Caysen: A Half Birthday Letter

Dearest Caysen,

 

Can you believe we are here discussing your HALF BIRTHDAY? Oh, what a half a year it has been.

 

This past month you have spent at home after being discharged from the hospital the day after Thanksgiving. You have had some follow up outpatient appointments but nothing overly exciting and it has been SO NICE. Thank goodness for shiny new stents in your heart! We spent your first Christmas with you AT HOME. Granted, you slept through most of the family Christmas and you stayed away from extended family for germ reasons, but you were HOME! :)

 

This month you weigh about 12 and a half pounds, depending on the scale you are weighed on. You have tons of hair centered up top, it is still brownish, but lighter than when you were born. Your eyes are a navy color still - I'm wondering what color they will be! You wear size one diapers, size 6 month clothes for length. You are taking about 3 ounces of fortified breast milk by G Tube only since you decided taking a bottle was for the birds. Your day feeds are three ounces over the course of 2 hours and you get an extra long night feed.

 

You sleep from about 1030-730 on your continuous feed, wake up for a short period and then sleep again until almost 11. You are not so good at napping - and tend to want to be held to nap. Of course we are so busy hooking and unhooking you from feeds all day that once you are asleep you rarely stay asleep. 30 minutes is a good nap for you, but it's not uncommon that you would stay awake for 3-4 hour periods then get overly tired (read: fussy).

 

You have had weekly visits with Sooner Start and are getting stronger in that area. You are spontaneously reaching better - you just don't seem overly motivated for anything. ;)  You still don't roll, and you hate tummy time with a passion. You still don't have the back of the neck muscles to really hold your head up - thats what tummy time will help with. But you haaaaaaaate it. Overall your neck control is improving and we've been working on trunk control. It just seem so hard to make progress in that area when you don't take your feeds well and want to continually gag/wretch during them. You are getting fed ALL the time making therapy time difficult! Not to mention the cord we are attached to when you are getting fed continuously. But - we will get there. Eventually.

 

You still seem to have issues with air in your belly - and when you gag because of too much air in there - you will vomit past your fundo. This happens usually daily, if we can't get to your button fast enough. It's furstrating as we can tell it's painful for you, and yet there's nothing we can do. Plenty of times we can have you hooked up to vent - yet you will still vomit past the fundo despite having your Mickey open. Its awful to watch. :(

 

On Christmas Eve you decided you wanted to add blood to your poopy diapers. We are no stranger to this - and are changing things up in hopes to be able to troubleshoot and keep you at home instead of in the hospital again for the SAME thing in the past - where all they will do is send it off to be tested and confirm that yes, it is indeed blood. Oh, little c - I am so weary of this. So tired of hospitals, doctors, nurses and the little surprises you throw at us all the time. Is it so much to ask for peaceful time at home ya lil turkey?

We still have no idea what the future holds. When will your surgery be? Where? How will you handle it? How long will you be in the hospital? But all of these questions are trivial to ask repeatedly, despite that being such a human thing to want to do. I continually find myself remembering to pray for our steps to be directed. I don't know the answer to those questions, no one here does. But, I know that they have already been planned out and we just need peace to go where we are supposed to and to deal with what is handed out. 

The other day I was driving to work, and often times I use that time to get lost in thought and prayer. I was praying for you, for what is to come, as I was driving through some really thick freezing fog. It was blanketing the cars, the grass, and you couldn't see anything until you were right up on it. I passed through one intersection and before I knew it, it was COMPLETELY clear, all around me. It was such a strange thing, to be lost and without clear direction in the fog, to being able to see really far ahead, and clearly - all in a split second. It was so funny that I was praying for you when I realized suddenly the fog was gone. God was winking at me in that moment, reminding me that I may be confused about your bloody stools, about your heart surgeries, but it will all clear up. We will have direction. It's such a beautiful promise. 

Oh Caysen, your six months here on this earth have been intense to say the least. You have spent 100 days inpatient in your short 184 days of life. 54 percent of your days in the hospital! But you know what? 2014 is going to be our year. Our year for growth, promise and healing. We are going to learn that much more this coming year, go through even more ups and downs, but we rest in the comfort knowing we will be taken care of. 

