Oh yeahhhh

I think you're practicing for when you box your sisters. You gotta protect that handsome face!!!

While I was there I met with the OT and she showed me how to massage your legs and feet. You seemed to love it even though you were asleep and your oxygen saturation improved. I'm excited to try it on you! 

Haylie is your nurse tonight because when I checked on the webcam I saw this! 

How cute are you!?

It makes me so happy you are liking the binkie more and more. When I was holding you I gave you the binkie with sugar water on it and you loved it.

Looks like you tired yourself out. 

You're just the sweetest, cutest, most loveable baby boy! 

Love you like crazy. 

Xoxo

Me 

Oh baby baby!

You are just so cute I can't stand it. 

I got to hold you again today. I love love love to hold you. I can't get enough of you. 

Your sisters practically scream every time I show them a picture or pull you up on the web cam. 

You were smiling in your sleep again. Speaking of smiling, when dad came during lunch while you were sleeping he gave you a big kiss and said "what are you doing buddy?" Then you smiled, it was adorable!!!!! 

You seem to be doing pretty good today. Your oxygen is in the 60's after you started the day at 75. You got to 55 when you were on your tummy hangin over the boppy! 

Love it. 

You lasted about ten minutes and then fell asleep sitting up. Oh baby baby. I love you like crazy. We all love you like crazy. You're one special boy!!!! We are ready for you to come home so we can see you more and help you more. We know you'll come home when you're ready. That day will be so wonderful. The docs are giving us no guarantees and no time frames. But I'm sure glad I get to see you each day now. That the girls get to see you this weekend. And I'm beyond grateful you're part of our family. 

Xoxo

Mom

Happy Day

I got to see you today!!! AND hold you! Happy day! Lots of exclamation points!!! I was a tad excited! Love love love you! 

You're so darling! Every face and expression you make is darling. 

Your oxygen went down 8 percent while i was holding you. From 68 to 60. I love that you respond when I'm with you. I wish I could be with you all day. Oh how I wish I could take care of you more. But we make the best of the time we do get, don't we? 

Seriously, Caleb. I am over the moon for you. 

Last night when I checked in on you with the girls you were smiling!!! We were all squealing. It was soooooo cute! You're quite the celebrity buddy. 

Your oxygen waa in the high 60's today. It's 75 right now. Much better than yesterday! They are going to order a custom trach for you. They'll measure you and decide exactly what size you need. Hopefully soon. 

Sure do love you. 

Xoxo

Mom

98

This morning when Adrianne got to work you were at 98 percent. She changed your position and was able to get your oxygen down. She left a note for us...

It says "good morning!  I am going to have a better morning. I love you!  I am going to feel better. Try not to worry. My oxygen is at 72 right now."

❤️ Caleb 

It's so hard to know if there is an underlying problem or if it's just your lungs trying too hard. I wish I knew. We will keep trying. You do need a longer trach that they have ordered. It is so hard to not be with you helping to soothe you. When I check on you with the web cam and you're upset it just breaks my heart. I am so grateful that you were stable enough to do surgery. That was a gigantic, enormous blessing. 

I love you more than I can express buddy.

Xoxo

Mom 

Goodnight buddy

I still don't feel great so I wasn't able to see you today. Your oxygen was up to 90 percent this morning. It's just so hard buddy, I'm sorry. 

You're just as handsome as can be. Daddy went to see you today. I hope I feel back to normal soon. It's so hard to not see you and it's been 2 weeks today since I held you last. I hope you have a good night, and I pray that you can feel our love. I love you baby boy. 

Oh how I love you. 

Xoxo

Mom

A glimpse

This post is for those of you that are wondering a little bit of what things are like for me as I try and cope with the way things are and my "new normal"...at least for now. It's also for me to have to look back on because the present doesn't last forever.

My mom sent me a note written by a mother of a child with a disability...

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Here is the spin of a NICU mom. (But keep in mind that the difficult journey of a NICU parent while extremely difficult is usually resolved, at least in the norm, by the baby's due date or at least soon after. Most babies that are in the NICU have a path to recovery and how things will be, whether normal or a new normal. That is a luxury we do not have.) 

DESTINATION UNKNOWN
By Leah Fish
NICU Mom

The excitement of having another baby settles in and continues to mount like the anticipation and excitement of an amazing trip. All the wonderful things to look forward to and plan for float around in your head like a dream. Like the "Welcome to Holland" analogy, we start preparing for the best flight. But for NICU parents and families we are told to rush to the airport way before we had our things ready and feel thrown through the doors, barely able to make the flight. It feels that not only has the destination been changed, like the parent of a child with a disability, but feels as though we are still mid flight with the destination unknown. Each story and flight is different. (We have been on this flight not only for the 4 and a half months our sweet Caleb has been in the NICU but for the months I spent in the hospital on bedrest as well. It is unlike anything I can explain.)

