Tuesday, August 27, 2013

Caysen: Two Months. A Letter.

Another roller coaster of a month has gone by, and you are continuing to grow and change before our very eyes.

This month the roller coaster started out with a warning from one of your neonatologists about your brain. We knew there was a significant bleed, but had never been told that the ventricles were swelling. In addition to that information they discussed the possibility of needing a shunt placed in your brain. 

After more waiting and testing and even more praying, we were told the ventricles were decreasing in size and the blood was clearing. Another example of God's healing through you and how beautiful it is! 

In this time you have also gotten a G a tube for feeds, since you just couldn't keep up. It's a lot of work eating all the food they want you to eat! Its hard for you to keep up with how many calories you need and how many you burn with your little heart working overtime! When you had the tube placed they also checked out your other organs and did a liver biopsy since you have been stooling white for a week. White stool means absence of bile, which is backing up in your body. You are noticeably yellower/tanner these days and that is what we have to figure out! 

You are continuing to be more awake, tracking things, even a few awake smiles. You are supposed to get 70ml every three hours, you are on five medications. You still rarely cry. You weighed 8lbs and 9oz at two months and are 22inches. You are still in newborn diapers, wearing newborn and 0-3 month clothes. 

Mommy had to return to work this month. It has been so hard, having your heart in multiple places. I just want to sit with you, be with you and work on getting your food taken by mouth.  I have had to learn to give up even more control than what I had, and being away from you is so hard. I know you are in good hands though. 

Caysen, I don't know how to even put into words how much you have taught me in your two months. You are a lesson and a reminder to me daily how precious life is, how important it is to savor every moment, every breath, every feeding, etc. Each new day is a reason to celebrate that we have been graced with another sweet day with you. You are our sunshine, our hope and joy, our testimony that God is so so good. 

As long as I'm living my baby you'll be,

My sister thinks Caysen has a striking resemblance to Cam from Modern Family. I'll admit - I do see it! :)

Thursday, August 22, 2013

Camden, Three Years. A Letter.

Wow. Three years? Is that even remotely possible?

You have changed so much this year. You are smart, spunky, string willed and so very sweet.

We spent much of the past year preparing your two year old self for your biggest life change yet - adding a brother. We talked about it so often that I think you were truly ready. We prayed for him nightly, and we would talk about sharing toys with him and giving him your old room. Now that he has spent the first of his life at the hospital, I'm not sure how much of it you "get". But you will ask to hold him. We don't push you, we wait until you ask. And when it does happen it's pretty heart melting! I can't wait to really see the two of you together. 

It's amazing how much you pick up these days. You are too smart for your own good. You have been spending extra time with your grandparents, whch has resulted in you complaining of your back hurting. You told your daddy the other day you were "going to go have coffee with mom and dad", which is what your grandma does on weekdays before work.  It goes to show you are listening when we don't think you are!

You talk SO SO much. You are adorable when talking, you can't say your Ls or your Vs well, but we are getting there! You love visiting brother in the hospital, and you love spending time with your cousins. 

You are wearing size 2T an 3T, despite the 3Ts being a little baggy. We finally got you to wear flip flops this summer. We have noticed your size 6 shoes are getting tight. You still love pouches, and are mostly potty trained. You told us not too long ago that you are afraid to poop on the potty. Here's to hoping that doesn't last too long! 

You are a good sleeper, and you still don't leave your bed without calling us to come get you. Despite having your world turned upside down with brother in the hospital, you have adjusted fairly well to the new routine, and can still nap with the best of 'em. 

You love practicing your flash cards with daddy, playing in your sandbox an demanding you get your way. 

Camden, you are still our first little blessing, the one who made us parents. The one who teaches us day by day more than we could have expected. We are so proud of you, and so thankful that God lent you to us. If there is anything I want you to get out of this broken world, it's just how great our God is, and how much he takes care of us. That has been shown to us so much lately, but we know you are too young to really remember or understand it. 

Continue learning, growing and being a silly little boy that you are. You are our joy, our excitement in the morning, our heart, our little snow cone lover. We are so proud that we have the honor of being your parents!

Friday, August 16, 2013

Hi Ho, Hi Ho...

In just a few days I will return to work. It happened so fast. 7.5 weeks and it is time to return. I am so bummed to leave little c at the hospital and I am just hoping and praying he will get awesome nurses like he has.  Its nerve wracking. Especially since his main thing is to work on feeds, and if he gets someone who patient with him he will get quite a bit down. But that's the problem, they don't always just have all the time to devote to sitting with my baby While he slowly eats, I mean, there are other children here. 

G tube is highly likely. He's off the phenobarbital and so so so much more awake. Pray for no seizures, ever! Buuuuut... his feeds just haven't increased enough. If he shows off something major in the next two days they may change their minds, but i kind of doubt it. And hey, if that means it gets us out of here, lets do it! 

I think if there was such a thing as NICU psychosis, I sm developing it....

Keep praying and following along on FB for updates!

Friday, August 9, 2013

You Think You Know...

You think you know, but you have no idea what it's like. Unless you have physically had your baby in the hospital for the first six weeks of his or her life. You have no idea how hard it is. How bad you just want your baby at home, so your family can be complete - and somewhat normal. 

You neglect yourself trying to get as much time in that small horse stall sized room as possible. You forget to eat, after all no food is allowed in the room. 

When you are with your baby, all you can think about is being at home with your big boy. When you are at home with the oldest all you can think about is the baby all alone at the hospital - being cared for by a nurse you just met yesterday, or just at shift change. It's hard - that feeling of being completely torn between two places and there not being enough of you to go around. 

In a week, I will return to work, with one kid at home and my newborn still in the hospital. That thought is simply nauseating, how on earth am I going to be in three places and not feel like someone or something is being neglected? 

Doctors keep giving us false hope about going home. The cardiologists come in and say its okay to go home with an NG tube. Then the neonatologists come in and say absolutely no way, that's too risky. The cardiologists say that he needs  to be bigger before he will eat better, and surely that can be done at home. The Neos say, too big of a risk of infection.

So we wait. Wait on him to eat better. Wait on him to be stronger and take his feeds by mouth. And just hope and pray that he gets to come home sooner rather than later. 

Sunday, August 4, 2013

I know it's blurry...

But I love this kid so much it hurts!