Hi ladies,
The good news is that our daughter, Zoi, just came home from the NICU this week after 5 weeks. She came home the same day our little angel Ari was cremated. I can't believe all that has happened and I know I still haven't processed it. Our surviving son, Alex, is still in the NICU learning to eat after his surgery on his esophagus. Hopefully he will be home soon too. My question to you ladies is this - does this get any easier? I am SO scared that something will happen to Zoi now that she is home. Before Ari passed away I thought bad things happen to other people, but now I am just scared. I keep Zoi by my side all day and night now that she is home and I can barely sleep except if she is laying on my chest while I am sitting in a chair, that way I think I know she is safe. Has anyone else had these fears? With all that is going on I haven't had time to see my therapist...Thanks as always for listening. And (vent), again, I am so tired of hearing people say "twins" - you'd think the NICU staff would be more aware of the difference.

Heather
Mom to Alex, ^Ari^, and Zoi born 2-26-09 at 34 weeks 2 days

I am still a paranoid wreck about my survivors. I totally understand what you're staying about thinking the bad stuff won't happen to you. I feel like I was caught off guard and was unprepared for that to happen to me, so I'm terrified to thing things will go smoothly from now on. I had to ban myself from reading other people's blogs about sick kids because I was convinced my children would get some horrific illness. I know it's all related to losing Spencer.

I can't tell you if it ever gets better, but after 18 months it's not really. I still go in their room several times each night to make sure they're breathing. And I had to get a house alarm installed and will not sleep without it on at night because I'm afraid they'll get stolen. I'm totally paranoid, I know, but I can't help it.

Congrats on Zoi being home, though! That's fantastic and I'm glad she's doing well. Hang in there...

Heather,

I am going through the same thing right now. Julia, Caitlin's twin, was discharged this past Wednesday. She is still on caffeine for her apnea, so we got sent home on the monitor. Even with it, I'm constantly going to check to see that she's breathing - this is not something I would EVER have done prior to what happened, so I'm really upset that I *am* doing this. I'm hoping that eventually I will grow out of it.

I am sorry that the NICU refers to them as twins. The staff at ours calls them triplets, and they didn't label Gabrielle Baby B - she is C, since she was born last. It makes a bigger difference that I ever thought it would.

Hang in there, and e-mail me if you want to talk.

Amy

Julia Evelyn, 2 lbs, 15 oz
^Caitlin Elizabeth^, 3 lbs, 3 oz (died one day prior to delivery due to complications of an encephalocele)
Gabrielle Rose, 3 lbs, 6 oz

Heather,
It is great to hear Zoi is home but I'm so sorry things are difficult. I had, and still have, the same fears about my survivors. I think the first few months after they were home it was more intense because I was used to watching monitors 24/7 in the NICU that showed me their hearts were beating, they were breathing okay, etc. For me, the fear has not gone away but I have learned to cope with it. They are 18 months old now and I am still petrified that something could happen to them but I can function through my paranoia . I guess once the worst imaginable happens the fear that it can happen again never leaves.
The "twin" thing is SO aggravating, our NICU was the same way, you would think they would have better training on bereaved parents. I hope Alex is home very soon.

Jessica
Mom to Parker, McKenna, ^Hadley^ born 10/9/07 28w5d
little brother Sawyer
and big sister Ashlyn
www.fourplusanangel.com

I am sorry to say that my survivors turned four on April 2nd and I still have a very intense fear that something will happen. I go in to check on them, I have a monitor on so I can hear them breathing. My daughter comes into our room every night, and I can't wait so I don't have to worry, it's all I can do to stay out of her room before that time because inevitabley I would wake her up. My husband goes in to sleep with my son when he wakes up. Especially my surviving son, every time he gets sick it's 100x's worse than everyone else due to his asthma and reflux. I try to talk my self into stayig calm. Plus he's still not great at telling me what's wrong so I obsess that something is wrong. Hopefully, that will get better. I too have thoughts about them being stolen or losing them in public. It does iase some though as they get older and are better able to communicate with you.

