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