Thursday, November 28, 2013

Five Months: A Letter

Dear Caysen,

Oh sweet boy. Daily you keep us on our toes. I start writing these month updates early, so that I can post them on time. As I started writing this one, I couldn't help but question WHERE and WHAT your next steps are going to be.

This month has been stressful. You spent your first Halloween inpatient but got discharged from the hospital on the 2nd of November, and we happily took you home after being treated for what we thought was NEC. You tolerated your feeds great and you were doing well. You lasted at home for 8 days. The first five were fantastic!  You took your feeds by mouth, (Even finishing entire feeds!!), you took a bigger volume and in faster time and you tolerated it great. Then suddenly it went down hill and oh so fast. So fast that we had you back in the ER on a Sunday. What is it with that place and Sundays? I hate the ER, hate it. They didn't do the right thing the first time we were there, and I'd venture to say they didn't this time either, although this time was not near as severe as the first.

Anyway, in the span of two days, they poked the living daylights out of you trying to start and IV. You were poked in the head, hand, arms, legs, groin. At least 40 times or so. One of the nurses there, referred to it as "the massacre", which it really was the truth! The Child Life Specialist who gives out the Beads of Courage gave us 50 black beads to represent each poke, she wanted to be sure we covered them all. That's insane. Finally you had a heart cath and they got a central line.

The cath showed your pressures were questionable. The next day you got crankier and more upset. Before we knew it - you were in heart failure and they were intubating to give your heart a rest. Your lactic acid levels that are supposed to be around 1, were almost to 12. You were VERY sick, and it happened so fast.

I remember holding you outside in the sun in the unseasonably warm weather, that last day that we were home. Your Dad was putting up a string of Christmas lights, we were soaking up the gorgeous weather. I noticed the next door neighbor smiling at me as I held you in my arms, guiding your Dad to hang them straight. I looked down at you, knowing we were taking you in to the ER in just a few minutes, as you had missed your last feed. But he needed to finish up, and I needed that extra long warm cuddle in the sun. It's bittersweet, to remember those moments so vividly, and remember exactly what I was thinking during the moments of uncertainty.

Your stats vary this month. You are weighing in at 11.5 pounds or so, depending on how much fluid you are retaining. You are 23 inches, your hair is impressively long and people always ask if you were born with that much. The answer is no, but what you haven't grown in weight wise you managed to make that up in hair. You were wearing 3-6 month clothes - although now with all your lines and wires all you wear is your size one diapers. Your eyes are still dark blue. I think your awesome hair has lightened some at the roots, but we shall see. 
We sure had a roller coaster of a month. Going from being told you may need a transplant, to being told we have a few months before our next move (which is likely surgery), its a pretty wild ride. Boy, you like to keep us on our toes!

My favorite part about you is your dimpled smile. Its been a bit since you have felt well enough to show it, but it's starting to come back! I am so proud of how strong you are. In your five short months you have taught me more than I could have ever bargained for. I've learned about trust, strength and mainly patience. Who knew you were going to be such a good teacher?!?

This journey gets more interesting as each month passes, with the highest of highs and the lowest of lows. I want off the roller coaster so! bad! But at the same time, if that took me away from you - then I'll stay on for the ride. Someone just find me a barf bag, would ya? ;)

I am beyond thrilled that our steps continually are directed in the ways we should go. So often things seems questionable or scary but if we pray for clear direction, we are always clearly led. God is good Caysen!

We are hoping to be able to take you home for a bit. We have big plans to strengthen you, feed you, and most importantly cuddle the snuggles out of you. We can't wait, and despite all the unknown we still have to just rest and know that it will get taken care of when it comes. 

Love you to the moon and back,

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