Sunday, February 25, 2007

The Dark Times

This post is/was very difficult to write and I contemplated not writing it at all, but that would defeat the purpose of the blog.

This blog is a personal history for my family. And along the way, I have picked up some readers that have become online friends and I have offline friends that get their Doss & Jorja news from the blog.

Plus, the blog is cathartic for me.

So, to not write the about the events of the weekend would be a disservice to us all.

To put it bluntly, this weekend was not good for Doss.

I was able to take the ups - glucose levels rising to normal - and downs - having to be intubated - since the birth, in part because of the advice I received from you, the reader.

But I was unprepared for what happened this weekend.

Friday night, we kissed Doss lightly on the head and returned to P.Pie’s room, with Jorja in her Lexan and chrome chariot safely in tow.

Saturday morning I arrived at Doss’s bedside to dire faces. The nurse practitioner informed me that Doss had seizures during the night.

At first, I didn’t realize the depth of the problem. In fact, I didn’t understand the problem at all. Lots of kids have seizures, most of which can surely be cleared up by one drug or another.

It was explained to me that the seizures were most likely caused by bleeding on the brain.

Anything with the brain is bad. That I understood.

So the neonatologist ordered an ultrasound of Doss’s head. Less than an hour later, the ultrasound was completed and had been read by a neurologist.

And indeed there was bleeding on his brain. They grade brain bleeds in levels zero thru four.

Doss’s bleed was a level four.

Saturday my despair and sadness were profound. But our neonatologist has pointed out some good things and that all hope is not lost.

As I write this, the bleeding appears to have stopped as has his seizures. Doss is stable and appears to be sleeping comfortably.

I am a realist and I know that we aren’t even close to being out of the woods. It will be an uphill struggle which has costs that are almost unbearable. And even after these prices have been paid with blood, sweat, and tears, it still may end badly.

If I could lay down my life in exchange for my son’s well being, I do it in a heartbeat.

Every time I think I’ve cried myself dry, I find some untapped spring within my soul. And whatever the outcome, good or bad, I will cry some more.

[ed. note: these events have also made me somewhat bitter and angry - as well as a little mean. To those in my personal life, if I am short or angry with you please forgive me. I will try to do better.]


Blogger Ann said...

After we 'delurked' together... I've watched and waited from this other side of the blog world. Anticipation, Excitment, Worry. All I know to say is that I'm sending as many prayers as possible from Alabama for you and yours!

2/25/2007 9:31 PM  
Anonymous Sarah, Goon Squad Sarah said...

I am so sorry. We're sending all of our good thoughts your way.

2/25/2007 10:01 PM  
Blogger Catherine said...

I'm not sure how I came across you blog, but when you said you're from Colorado I was forced to lurk a little. And now... now you & your family need all the well wishes you can muster. I don't dare to say I understand what you're experiencing. Only that one more family is pulling for yours.

Your babies are beautiful.

2/25/2007 10:03 PM  
Blogger moe "simon metz" berg said...

i know there's not much i could leave in a blog comment that would console you as you go through all this. i just wanted you to count me as one of the many people all over who are thinking about you and your family and wishing you, p pie, jorja and doss peace right now.

hang in there. you guys are certainly not alone.

2/25/2007 10:52 PM  
Blogger honglien123 said...

I wanted to email you privately, but you don't seem to have one posted. I'm not sure I want this comment to be posted, but I'm writing it here anyway.

I'm so sorry to read that Doss is not doing well. You have every right to be bitter and angry and mean. Your son is in the NICU! What would anyone do in such circumstances? To say be patient and have faith is so much easier than actually having to do so, because maybe, just maybe, things won't be alright. Perhaps they won't be ok as we all hope they will be.

I have relatives and friends who have had terrible tragedies happen to them. I have friends who have lost young children or who have children who aren't "normal". They have been angry, they have been bitter and they have cried. They have not been saints, but they have been human. They have been parents who have made the best of what they've been dealt as will you and P.Pie, because you're parents now. That's just what good parents do for their children. You are doing great.

That's really all I wanted to say. That and please remember to take care of yourself.

Wishing you, P. Pie, Jorja, and particularly Doss all the best. Have faith in yourself and those you love.