Here is our flight while still en route...
The turbulence that has come so many times during our flight has been more difficult than I could imagine. In the beginning I was terrified when the turbulence came. Scared and desperate, wishing I could choose the destination. There have been times when I was sure that our sweet boy was going to go back to our father in heaven. In fact just 2 weeks ago I didn't think he was to stay here on earth. But then the turbulence subsided and evened out...once again.  There are times I feel like, "oh my goodness, I think we may be able to make our decent and even put the landing gear down." Like feeling Caleb has stabilized and will come home soon and I can start planning the nursery. I get comfortable and get out of my seat.  But then the wind changes and the plane takes another dive. More turbulence. Each time it catches me off guard, I'm walking in the isle and have to rush back to my seat. I try my hardest to strap in and remain calm but it's really really hard. It takes more out of me each time. 

With 4 other children you can imagine what that adds to the flight. Leaving them to visit the baby in another part of the plane. Trying my hardest to spend the right amount of time with all of my babies. Not wanting the older ones to feel like I left them when they needed me and were scared. But knowing my time with the youngest could be the shortest of all and wanting to create memories with him too.  It's unlike anything I can compare it to. The worst is when I'm so stressed and trying so hard and I get frustrated and upset with the older ones when they are having to adjust to the commotion and change and trying their hardest to survive the flight as well. 

I look around and notice there are lots of other people on the flight with us. Sometimes surrounding us. Family and friends I can see, others I can feel. It's those people that sit with my children when I'm visiting the baby. It's those passengers that do selfless things for me so many times I can't count.  Sometimes I don't see what they do for me while I'm not in my seat. It's those people who pray continually for me and my family. Lots of them strangers I've never met. It's because of those on the flight I'm able to keep going at times. 

So here I am, a NICU mom and family, mid flight, still unaware of where our destination is. We can't exactly get off the plane. I will say that the terrified feeling is a feeling that doesn't come as much anymore, because I know Heavenly Father knows what is best for each of us. He is the one flying the plane. My savior is his co pilot, there to help and calm me as I go through the most difficult flight I have ever faced. Because I trust in Him and His will I truly want whatever that is for Caleb and our family. No matter the destination. It took me months to get to the point where I really truly want whatever the lord's will is and am willing to submit mine. I got to that place right before Caleb's surgery and it is a wonderful place to be. But it took a tremendous amount of effort and still does each and every day to stay there. What makes it increasingly difficult is that I still don't know where that destination is.

When I wrap up submitting to the lord's will, unaware of what that is, in the love I have for my son I am left with emotions and feelings that span the largest spectrum in the world.  Because of that love for my son I will always have these emotions but have to allow my faith in Heavenly Father's plan to inevitably trump them. This flight is seeming to last forever. However, I know it won't. For now, I have to trust in my experienced, loving, all knowing pilot while gaining strength and comfort from my Savior who is helping to fly the plane. Knowing that they are there the entire flight, along with many others, and will always be with me no matter where we end up gives me strength to continue. 
Once our plane reaches it's destination there will be lots of adjusting. We will have to understand a new country and will even learn a new language. But that is a post for another day. For now, we are still mid flight, holding on.

Oxygen Swings

Haylie, one of your night nurses, put this note by you last night. She said you would hiccup and raise your eyebrows high. How cute is that? 

You sat in your boppy today and I found you snoozing. You blow bubbles a lot, I'm sure you'll figure out swallowing soon. 

I'm coming down with something so I didn't get to see you today. Daddy went to see you and got to hold you. 

Tonight when I checked on you again this is what I saw...

It melted my heart. You're so stinkin cute!!!! 

Last night your oxygen was 57 and tonight you're 79. You've seemed so stable lately and I was getting comfortable with your numbers. Having you at 79 is hard. I know you would swing widely before and that it's the nature of your lung disease but when you go high again it's always hard. I just love you so much buddy. I'm trying my hardest to be patient. But there's no way around the fact that this is hard. Hang in there sweetie we will get through this. You're a rockstar! 

Love you like crazy. 

Xoxo

Mom

P.S. The charge nurse said that flu season still ends May 1!!! I'm hoping the girls will all be heathy. 

