vent, I can look at the x rays, I can see how sick you are, I can. But it's hard not to burst into tears when the doctor can't even muster something positive.

They have a tough profession and I don't envy them in circumstances where the odds are stacked against someone. The thing is, we don't need odds. Odds have nothing to do with our Heavenly Father's plan for you, Caleb. His ways are higher than our ways. Sometimes I wish I could look at our situation and see what He sees. Because when I am sobbing in the parking lot or the closet, or while I hold you in my arms wondering what the future holds it's hard to get past the heartache of the last 9 months. If you could feel how much I love you, you would know why it's so hard. Even though I trust Heavenly Father and his plan for you, Caleb, it doesn't make it easy to get through things. Even though I know that He knows what is best for His children it's so hard on my heart. He knows that the love I have for you makes it worth it though and that is enough. This is all worth it. I wouldn't change you in our family for anything in the world. Look at your angelic face...

You're beautiful. You're a fighter. You are our little champion. 

Just as the Doctor has a hard time coming up with words today, I have a hard time finding words for a different reason. The are no words that would do justice for the gratitude I have for all the people that have served and continue to serve our family.  We are forever grateful for those that love, serve, and pray for our family.  

xoxo

Mom

Normal CO2 Numbers!

We've been hoping your CO2 would go down into your "normal" range for several days now. Over a week actually. Your blood gas this morning was 59.9! Yay!!!!! I'm so relieved. 

Claire and Hallie came to see you yesterday. You make so many faces that are so funny and cute. You do a frowny face every once in a while that is just so sad. Dad took a picture during it while Claire was holding you..

You're dimple is just THE cutest. And your cheeks are beyond kissable. I kiss them like crazy when I visit you. 

You're just the cutest sweetest little boy. Can't wait to come love on you today. 

Xoxo

Mom

Caleb

Your name is a very special name. Mom and Dad picked out the name Caleb Luke over 11 years ago. I always thought we would have a boy but after having 4 children dad and I were sure we were done. In fact, people would ask us if we would ever have another baby and my answer was, "Uh, it would take a miracle." Well sweet boy, you are that miracle. Back when we picked out your name I didn't even think of the bible story that involved a man named Caleb. Caleb was a companion to Joshua. It's of Hebrew origin meaning, "faith, devotion, whole hearted." Caleb is known in the bible for his fearlessness in the face of overwhelming odds. You, my son, have a name that couldn't fit you more perfectly. Your giant, fearless and devoted spirit shines through your little body. Growing inside me for almost 10 weeks with next to no fluid is miraculous. Your survival of birth and the first six months of your life is miraculous. You are an amazing son and I couldn't be more proud to be your mother.

xoxo

Mom

Discovery

 Your smile melts my heart.

 You made a discovery yesterday....you found your hand!!! I love it when you discover something new or learn a new trick. 

 

Your CO2 levels are still high today. Not as high as 98 but still high (80 was the last one). They're repeating another blood gas this afternoon. We aren't sure why it's so high. We're trying to figure it out but no luck yet. When I got there to see you today you turned purple and blue and had to be bagged. My heart is in turmoil on a regular basis. This is unlike anything I have ever experienced and continues to require more and more of me and us as a family. I took the girls' pregnancies and health for granted. I didn't realize what a huge blessing their term deliveries and health were. I don't think you can fully appreciate those things until you go through a difficult pregnancy and have a baby in the NICU.  Especially a baby as sick as you still are. You are a miracle, Caleb Luke. You have a great purpose and work to do here on earth. I don't understand everything. There are so many things I wish I knew. But I know that your life has a purpose and plan. That Heavenly Father is aware of you and our family. That our Savior is helping us during this, helping you. Oh Caleb, I love you.

xoxo

Mom

Sweet Sissy

You blood guess yesterday after making more changes to your vent and giving you an extra dose of LASIX was better. I don't think any of us have ever been so happy about a 70. That's usually high for you but yesterday it was your low and we were happy to take it. The doc gave you steroids as well as some abtibiotics through your trach. Hopefully we will see improvements soon. The biggest thing is your comfort. When you aren't comfortable and just look miserable it makes things seem unbearable. You started perking up in the afternoon yesterday which did wonders for my heart. Today you seem to be more of your normal self which is great. 

