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,

Mommy

Transparency...

***I'm going to be transparent here. I'm going to write things down that I need to get out, so I can remember what I was thinking along this journey. Even if it means staying up late and getting less sleep, I still want to write it out. I want to remember that I'm still human, and to remember my raw feelings and emotions. They are still valid feelings that I have, and even though I know we were destined to walk this path and we will be protected and taken care of - I am still human.***

 

 

 

Sometimes I just want to fast foward the time. I want to be over and done with the next few surgeries. I want to know how Caysen is going to be. I want to know when he will be able to sit up, roll over, etc.

 

It is hard looking at other babies and seeing them hold their heads up, or hearing of friends' babies who are younger than him and are rolling over. Ouch. It really makes his delays that much more apparent. I tried the other day to get him to push back with his feet and "stand" on his legs with my hands supporting under his arms and around his upper body. No dice. He folds on top of his legs like a wet noodle. It raises questions in your mind, questions that you don't want to answer to, yet you can't seem to push out of your brain. Is that part of his little brain damaged? Will that ever work?

 

While we were in the hospital we were asked if he draws his legs up when he uses the restroom. I told them no. I had to explain myself, "he's delayed, so it's hard to say". I get tired of saying that. And, it's so hard to be patient. To see if and when he will reach those milestones.  Then I think about the next surgery. The "Big" one. The hardest. The one that will continue to set us back. The one that has the least success rate.

 

I am ready to be done with that surgery, and yet I dread it at the same time. So much difficulty comes with it - and he's still such a mystery. We can only hope and pray that he will go into that surgery as healthy as possible. Will all of his other "issues" get figured out well enough?

 

I guess I'm just tired. Tired of waiting. Tired of only getting 4-5 hours of sleep a night. Tired of pouring all my energy and everything I have into my family and housework and things of those nature - and still not having enough to go around. I'm tired of working in a place where people come in for treatment daily just because they don't want to exist. The irony isn't lost on me that I work with people who no longer want to live - and then I go home and fight like you wouldn't believe for my little boy who I WANT to live a very full life. Don't those people know what they have been given? Life is so precious. Others complain about a stomach bug or a common cold going through their family.  I can't even begin to describe what I would give for that to be my biggest concern. They're worried about a tiny fever in their baby, whereas my life is consumed with oxygen saturations, feeding pumps and medications. Shouldn't people be more grateful for the blessings they do have? Hearing people say and talk about things like that? Tiring. Just tiring.

 

It is sometimes so hard to appreciate the small victories, to look at him and realize how good he looks and how far he has really come - when all of that can be overshadowed by the path ahead of us. It's a very gloomy and foggy path with no real direction, one that you wouldn't want to travel down by choice but you have to because its the ONLY way. And it seems like you're walking backwards sometimes, because you're moving so slowly.

 

Daily, I have to remind myself to appreciate the small victories. Tummy time that didn't end in horrible tears. Smiles from the little guy. Tolerating one of his feeds like a champ. If you don't cling on to those little things, you drown in those bigger and scarier things. You have to remember to take it one day at a time. You look too far ahead and you get overwhelmed. Like the way you feel when you are on top of a really tall high dive and about to jump. It seems so easy - until you look down and see how far you really have to go. It makes you want to back up, change your mind, cower around the edges, or not even jump.

 

Unfortunately, we have to jump. We have to take this path. And as much as I want to see the future, I also don't want to wish away this sweet little baby. He is so precious, so incredibly strong, and such a little miracle. Looking at him, I am reminded daily of God's grace. What Satan tried to use for evil, God has worked miracles in and through him. So, despite the fact that I am tired, I am weak, I am so! over! it! - we are truly lucky to have the opportunity to walk this journey. We are blessed to still have Caysen, and to continually learn each day what it means to have such a wonderful Savior.