Tuckered out

Because they changed the pressure on your vent yesterday it caught up to you today. You had a really hard morning with lots of agitation, hardly any sleep, and difficulty breathing. You were retracting to breathe (when your chest sucks way in) so your oxygen needs went up. They went back up on your pressure and you're still trying to recover, bless your heart. They gave you medicine to calm you down. It seems when they change the pressure setting it causes you to work so hard that you can't calm down to sleep. As soon as they gave you the medicine, within 5 minutes you were out. You slept really well and your breathing relaxed a little. 

Julia woke up with a cough this morning so I wasn't able to come in to see you today. As long as she has this cough I won't be able to come in. You getting sick would be beyond terrible. It's hard to know you're having a hard day and I can't be with you to hold you and kiss you. 

I love you more than I can say and am sending you thousands of hugs and kisses. I hope you have a more comfortable day tomorrow. Sleep tight, sweet boy. 

Xoxo

Mom

Such a Happy Day!

Today you had a great day! You started to wake up when I got there and stayed wide awake. You smiled for dad AND me. Today was the first time you looked right at me and smiled. The few times you've smiled for me in the past you've smiled at the things I was doing but you weren't looking at me. Having you look right at me while you smiled just melted my heart. It was such a sweet moment. One I will cherish always. 

Cheryl said you've started to love falling asleep with your arm covered with your giraffe lovey that the girls gave you. I think that is just adorable. 

I love this picture. 

The other day you were holding onto your monkey while dad was holding you. 

So so darling. 

I love your chubby hands and feet. I love your sweet big cheeks and darling dimples. 

Today you just had a great day. You were well rested. Weren't working super hard to breathe. Got some naps in without fighting too hard. Smiled lots for dad, Adrianne, Cheryl and me. Didn't get super upset unless you were poopy. You do NOT like pooping or being poopy. Honestly, I can usually tell when youre about to poop because you oxygen saturation goes way down and you get super super ticked off. You're the king of blow outs. :) 

I'm so so glad you had such a great day. It makes my heart so happy. 

I love you, buddy.

...all the all the way to heaven and back.

Xoxo

Mom

Brave

Hello sweet boy. I love this picture of you with the lion from Atticus. Cheryl tucked him in with you tonight. I like to think that Atticus had a big talk with you before you came here and gave you lots of advice on being brave and courageous. He is the best one to give you tips on that. He is amazing. 

We went to visit his grave tonight and the sky was filled with his colors. Blue and orange. 

Atticus loved balloons. I remember when he was a little toddler I loved getting him "boons." He was obsessed. He also loves balls. We signed a ball for him and I made sure to sign your name, Caleb. 

The wind wasn't cooperating but we got him super hero, star, and "you're number one" balloons. We sure are lucky and blessed to know him. 

Sleep tight with your brave lion. It's a pretty special present. 

I love you, Caleb. 

Xoxo

Mom

More Firsts...

Audrey got to hold you for the first time! 

She is a big fan of yours. 

While she held you Julia took random pictures on my phone using different color effects. 

Julia is a goof ball. You'll learn that really quick as you spend more time with her when you're older.  

For the first time the nurses did bath time while we were there! We got to watch you and see that you're not really a fan. You had gotten all hot and sweaty in the morning so adrianne bathed you while we were there. We watched her weigh you too. You've broken 13 pounds mister! Way to go, Caleb!!!

You sure did smell yummy after. Mmmmm. But I love your smell even when you're stinky. I'm your mom so it's just that way. 

After bath time dad watched your trach change for the first time while I took the kids in the waiting room. Mom and dad will be learning how to change it and do all sorts of things for you. 

When we were leaving you kept smiling for daddy. It's the first time you've smiled at him repeatedly. Everytime I got the camera out you would stop smiling. You little stinker, you. We will keep trying. I can't wait to get a picture of you smiling on purpose! 

I love you, Caleb. 

Like crazy. 

Xoxo

Mom

Hallie'sTurn

When we came to see you Hallie could hardly wait because she knew it was her turn to hold you for the very first time.

She loved holding you. She'd keep her hand on your head and kept saying how cute you are. 

Lots of kisses of course. 

You kept sticking your tongue out so we deciced to give you some bananas. 

Big hit!!! You loved them and smacked away. I think you swallowed some of them, just not all! 

You'd suck really hard and keep the binkie I'm and then it would come shooting out all of the sudden. 

We got a pretty good kick out of the pictures Claire took. You did so great with the bananas and we loved every minute! 

Hallie loved her turn holding you. The other girls can't wait for their turn. You are loved and doted on. 

I'm so proud of you, Caleb. Have a good nights rest and keep doing what you're doing. You're amazing and I'm so grateful you're my son. 

Sweet dreams, buddy. 

Xoxo 

Mom 

Build it back up

Each time you fall asleep you sat better and they're able to wean your oxygen. But about 15 minutes later you wake up and cough or cry and desat. I think your body just needs to rest and build up a reserve so your oxygen can stay more stable. Getting sick tends to wipe babies with chronic lung disease out. You were really upset when I was holding you but thankfully you calmed down. I love our time together and try my best to keep you comfortable. You're seriously so adorable. 