Audrey came to the hospital with me today. She was very excited to hold you again. Out of the blue her eyes welled up with tears and she just cried for you. She just said she didn't know why you needed to be in the hospital. She cried and said she wished it never would have happened. When she held you next to me she cried more. She said if she could have one wish it would be that you didn't need the tubes. Then she said, "actually I'd wish for more wishes so I could wish for things like that." I just held her and you and we both cried. I told Audrey that it's really hard. That you were a special little brother, to which she agreed. I told her how lucky we are to be able to be with you and that even though you aren't  all better that you are still a miracle. She was in agreement there too. 

She sure loves you. We all do. 

After a very busy morning you are finally resting comfortably. I love watching you sleep. You had an echo, blood draws and they changed all your sheets because you peed through them. They ordered pediatric circuits for the vent since you're too big for the NICU size. You're just hangin in there. I sure love you. 

Xoxo

Mom

"Well that's a crappy blood gas."

Those were dad's words when I told him what your blood gas was this morning.  You co2 was the highest it's been since, well, I don't remember when. Normal for you is 60's and this morning was 93. They did a repeat blood gas and it was 98. So they went higher on your ventilation settings again. You're just not yourself. We are trying to figure out what's wrong. It's so tough because with chronic lung disease there aren't answers. And what works one day may not work the next. What we think might be causing something may or may not actually be the reason. I'm sorry sweet boy. We are giving you meds to try and keep you calm so you're not working so hard to breathe. I took gram to the airport and am watching you get your chest physical therapy (CPT). These last several days have been so hard. On you, and us. I love you so much, buddy. 

Hang in there. 

Xoxo

Mom

A thing or two about fairytales

You're working a lot harder to breathe and you had a low fever this morning so the doc ordered labs to see if anything is going on. Your oxygen needs are higher as well as your vent settings. I was able to spend quite a bit of time with you today since gram is still here which I loved. She leaves tomorrow and I'm not looking forward to that. It's been so wonderful to have her here to be with the girls and helping so much. After we called to check on you tonight and the nurse said your oxygen was up I just broke down. Daddy is coming to spend the night with you to be near you. We love you so much, Caleb. More than you'll ever know. I wish I could breathe for you and just give you a little break. 

You were having a hard afternoon and dad held you during his lunch break. I love seeing you two together. It makes my heart so full. 

I guess you and dad will have a guys' night tonight. Just be sure not to go to bed too late. You need your rest and dad needs to go to work tomorrow. You and dad can talk about boy things. I'll think about the fairytales I watched growing up. If I could choose a fairytale it would be sleeping beauty. You and the people that love you would be sleeping under a spell. That way your lungs could grow while everyone is asleep and then we would wake up and no one would be any older. We'd have to do some tweaking to the movie plot but I think it could be about a handsome prince named Caleb instead of a princess named aurora. 

I think we all grow up with a fairytale in mind for our future. But as we experience life and trials we come to realize how difficult life really is. So how can life really be a fairytale? Because we are given people to love on our journey. Our individual stories are unique and personal. During our times of trial it is those we love; the savior, our families, and friends that help us conquer and endure. At times there is more required than we think we could possibly give, causing us to search the very depths of our souls for more. More strength, more patience, more endurance. When we cry and pour our hearts out to Heavenly Father I know He listens. I know He sends comfort and love. I have witnessed it and continue to witness it. What fairytale is there that has no opposition? No struggles? No difficulties? There isn't one. Our happily ever after won't fall into our laps. We have to do the work to reach it. Even when it's hard. The beautiful thing is we can yoke ourselves with the Savior and follow Him. He will lead us to where we need to be, to our happily ever after. I trust Him. I trust Heavenly Father's plan for you, Caleb. For our family. There are many things in fairytale stories that don't transfer to real life, but there are a few things that do. This is just plain hard. But it is worth it. 