I'm sorry about the "twin" thing, I am absolutely astonished and disappointed that the medical community in general isn't more aware of the impact on parents of multiples when they call them that. I wish we could write an article for their professional medical journal from the perspective of the patient!

Jacob, Olivia, Benjamin
30 weeks 1 day

Congratulations on Zoi being home...there is no place like home for them.

It does get easier...only with time...

I held Nathalie 24/7 for about 12 months after she came home from the hospital... I didnīt trust the monitor (or me responding fast enough to the monitor), so she slept in my chest. She still sleeps in my room and she is 2 1/2 yrs... each cold is a worry, each tummy ache, each fall... because we know that horrible feeling of having them in the hospital and worst, the devastating feeling of loosing a child. My friends wouldnīt understand, they would tell me I was overly protective... I guess I was, but no one had gone through what I went through and they wouldnt be sitting next to an isolette if the "simple cold" turned out to be RSV...

It is easier now, when you learn they are strong and they can pull through it... but its a rough start...

Monique
Mom to 26.5wk triplets, born 09/14/06
^Nicole^
^Daniel^
Nathalie

Congratulations on Zoi being home...there is no place like home for them.

It does get easier...only with time...

I held Nathalie 24/7 for about 12 months after she came home from the hospital... I didnīt trust the monitor (or me responding fast enough to the monitor), so she slept in my chest. She still sleeps in my room and she is 2 1/2 yrs... each cold is a worry, each tummy ache, each fall... because we know that horrible feeling of having them in the hospital and worst, the devastating feeling of loosing a child. My friends wouldnīt understand, they would tell me I was overly protective... I guess I was, but no one had gone through what I went through and they wouldnt be sitting next to an isolette if the "simple cold" turned out to be RSV...

It is easier now, when you learn they are strong and they can pull through it... but its a rough start...

Monique
Mom to 26.5wk triplets, born 09/14/06
^Nicole^
^Daniel^
Nathalie

Heather,

COngrats on Zoi's arrival home (and what a beautiful name!) As for the paranoia- I have to agree with some of the others--it stays around for a long time. I actually told my doctor I think I have post-traumatic stress because there is not time to process the grief when you have other babies to nurture and take care of. You just keep suppressing it and it mainfests itself in paranoia. That is my theory anyway.

Once I got over the "will they survive" fear, then you start wondering about every little thing they do (or don't do)--is this normla/not normal, etc.

I don't want to scare you about the worry lingering--what I want to do is reassure you that it is normal FOR you to worry!! I had convinced myself that I was crazy--but now I realize (from this board and my doctor) that it is normal, given the situation.

You have been through a lot!! Enjoy each day, one day at a time!

Lisa
Mom to

BB 03/05/1997 34 weeks, 2 days
Dean Thomas 4 lbs 14.5 oz
Owen Andrew 4 lbs 8 oz

BG^B^ 09/29/2007 33 weeks, 1 day
Trey Samuel 4 lbs 1 oz
Marley Carol 4 lbs 15 oz
and our stillborn angel, Brody Brendan, 11 ounces

It will never get easier. UGH it sucks.
Even if Sweet little Ari was here on earth and you had full term triplets that had no NICU time and came straight home and everything else went perfect, you would STILL feel this way. The fact that you have lost 1 of your babies makes it even worse.
I have 2 losses under my belt but I do have 5 children and even with my year old I go in all the time to check on her.
I hold my breath until I see her chest move, or I put my fingers under her nose to feel her breath.
It is a horrible feeling but completely normal (again even if you did not suffer a loss).
My baby just turned 1 year old and I still have her sleep with me.

also I feel so bad for you that the NICU staff is saying "twins" ..that is just RUDE! IT should be in charts and just be known!


I am so sorry for your loss of ARI. You are in my thoughts.

Brooke

I'm so sorry that your little one is no longer here. And at the same time, congrats on getting Zoi home. What a weird combination of worlds to live in. Also, I'm sorry that the staff at the NICU is being so insensitive. I wish I could tell you to expect more from the outside world, but people just don't get it. I've only had two twin comments since my baby's death last week and it hurts. I am hoping for both of us that the pain turns into a sting as time passes. Again, I am so very sorry.

Wishing for some peaceful days ahead,

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