2/25/2007 11:02 PM  
Blogger Laura said...

I have been reading your blog for some time, never posted yet though.

My twins had a difficult pregnancy and were at risk the entired time in womb,and were born at 32 weeks. We went through a lot! Since this struggle I have become a volunteer at my NICU. I am so sorry to hear about your sweet son's problems. Please do not loose hope. It's important not to sugar coat things, but also important to remain hopeful and strong. I have seen babies with grade 2 bleeds have issues and those with grade 4 do fine, its all very hard to predict. It can go either way. What is important is that it seems to have stopped and things are improving. I will have him in my prayers. I do not say that lightly. I don't often post on strangers blogs, etc... LOL I just feel compelled to reach out at this time, and say sorry, hang on. The NICU ride can be so difficult exspecialy when you are unprepared. You certainly love these babies, we are all unprepared for that total feeling of helplessness, and fear! Anyway, I will be watching for updates. I hope to see Doss turn the corner, may you find comfort while waiting!


2/26/2007 12:01 AM  
Anonymous Christine said...

Right from the first sentence my heart dropped to my stomach. I'm so sorry you and your family are going through this. I'm praying for you guys and for Doss.

2/26/2007 12:20 AM  
Blogger dadinprogress said...

Rob, sorry it was a tough weekend, but it sounds as if things might be looking brighter. All I can tell you is that you have the right perspective -- everything you're thinking and feeling is normal -- and the fact that you're focused on what you can do for your son instead of asking why someone is doing this to you and your family -- will help you through. We never receive what we can't handle, I firmly believe that, so rise to the challenge and stay strong for Doss. Best wishes and prayers to you.

2/26/2007 7:20 AM  
Blogger Jules said...

I am crying as I read this....prayers and love and support are coming through the internet to you.

These NICU babies are strong, and can get through even the worst things...I saw it so many times in the 8.5 wks we were there. Keep the faith and love on that little one like no tomorrow...he can feel your stress and there and love him, and love on sweet Jorga too. I know this is so hard on you...please know everyone is sending good vibes and mojo your way.

2/26/2007 7:30 AM  
Anonymous Mike from Up North said...

My thoughts and prayers are with you and your family, Rob. One of my brother's twin girls was very ill at birth and spent about a month in the NICU. She is a big, healthy kid now and I hope you get the same experience.


2/26/2007 8:23 AM  
Anonymous Gidge said...

I have sat here for several minutes trying to think of something poignant or meaningful to say to you.
I can't think of anything.

I am so sorry. You have the deepest good wishes my my heart...and I will be thinking of sweet Doss.

2/26/2007 8:45 AM  
Blogger Becky said...

I've been there. I've felt what you're feeling. I'm here ... sending good thoughts and strength to all of you.

2/26/2007 8:50 AM  
Anonymous Crystal said...

I have not gotten the chance to say congrats on the birth yet, but what a rough road you are having with little Doss! You will all be in my thoughts. The NICU experience is so scary. I felt so helpless on yet so torn with one NOT in NICU. To go home without one is such a heartbreaker. I'll be sending all my positive thoughts to CO in hopes that this brain bleed is the LAST down and it will be ups from here on out!
PS what a great picture of Mommy and baby!

2/26/2007 9:00 AM  
Anonymous Anonymous said...

I love all four of you sooooo much!!! If there's anything I can possibly do for you during this time, all you have to do is ask.


2/26/2007 9:38 AM  
Blogger radioactive girl said...

I'll be praying for you/wishing good things for you. Even though we have never met in real life, I am sitting here crying for the pain you must be in. I am so sorry!

2/26/2007 9:45 AM  
Blogger Denver Dad said...

There's not a whole lot you can say to make anyone feel better about a situation like this. It's difficult and a few words from a stranger doesn't really help that. Just know that my best wishes are going out to you and your family. If you need to talk or need a break, send me an e-mail and I'll pass along my telephone number. I'm not making this offer lightly, so feel free to take me up on it, if you need a shoulder.

Take care. Best of luck to your little guy.

2/26/2007 9:45 AM  
Blogger Stacy said...

Rob -

What a beautiful picture of P.Pie & Doss. Take those pictures in the NICU - no matter how hard they are to take - trust me, you will cherish them later.