I love you. 

Sleep tight. 

Xoxo

Mom

Sweet boy

You, my sweet boy, have been through so much your first 6 months of life. You are such a strong boy and are quite the fighter. You had a rough morning. I think your body is wiped out from yesterday and you need some time to settle back in. Your blood gas this morning was not good so they went up on your ventilation settings. Your oxygen is higher than your typical baseline but dr green said you're doing better today than he thought you'd be doing. Dad came to be with you this afternoon and held your hand for hours. You started acting and feeling better and when I got there this afternoon you were awake, happy and smiling! 

I must have kissed your face a couple hundred times. Oh my goodness I love you. Gram said she loves watching you respond to daddy and me. We each held a hand and you'd look back and forth from dad to me, me to dad. 

Your sisters played American girl dolls and had quite the imaginations going. 

Here is Emily, who is trached...

Here is her IV drip she has running. 

And this is Caroline. She has an IV as well. 

I love seeing what the girls play. 

You fell asleep after kicking and smiling and interacting with us for almost 2 hours. I soaked in every second. 

Today is Gram's birthday (yes she is so sweet she wanted to be here for us even on her birthday.) We went shopping and to dinner. She has been so wonderful and helpful and I love her dearly.  Wednesday is coming too quickly. 

She has loved being able to visit you. 

After a rough morning your day seems to be ending a bit better. I can't even express how much I love you and how grateful I am to have you here to kiss and love. Seeing you happy and smiling this afternoon helped my heart so much. Sleep well tonight sweet baby boy. I pray for you every single day. 

I love you like crazy. 

Xoxo 

Mom

P.S. While I took gram shopping the girls heart attacked her room. If was so sweet. You've got pretty awesome sisters...

Quite the exit from church

At the end of sacrament meeting dad got a call from dr green and stepped out to take it. I was at the other end of the bench so I didn't know. Out of the blue dad says from behind me, "Caleb pulled out his trach and is okay right now but we need to go." We left suddenly, in the middle of the closing hymn, which I'm sure was quite the exit. Something happened to your airway, either the trach came out or there was a mucous plug, and then you had a bronchial spasm and stopped breathing completely. My heart just dropped. They had to do chest compressions for a few minutes. Oh, sweet boy. 

Dad drove rather fast. While we were driving Julia said, "Mom doesn't make the car go....vrrrrrrooommmmm," as she makes the noise of the engine accelerating very rapidly! We all laughed pretty hard. 

When we got there Dr green came to talk to us. Once they put a new trach in you were still clamped down and no air was getting in so they had to do compressions. You were at 100 percent oxygen but there wasn't air exchange. After a couple minutes your stats started coming back. We got there just as they were getting you comfortable again. After about another half an hour your oxygen percentage needs went down to the 50's. 

I hugged Adrianne and Jamie and cried. Jamie was the one that did the CPR on you and it shook her up. She said you looked up at her with such a said face after and she just cried. Adrianne is like a second mom so of course this was hard on her too, she cried too. The head nurse was in there during everything and just kept talking to you and saying, "Caleb don't do this. You're not gonna do this. Come on." You have such amazing nurses and doctors. They love you and care about you so much. We are so grateful for them. 

Adrianne made a sign for Father's Day for daddy. Dr green said he was sorry and happy Father's Day and dad just said, "he's still here so it IS a happy Father's Day." 

We came home to get some food and then dad and I will come back to be with you. Goodness that was quite the scare, buddy. One of the hardest for sure. We love you like crazy and are so grateful you're still here. 

Love you to heaven and back. 

Xoxo 

Mom