12.08.2008

Survivors Guilt

Today my little family moved up to the Surgical Inpatient floor and out of ICU.  This was such a huge step, and I have finally exhaled.  As if we weren't freaked out enough after our mediastenitis conversation with Dr. Ray-of-Sunshine the other day, the surgeon who removed the battery from Hazel the night we came to Children's (one million years ago) came by to visit her.  He told us then how scared he had been when we first walked in, how he didn't think that she would make it, and how this sort of scenario is the one that he dreads.  I'm sure glad that he didn't tell us that before now.  

Leaving ICU was very hard for me.  I'm so conflicted, feeling so joyous and blessed that we are able to walk out with our Hazel at our side, but I'm so sad about leaving all those other babies behind in there.  I wish we could all walk out together.  There was one room I walked by every time I went in or out of the unit.  The baby in the bed was so tiny that you couldn't really see her underneath the pile of blankets and tubes.  I only glanced in a couple of times before I quickly looked back at the floor, ashamed that I violated someones privacy like that.  I have no idea who this little girl was, why she was there, or what her prognosis was.  I can only speculate that it was not good.  She was intubated when we arrived and her whole room was already decorated with all of the comforts of home.  When we left, she was in exactly the same place.  She was often alone in her room, as I'm sure her parents had to continue working and perhaps caring for other siblings.  Sometimes a woman was sitting there by her bedside, but she was unable to hold her.  The thing that kills me is that even though she was this tiny baby, under a year, she was in a bed instead of a crib.  I can only take that to mean that there was no chance of her waking up and becoming more ambulatory anytime soon.  Today on my way back from the bathroom I looked  for the hundredth time at the paper letters that someone had taped to the door of her room.  It said, "ALOHA".  It was only this morning as we left ICU behind that I realized that aloha means both hello and goodbye.  I have cried so many tears for that little girl and her family today.  I don't know that I will ever forget her, as she is forever tied to Hazel's life.

12 comments:

Anonymous said...

I do not know you but have been led to your blog by a "mommy board". I have read Hazel's story and your updates and have completely identified with the things you are writing. First, I am so sorry you and your family had to go through this but am elated at how well Hazel is doing and overjoyed for you.
I can completely understand how lucky you must feel and how hard it is to watch other families go through what could have been you.
My daughter has had some health issues this past year that thankfully, turned out to be not as serious as we were worried about. Throughout the testing and diagnosis process, she was under the care of a hemotologist/oncologist at a large children's hospital. My DH and I watched so many children and thier families, the same ones in there everytime we went. The same little ones hooked up for hours to get a blood tranfusion or meds and everytime we left,I would feel so thankful yet almost in a way guilty that all of those children and thier parents were going through a terrible terrible time and for whatever reason, my daughter ended up being OK.
Sorry this is so long but I just can help identify with you. I could see myself writing the same things you are.
I hope Hazel continues to do so well and I wish you and your family a little relaxation and peace.

Corleigh said...

I am happy to hear about the news.
Hazel is amazing!

Drama queens mum said...

Hi. A friend of mine fwded your blog to me today. I'm reading thru' it all now. I'm so glad she will be okay. I have a 16 & 1/2 month old daughter & she's always putting things in her mouth. Like all kids. I'm going to pass this blog on to people, so they can follow your family & see how Hazel is doing & also to warn people about the dangers in those batteries. I will also be following. Reading your blog makes me want to do something to make a difference. Maybe volunteer at a hospital & sit with kids that can't have their parents with them & to just be there for them. I'm also from the Boston area, but now live in NH.

Anonymous said...

I was not able to check internet for the last few days and kept thinking about Hazel and how she would be doing. I cried reading that she is fine and that you will soon all be back to normal life.I am soooooo happy for you.

Magoon Family said...

I don't blame you for feeling this way. I would too. It is a mixed blessing to move out of the ICU but still see so many babies left there. Knowing some of them may never go home is the hardest thing to think about. I feel for all those parents. I wish I could sccop them all up and make them beter. Just rejoyce in the fact that you have your little one and she has come so far and defied so many odds. Hug and kiss her each day and appreciate what a blessing you have. Don't forget those other babies. They will be your reminder of what God has given you.

NuriBadilla said...

The story of all you had to pass trough make me cry. You are such a strong family!!!

Hazel, her mommy and daddy made it!!

I can picture this little girl you told abut in my mind.

Love from Costa Rica

Hazel sigue adelante!

Anonymous said...

I don't think these things make sense in the end. Use your power here to ask that people keep this little girl in their thoughts.

I was wondering if you have plans to try to work to make batteries safer or if there is even any work like that to do? Why are they so easily corroding? Aren't there innovations that could at least somehow protect these smallest of batteries so if a child does swallow one, there is more time before such harm is done? I'm sure you have thought of what to do with your new knowledge and I don't mean to pressure you but I'm wondering now if there is a way to harness this group of moms who are glued to your story so that we can help children.

I continue to think of your family and I am admiring, though it's through tears, your writing and your ability to try to find sense in all of this.

The Ryan's said...

I am yet another stranger who has been following your blog. I just wanted to say how beautiful your daughter is and how happy I am that she is doing so well. I have shared your story with everyone I know with kids. I have a 13 month old and I can't imagine what you are going through. You 3 are very brave. Thank you for sharing your story (intensional or not)it has really changed me. I think at some point we all start to take the smallest things for granted and it's stories like this one that really bring you back to reality. I am so glad that your baby girl is doing so well and I hope she continues on this road to being back to perfect soon.

Anonymous said...

I, too, am I mommy who was giving your blog information on a mommy board. All I can say is how thankful I am that you shared your story. I am so sorry that you went through all of this with Hazel, and that she went through this whole ordeal at such a young age, let alone at all. I wish your family the best, and I am very happy to learn Hazel is recovering quickly.

Amnesty said...

I am glad I wasn't sent this link until she made her recovery...now I can go right to being happy and relieved for you!

Heidi Mendiola said...

Just letting you know you are being thought of....

-a mommy in Minnesota :)

Anonymous said...

my daughter told me that"hazel the shark" was in children's she met you and hazel @ the halloween party from your babies group.i'm so happy for your family that all is going so well for "hazel the shark" (she's so cute in the pictures). you have done a wonderful thing sharing your story. i'm an er nurse and will keep this for educating young families of this hazard. pcnic