I was rocking you the other night in your room after a particular fussy time - and it brought tears to my eyes. Tears because I know you are going through so much, and yet you can't tell us what hurts. Tears because you are so little, yet so big in so many ways. Because I realize how swiftly these stressful six months have gone, and how my little baby is growing. And I am SO grateful that you are here to grow! So thankful to reach a half birthday with you. I will forever be grateful for each smile you give me - each day, each moment. Love you bub!

Jesus Loves You Little C, and so does your family!

Mommy

Half A Heart

Another tearjerker of a heart poem/story while we are at it: Author - Unknown.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

What's it like?

I saw this poem the other day and had to post it as it is so perfectly said! 


What is it like to have a child with a CHD?

It's Lasix, Aspirin, Enalapril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping…
It's heart caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of calls to his pediatrician...
(She knows me by name...I'm a mom on a mission!)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we're all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Caysen's Dedication Letter

Dear Caysen,

Tonight we are dedicating you at church. A night we weren't sure we would ever have the honor to experience. 

Honestly, your Dad and I debated about whether this timing was wise or not. You are in a very fragile state - not tolerating your feeds well, and with your heart in a "band - aided" state that if you were to get sick, we would likely be back in the hospital after just discharging 16 days earlier. Those germs, those people with all their new germs, make everything so risky. But? We don't know what the future holds or where you will be during the next dedication. 

We decided this was far too important to us. We want to make this statement before our friends and family, we want to commit to raise you in a Godly home, teaching you about Christ and His love for YOU, and most importantly giving you back to Him.

And you sir, he loves you so very much! He has proven His love for you time and time again in your short five months. From assisting the doctors to save you on your third day of life, to countless surgeries, hospital visits, procedures and interventions. You have been through more than most children this age, and you are still here today by His grace.

Caysen, your Dad and I had such big plans for you. We had mapped out the way we were going to do things. But God had different plans. Bigger plans. He has great things in store for you. I have learned not to plan ahead much further than tomorrow, as God always has a different plan. But, it's a BETTER plan. These days I don't want much for you, besides for you to remain with us. I don't care what you do in your future, or what you are or are not capable of. Honestly, I want the best but when it comes down to it, I don't care if you grow up to be a successful businessman or a cook flipping burgers at McDonalds. I want you to have joy and to know Him, and all that He is. As long as you have that, I know you will be wealthy in more ways that you ever could need.

I want you to know on this night that we are dedicating you, how much we have learned from you. (And not just in medical terminology and diagnoses!) You have taught us more in your short time here with us than we have learned in our entire lifetimes. We have grown closer together, we have learned to seek and ask for help, and most importantly how to walk the closest we have ever been with the Lord. We can't thank you enough for strengthening our bond, our committment towards our family and most importantly our faith. We have learned that there are so many highs and lows, that sometimes it's a sickening roller coaster. But you would never appreciate the highs, if it weren't for those stomach dropping lows. Besides, it can be lonely at the top. But when you are low and leaning on Him, you find much more comfort than you realize.

I was thinking about your name the other day. We really didn't decide until the week before you were born if you were going to be a Corbin or a Caysen. When I go back and look up the meaning of your name, I find a variety of answers. "A variation of Casey", "pure" and "vigilant one". The last two particulary stick out in my mind. You are so young, so pure, so innocent and have been through so much. We have spent countless hours in the hospital, awake at night, praying and keeping vigil over you. The more I look back on it now, your name is just perfect and completely fitting for you.

I'll close with your life verse. It was hard to choose, as you have SO MANY verses that I use to think of you. The entire passage from Jesus Calling on your day of birth is one of my FAVORITE ever, one of the best reads that I go back and look on every time something comes up and I need encouragement. But I didn't choose those verses as your life verse. I chose the verse given to me by my friend Malissa, one that is fitting as it is the Psalm of your birth DAY and birth YEAR. I have included the verse after - because fittingly verse 14 discusses the heart. 2014 Is going to be a great year!

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

We love you so much Caysen. We are beyond thankful for you and have been so blessed by you in countless ways. You by far are the most difficult, challenging and yet rewarding thing we have ever been given the task of caring for. We love you more than we could ever put into words.

Love you to the moon and back!

Mommy and Daddy