Hands to hold

When I got to the hospital today you were upset. Adrianne and I tag teamed you and she patted your booty while I held your hands. Holding hands is one of your favorite things. When you have one of dad's and one of mine I think that's your absolute favorite. I love that you love us to hold your hands. 

You've had a lot of secretions through your trach the last few days so the pulmonologist ordered a culture. The culture came back growing a few differnt things so they've ordered a mild antibiotic to help clear it. Your trach and g tube sites are both getting red and irritated so this antibiotic will help with those as well. It can also help from turning into something bigger. Right now you seem pretty unaffected which is good. 

They changed your trach today! It was getting really stinky. :) Adrianne gave you a good scrub and put you back in your old crib! You watched your mobile for a long time. I think you're enjoying your regular mattress again too. It makes me happy for you to have things back that you enjoy. Now that the trach is changed you'll be able to sit up in the boppy a little bit and do more things. And I'll get to hold you soon! 

Another NICU mom told me flu season was extended and I really hope that's not the case. The girls have a countdown going and are sooooo excited to see you. I'll find out when I call to check on you tonight. 

Sleep tight sweet baby boy of mine.

Love you to the moon and back. 

Xoxo

Mom

Your many faces

Open wide...

Your Elvis Presley lip...

About to sneeze...

Watching mama...

You thought really hard about smiling at me today and gave me half of a smile. I am so excited for when you grin at us. You smile a lot in your sleep and it makes me melt. I love watching you make faces. I could watch you ALL. DAY. LONG. 

The surgeon said he will come to cut your sutures and change your trach tomorrow. That means I'll be able to hold you soon! It also means you can get back in your big boy crib and watch your mobile again. I think you've missed your mobile! 

I'm gonna hit the sack. I hope you have a good night. 

You're pretty wonderful, baby boy! 

Xoxo

Mom

Stinky Feet

It's crazy to me that someone so small can have stinky feet. In your defense, you wear a thick cuff around your foot every day and it must get pretty sweaty. I don't mind your stinky feet. When you're a teenager I probably will though! :) 

Your oxygen has stayed around 60 and it's nice to not have you up and down so much. Makes me feel like you are more stable. The doctors aren't giving us any sort of time frame for when they think you'll be ready to come home. 2-5 months is probably a safe time frame. Only time will tell.  

Yesterday was a hard day for me. I can't look too far ahead or I get totally overwhelmed. I remember when it was day 2 of bed rest at the hospital in Rockwall. My neck and back hurt so bad from lying down. I was having a reaction to the IV antibiotics and was throwing up. I felt absolutely terrible. I remember the panic and sense of defeat I felt as I thought about laying in bed for months and worried I couldn't do it.  I looked at daddy and I said, "How am I going to do this for weeks and weeks?" He looked and me and very sweetly and calmly said,  "One day at a time. Just do one day at a time." That  has helped me throughout the months I was in the hospital bed and the months you've been fighting for your life.  

Yesterday I got the same overwhelmed panicky feeling thinking about the months that lie ahead. I feel an even greater panic because I think of how long its been since things began last September, 7 months ago, and we still have a long road ahead.  I want to scoop you up and cuddle you and bring you home so badly. We will get through this, buddy. The same way we have gotten through the last 7 months. One day at a time. Somedays will be harder than others but we will get through those days too.  Your recovery has gone much smoother than anticipated so that's just wonderful. You're doing so great, Caleb!!! 

Sure do love you. 

Xoxo 

Mom

Checking in on you

I absolutely love checking in on you on the web cam. We are so blessed to have the web cams at Dallas presby and I can't imagine having you in the NICU for as long as you've been without them. Look how sweet you look...

I just adore you. 

Oh I can't wait to hold you again!!! Those cheeks are THE best. Claire has been asking when she gets to hold you. The girls are beyond excited to see you in may!!!! 

While dad was at the hospital during lunch he said you gave a really big smile. He tried to take a picture for me but got the tail end of it. 

You're just the cutest. They changed the Ativan they've been giving you to another med when you get agitated. They said it's stronger and lasts longer so hopefully that will help. You slept more today than you have the past couple days so that's so great to hear. I should be able to hold you by the end of he week hopefully. It's already been a week and 2 days so I'm counting down! I love our snuggle time! 

Love you, buddy.

Xoxo

Mom

Happy First Easter

One of your Aunties made an Easter basket for you! Since we were staying at the hospital and it was a rough week she put together baskets for the girls too. The Easter bunny topped off the baskets with chocolate. Mmmm. 

We were supposed to have Easter dinner with auntie Cindy's family but ended up bringing it to the hospital to eat instead. 

