Tuesday, June 22, 2010

The Tricks Of Time

Should any of us EVER feel like we are having a bad day, may we bite our tongues. I am in a heap of tears, trying to understand...


Go. Go now and hug on those you love because as I wrote below, before I ever learned Ellies story, you just never, ever know...
May God hold little Ellie in the palm of his hand as she finishes her journey home....

So I'm not going to lie.  Not feeling so good today and I wonder if it's that I am truly sick or if its the stress that I have been harboring lately rearing it's ugly head.  Ever since I returned from Costa Rica I have had this overwhelming inclination that something is going to happen to Paxton.  Every ounce of me says hold him just a little longer, rock him to sleep instead of letting him put himself to sleep, carry him wherever I go and balance him on my hip while pouring orange juice just to not have to put him down.  I sat on the couch at the end of our bed last night feeding him in the dim light just staring.  I couldn't take my eyes off of him. I listened to him suckle. I smelled him, played with his hair and prayed. Prayed that whatever this feeling is that's residing in me right now passes and quickly.  I am finding it hard to differentiate whether it's "mothers intuition" or just a phase.  I've been hearing sad stories lately and that may be contributing. He's growing before my very eyes, which for having half a heart is pretty miraculous, so that may be contributing.  In any case "I no like it".  It's no secret that I am still learning to live in the moment, to not let fear take over the joy of today and like the ocean, my ability to do so ebbs and flows.
This year has happened in such a blur that maybe now seeing him so seemingly healthy is setting in.
Nostalgia is setting in as we near the time in which I found out he was sick. I think back to last year at this time and revel in the ignorance that was my bliss because I had no idea what lie ahead as Summer rolled in.  I just rubbed my belly giving thanks that we didn't lose this baby. That I had made it to seven months.  I had finally allowed myself to shop for him/her.

We spent the fourth of July full of excitement as our new addition had just a little longer to go. Talking about "next year at this time, we would have THREE wee ones running around" and we will. For that I give thanks. I also give thanks because I realize who I was before his diagnosis and I know who I am now.  I never take a single moment for granted because you really do never know.  I don't know Paxtons outcome just as I don't know Austin and Masons.  I know that the chances are obviously higher for little man. I know that life doesn't have any rhyme or reason to whom it chooses. The suffering I know is happening as I write this makes no sense and I know that I am no better than any other person out there going through it, so why not me...what if me...
They say God doesn't give you anything you can't handle and so far I have prevailed, but the mere thought...oh lord the mere thought.  I don't know what to do with it.  I don't know how to squash that fear.  I feel like it's all gone so well for what it is, that I keep waiting for the rug to be pulled.  Negative, I suppose.  I think it's just more fear.  

How did I get so lucky to have the HLHS baby that thrives....

I'm scared. Full of fear. Full of love that I cannot describe.  Full of a need to be able to hand this over and trust in the journey.  So far we have not been steered wrong, but there are no guarantees and as I listen to my little man squawk tears well up in my eyes. He is here. For however long and I must be ok with that because there is nothing I can do to change HIS plan. I don't want to spend our days in fear and while I most certainly know that is easier said than done, I will try. I will cry when I need to cry. Be scared when I need to be scared. Cling a little tighter when I feel the need, but I will try.  I am a work in progress, always will be, and HLHS is a work never to be completed really. It is every day all day and I am ok with that. Proud of how far I have come when I think of the mess that I was when we first brought him home.  Time takes the edge off and I am hoping some more time will take the edge off this panic that surrounds my heart right now.


On a medical note we are headed to Tampa tomorrow because Paxtons g tube appears to be infected. We are ready to get that dang thing out since he doesn't use it to eat. However he is still on 12 medications a day, all of which go through the g tube so I am not sure if that's a possibility or not. I am pretty sure he would not be ok with 12 meds being forced down his throat on a daily basis. There is  a thing called a "mickey button" that they can put in instead of having the long tube that you all see in pictures. This is just a little button and more importantly less for him to pull on since he is hell bent on doing just that.  
(You can see his g tube in the picture below)

On June 29th we will be heading to Tampa again! Where Paxton will undergo sedation for a CT:

Cardiac computed tomography (to-MOG-rah-fee), or cardiac CT, is a painless test that uses an x-ray machine to take clear, detailed pictures of the heart. This common test is used to look for problems in the heart.

Since Paxtons Glenn surgery he has had a lot of extra blood flow from his head.  It gives the appearance of a sunburn. While this is normal for a few weeks post op, his has lasted months. Just recently we have noticed improvement in his redness so I am hoping he has grown accustomed to the new blood flow from surgery and that it just took him longer, but the other possibility is the narrowing of his right lung artery.  Prior to his Glenn there was already narrowing detected during his cath. At the time it was nothing to be concerned about, but with the redness lasting as long as it has, his doctors feel a CT should be done to see if there has been more narrowing.  I am hoping and praying since the redness seems to have subsided some that this isn't happening, but already having detected some has me concerned.  
As always, I will update when we know more.

Our other two boys are doing well. They are enjoying being out of school. They are more than ready to go on "acation" (vacation) in July and are growing like weeds.  Both are pee pee trained. We are working on the other.  Both are head strong wild boys boys. Austin is more sensitive than Mason, or has been in the past, but it seems they are both turning into proteges of their Momma in the sensitivity area (much to my husbands chagrin) Mason is losing his baby fat, good bye to his kashi's : ( Austin is literally a little boy now. 
 I don't know when it happened, but my babies aren't babies anymore and while that is a hard pill for me to swallow, I am so enjoying watching them bloom into little men. Their imaginations are running wild. Their brains are sponges. They are little people now with thoughts, opinions, demands and feelings. It is SO much fun! and I AM the luckiest woman alive!

~ J


The Simmons Family said...

That was a great post!! I feel that way ALL the time... the feeling that I just need to take the extra moment to snuggle Owen.

Owen has the Mickey and I LOVE IT!! I wouldn't change it for anything else. Even if he did eat (which he doesn't).. I wouldn't want to force him to take his meds. It's too much.

Oh.. and Owen's face turns beat red and scalding hot and nobody knows why. Let me know if they figure it out. I just assumed it was a reaction to one of the zillion meds.

Good Luck in Tampa!

Anonymous said...

You are by far the most amazing woman I have ever been lucky enough to meet. You are so positive and such an amazing mother / wife. I pray for little Paxton all the time.


Gretchen said...

Beautiful and honest post!

Praying for your trips soon and for health for all of your little darlings :)

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