I can't get enough of you. 

I love you, Caleb!!!

Xoxo

Mom

UTI?

Dr Nystrom talked to dad and me yesterday and said it may be a UTI. We are still waiting for your blood results. They had to re draw and re test on Wednesday. Unfortunately your veins weren't cooperating like they normally do and they had to stick you 6 times. Poor boy! It's a good thing I got there just after they finished or I would've been a stress case.

Your breathing is more normal which is a relief. You're acting more like yourself and don't need Ativan to calm down. Your fever has been gone for a few days and I'm glad the IV antibiotic seems to be doing its trick! 

Julia came with me and loves touching you and talking to you. You were working on holding your head up with dad. You're getting stronger buddy!!!

You were rubbing your cheeks and eyes because you were so tired.

You're just the sweetest little boy! 

I'm so glad you're feeling better. You work so hard every day and your just the strongest fighter! Hang in there champ! 

We love you. 

Xoxo

Mom

P.S. You gave me smiles for the first time on wednesday. If this doesn't make you grin from ear to ear, I don't know what will!  

Fluffy chick

When I got to the hospital you were sleeping. Your IV was going with antibiotics and the Tylenol had brought your fever down. You were breathing over 100 times per minute. I held you when you woke up. You were upset but were able to calm down. I stroked your head with my fingernails and you fell asleep looking like a fluffy baby chick. 

You were making faces with your mouth which are so cute. 

Such cute lips! 

Adrianne decided to give you Ativan and you were able to sleep more soundly and were breathing much slower. I loved holding you. 

While I was holding you your trach was leaking quite a bit. For a split second I could hear you make noises over the trach while you were crying but it was gone as fast as it came. I would love to hear you. 

Adrianne texted me a picture of you sleeping. 

I love you, Caleb. 

We still haven't gotten any results from the lab tests so we are still waiting. 

I'm sorry buddy. 

Sure do love you. 

Xoxo

Mom

Fever

Well sweet boy, the doctor called this morning which always gets me on the edge of my seat. He said your oxygen needs are still in the 60's and that you have a fever. They're going to start IV antibiotics with the hope you respond to them. You're still breathing faster and harder but the pressure increase on the ventilator seems to help a little bit. You've been so upset that they've needed to give you meds to take the edge off. I'm so sorry you don't feel well. I hope this passes quickly. It's so hard to not be in control. Especially when it involves you in these situations. I love you, son. 

Xoxo

Mom

Dana took this of you yesterday, I think you can tell you're not yourself. 

Firsts...

You're about to get your first bottle. The OT isn't feeding your for nutritional purposes but just up to a teaspoon full for developmental reasons. We were all very excited!

 Since you like your binky you didn't have a problem sucking,

 You didn't really know what to think about it all.

But you did get a few millimeters. 

 

You got tired pretty quick.

 I love this expression. So serious and tired!

 Your big sister Claire got to hold you for the first time. She was beyond excited.

 She soaked up every moment and took such good care of you.

 She adores you. We all do.

Yesterday was a day with some pretty great firsts. 

Today has been rough. You just aren't yourself. You're not sleeping well. You're having a hard time breathing. Your stomach and chest suck way in because of the work its taking to breathe. Your oxygen has gone up to 60. It hasn't been 60 in about a week or two. Nothing I did calmed you. Rocking, patting, bouncing, holding, talking, or cuddling. I left the hospital a little early to get some emotions out. It's hard to see you trying so hard to breathe. We try and figure out whats wrong but some of the time we are stumped. Daddy got there just minutes after I left so I was grateful he got to see you. Made stepping away easier. I feel like you can sense my emotions and that sometimes it's better to step out. I love you so much, Caleb. I wish I could do more for you. I'm so proud of you and so honored to be your mom. Mom's like to make things better, it's the way Heavenly Father made us. So not being able to make things better is hard. Really hard. 

Hang in there, buddy. I'm sorry you're having a rough day. I sure love you...

All the way to heaven, and back.

xoxo

Mom

Adrianne took these yesterday. You were having conversations with your friends!

I love your tongue sticking out!!!

You're so sweet!

This was today after you finally calmed down. You had your fan blowing and dozed off with me tickling your head. I can't leave when you're upset. I'm glad you got a good nap.

30's, Take 2!

This morning adrianne texted me this picture of you. You're oxygen was between 34 and 45 yesterday and through the night. Second time in just over a week to dip into the 30's!!! I feel like we are making progress towards coming home! It was around 50 this afternoon after all your crying.

You seemed to like the bouncer until you pooped and had a come apart.

When we got there this afternoon to see you, you were having a hard time. You hasn't slept pretty much all day. You were so tired that you'd only sleep for a few minutes and then wake back up.

You were super upset so I asked adrianne if I could just hold you standing up and rock and bounce you. So adrianne held all the wires and tubes and I rocked and bounced you standing up for the first time ever. It was beyond wonderful. To just hold you and calm you the way I calmed your sisters when they were babies. Within about a minute and a half you were asleep. I savored every second.

Dad and I just checked on you and oh my goodness you couldn't be any cuter.

Love love love you. 

Like crazy. 

The end. 

Xoxo

Mom