Super grateful for family to help us through these last few weeks. Super grateful for the fun packages we've gotten in the mail that brought smiles to our faces. So grateful for so many people checking the blog to see how you're doing and for the continued prayers. Super grateful for the innumerable acts of service our family receives on a daily basis. We are so very blessed. Most of all I'm grateful for our Savior and his life. For the way he submitted his will to heavenly father's and was the best example to all of us. He strengthens me when I need it most. He has helped me through this trial and there are no words that would scratch the surface for how grateful I truly am to him. I know he will continue to be there for me and for our family. 

I hope you had a happy first Easter! I forgot to take a picture of the sign the nurses made you but I will! You're one loved little boy!! Goodness I'm lucky to be your mom. 

You're having trouble sleeping lately and I worry you're uncomfortable and in pain. The doc ordered more Tylenol and it seems you slept a bit better last night. Hopefully you'll sleep better and better as you finish recovering. The surgeon will be by this week to change your trach out and cut the sutures. Hopefully things are healing nicely even though you've been on steroids for so long. I pray they will. 

Sure do love you, buddy!

Xoxo

Mom

Big Step

You're soaring through recovery! Dad and I are so excited that you're doing so well so far! We are amazed at your strength, buddy! Way to go! Your IV drip for your pain meds stopped at noon today. You've been around 60 percent on your oxygen. You're getting your PICC line out tonight so no more IVs!! You were awake a lot last night and a lot today. Probably since you slept for about 3 days straight. You're eating 27ml per hour which is the most you've ever eaten. Before surgery you were at 23ml per hour. 27 is great buddy! 

When dad and I came to visit you today this is what we saw...

Oh be still my heart. 

You heard daddy's voice and woke up. 

The doc is going to start weaning your steroids and see if we can eventually wean you completely. This surgery is such a huge step towards coming home and it makes my heart beyond happy!!!

So happy for you and how much more comfortable you are. I love spending time with you. 

Sleep tight, Caleb. 

Love you so so much. 

Xoxo

Mom 

Wowzers

You are almost off all the meds associated with surgery. Your morphine drip will be weaned tomorrow and then we will see about weaning your steroid doses to what they were before surgery (and think about a long term plan as far as they go). Obviously we can't have you on them forever. You were breathing quite rapidly last night (90 times per minute). But you seem to have calmed a bit and you were breathing about 60 times per minute when I visited you this afternoon. Your oxygen has stayed at 62 percent all day. You're doing so well, buddy. You've been through so much and are just rockin recovery so far.

The roof of your mouth is shaped like the ET tube. From having the tube in your mouth for so long and sucking on it, the palate formed around it in a rather deep tube shape. Dad and I got a binkie that we are hoping you'll like to suck on that could possibly help shape it back. (If there are any occupational or speech therapists reading this, feel free to leave a suggestion if you have one. Or if someone's child had something similar we are all ears.)

I love seeing you interact using your mouth and entire face. You mesmerize me when I look at you. I will never get tired of seeing you, sweet boy. 

Wowzers. I'm so grateful you are doing well so far. You amaze me, sweet boy. Love you more than you know. 

Xoxo

Mom

Woot woot!

Your nitric oxide is completely weaned! That's so fantastic buddy! Some babies can get dependant on it so this is a big deal. And your oxygen requirement has stayed almost the exact same without it so that's impressive! Way to go, Caleb. 

Shannon and I rearranged all your pictures and added Easter ones your sisters made. It looks pretty festive...

I can't stop staring and smiling and kissing you. Have I mentioned that at all? 

You are blowing spit bubbles off and on. It's crazy to think that you've never swallowed before. Something you'll learn quickly I'm sure. 

Once you got one of your IVs out you immediately lifted your arm over your head and looked all chillax. It was so funny! You only have one line left in, your PIC line. Your pain med and fluids are running through that and everything else for surgery is gone. The reaction you had on Monday to the IV fentanyl is called chest wall rigidity. It causes your chest wall you go stiff making breathing extremely difficult. Boy was that scary. So grateful we figured it out when we did. 

You're getting rather swollen just like they've been telling me you would. Your eyelids are puffy, your cheeks keep growing and you're body is swelling too. Goodness you're cute though. 

This is one of your amazing night nurses, Cheryl. She was one of my favorites when you were just a few days old and we were lucky enough for her to sign up to be one of your primary nurses for night shift. I can just tell how much she loves you. It makes my heart happy. 

You had such a wonderful day. We will gladly and gratefully take it. Way to go, buddy. You're rockin it today. 