I'm sitting here with tears in my eyes. You see, I have been there, too. Tanner had a Grade III - IV bleed. We were told all of the horrific things that could mean - and I know that many kids who have bleeds do go on to have those problems. But, not Tanner. I can't promise you what will happen, but I hope I can give you some hope.

To this day, I worry about the brain bleed. How does it affect him? Will we see ramifications when he is in school? Tanner had other problems and required a liver transplant - so I have a whole website dedicated to his medical history. You can see pictures of a perefectly normal, almost 3 year old boy who had a grade III - IV bleed here. I hope this gives you hope.

Thoughts and prayers to your family.

2/26/2007 11:12 AM  
Blogger creative-type dad said...

Sending lots of prayers and thoughts to you and your family....

2/26/2007 2:17 PM  
Anonymous cry it out! said...

Our thoughts are with you guys this week. We're sending you our best and letting you know you're not alone.

2/26/2007 2:53 PM  
Anonymous Anonymous said...

Rob and Jen,

We worried that you didn't come home this weekend, and we have been waiting for an updated blog to find out about Doss. I didn't want to seem like a nosy neighbor, but I am what can I say. Give your strength to your son and daughter and let them know the love that you have for them is everlasting. They know this in the cuddling and kisses. In a year, you will look back to this time and be thankful that time passes quickly. Hurry and come home Doss and Jorja we want to play.

Nancy, Moises and Aaron

2/26/2007 3:05 PM  
Blogger Denver Dad said...

Rob... my comment from this morning might have gotten eaten, but I wanted to just pass along my best wishes to you and your family. I hope that little guy of yours gets to feeling better very soon.

In my previous comment (the one that might have gotten eaten), I offered what little help I could provide. I know we've only exchanged a few blog posts in the past few weeks, but we're neighbors, so if you need anything, let me know.

robbneu (at) earthlink (dot) net

Take care!

2/26/2007 3:16 PM  
Anonymous Anonymous said...

I've been reading your blog from the start - I come from a big family and am soon embarking on the trip of motherhood myself.

There are people in Toronto hoping and praying for your little guy. He has more guts and strength than anyone knows.

My aunt is a neonatal nurse, and wants you to know that she sees amazing things happen every day. Keep the faith!

Take care,

2/26/2007 6:54 PM  
Anonymous Kaz said...

Hey, guys - like many here, I don't know what to say. I'm not really sure there is much to say. I'm not really sure there is much you want to hear beyond our thoughts, like everyone here, are with you and your babies. And they are.

2/26/2007 7:37 PM  
Anonymous Kate said...

My thoughts are still with you guys, I hope Doss has shown more improvement today. If there was anything I could do to help, I would do it in a heartbeat.

Take care of yourself,

2/26/2007 8:26 PM  
Anonymous momto3cubs said...

It's important to record the dark times, too.

I hardly "know" you, but, as a fellow parent, I'm aching for you. I'll be saying lots of prayers for Doss. Keep us posted.

2/26/2007 8:46 PM  
Anonymous Anonymous said...

Hey guys, I spoke with the Duke Saturday and was crushed by the news. I will keep a close watch on the blog for more info, you and the new kids will be in my thoughts for ever, keep one eye towards the SUN and the other towards your SON, both were born of the life we all share and therefore will be with you forever no matter what happens.


2/26/2007 9:09 PM  
Anonymous Mike C said...

Rob and Jen,

It is heartbreaking to see little Doss lying there. I can't begin to know what you are thinking and feeling right now, but I do know that little kids are tough, resiliant fighters - Doss is one of them. Hang in there, we are thinking of you...

Congratulations on your beautiful babies!!


2/26/2007 9:40 PM  
Anonymous thordora said...

Good and happy thoughts your way and for Doss.

2/27/2007 11:17 AM  
Anonymous Anonymous said...

Congratulations and also good luck! Our prayers are with you!
--Melissa, Spicewood Texas USA

2/27/2007 11:53 AM  
Blogger Mom on Coffee said...

I'm new to your blog via Plain Jane Mom, but wanted to add my thoughts and prayers to the others headed your way.

2/28/2007 6:34 AM  

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