Hope you sleep well. Daddy is there with you and I came home to be with your sissies. I'll see you tomorrow. Love you like crazy. 

Xoxo

Mom

Calm Night

You had a calm night last night. Your oxygen stayed at 60 and your nitric is weaned down to 2ppm. You slept pretty soundly all night. They've weaned the drug that keeps you still so hopefully you'll stay somewhat calm today and not move too much. If you move too much than it can irritate your trach incision and cause it to bleed. Yesterday when you had your eyes open and dad or I would talk to you, you'd respond by sticking your tongue forward just a little bit. It was the absolute cutest thing ever. I continue to stare at your face constantly and can't stop saying how darling you are. Dad and I keep kissing you over and over. We have waited so long to kiss your cheeks! You're initiating almost all of your breaths which is fantastic. You're starting to get a little swollen but you're of course adorable no matter what! They've been putting oinntment on your eyes because when you're paralyzed you don't moisten them anymore. 

Oh baby boy. You're such a brave boy!!! 

Xoxo

Mom

I just can't stop smiling

Every time I look at you I smile. I can't get over how darling you are. I am on cloud nine.

You're doing really well so far. You are still  on a lot of meds...

Lots of IVs going. 

You've tolerated things pretty well so far. You're still paralyzed and sedated so things are pretty calm right now. When they start waking you up youll need to get used to breathing through your neck instead of your mouth. That might be a bit tricky. We are just taking things hour by hour. So beyond grateful the surgery went so well. Monday and Tuesday were very difficult so sailing through surgery was better than I could have hoped. So grateful for all the prayers. 

Rest up baby boy. 

Sure do love you. 

Xoxo

Mom

Day After

Well my sweet boy, you made it through surgery and were totally stellar! I'm so relieved that is behind us. Everyone has been telling us that the day after surgery is the hardest. That you're not in the clear yet. We still have more waiting and more trusting. I hope your recovery can be short but no matter what we will get through it. 

I can't get over your precious face. I had a perma grin for the first 45 minutes after surgery. I could stare at you forever. Your sisters oohed and aahed when they saw your picture. You're beyond precious. Dad and I got to kiss your cheeks and loved it. 

You were so brave and did such an amazing job. Way to go, buddy. Way to go. 

Sleep well, buddy. 

Love you to the moon and back. 

Xoxo

Mom 

Oh my goodness

You are more beautiful, I mean handsome, than I could have imagined. Oh baby boy. 

Stitcheroo

They are done with the surgeries and are stitching you up right now. They should be bringing you up within half an hour. It's gone so quickly and I am so grateful for that. I can't wait to see your cheeks and lips. You're almost done buddy. You've been so brave and strong. 

Xoxo

Mom

Spider-Man

Your anesthesiologist walked in with his lucky super hero hat on that he's had since his fellowship. The other anesthesiologist had lots of superheroes on his! How cool is that? Speaking of super hero, I never told you that the nursery I've been planning for you is vintage superhero. I mentioned that to Adrianne and she came into work today with a present for you (and me because I love anything for you)! 

It's absolutely perfect! I love it. Her mom made it which is just so sweet. 

You're my hero buddy. 

Adrianne just texted that they've already done the trach and are doing the g tube right now!!! Wow that was fast! 

Sure love you little super hero! 

Xoxo

Mom 

A thousand kisses

Mom and dad have given you at least that many kisses. The docs just wheeled you down to the OR. The doctors are all amazing. You get 2 surgeons in the OR and 2 anesthesiologists because you are such a special boy. You have been awake most of the afternoon. Dad has been my rock, and yours. I've stepped out to cry, pray, and stress away from you several times and dad has just stayed by you and cracked jokes to you. He is amazing. I hope you grow up to be like him. 

I showed you pictures of your sissies. They sure love you, buddy. 

Dana came to see you and give you a kiss. 

I love you more than there are stars in the sky.

This is the team getting you ready to transport to OR. 

It was almost like a parade. Dad was waving from the front, okay not really. 

Yesterday you got a very special gift. Auntie Cindy came to see you and give you a lion for bravery. The very same lion she and uncle Eric gave Atticus before one of his surgeries. It is a very special lion and such a sweet and tender moment. Sweet doesn't scratch the surface. 

Adrianne is going to call when they start the surgery. You came down on your oxygen as the afternoon went on which calmed me quite a bit. I am very grateful for that. You were at 55 percent before they took you down to the OR. They are prepping you right now. 

I love you, baby boy. 

You've got this. With the help of countless prayers, the doctors, many angels, Heavenly Father and our Savior. 

Xoxo

Mom