3.08.2008

The burning question

The question on everyone's mind I know...how are we doing? Well, I've always been very honest on this blog, even if I was writing something that someone might not like or might show a side of me I didn't want to show, I'd write it anyway. I figure if someone doesn't like what I have to write about my life then they can choose not to read it, which is fine.

So here goes...this week has been really hard. When Zoe first died, we were thrust into making the necessary arrangements, we had family and friends visiting from all parts of the country, food being brought over, and so on. After the service, slowly, people started to return to their homes and their lives, but we still had a few lingerers to help Richard and I get through our days with Avery and Lily. While Richard has not yet gone back to work, our schedule is kind of finding it's way to our new "normal" and it is awful. You see, I have always been a bit of an overachiever...so when infertility struck we met the challenge head on and what do you know...triplets! Then we met that high-risk, high order multiple pregnancy challenge head on...ate all the right stuff, gained all the right weight, went to all the right OB and Perinatal appts, read all the right books, etc. Then my body decided - no more! And out they came at 25 weeks. Most of you know the rest from this point having read my blog from the beginning. (If anyone ever wants to start back at the very beginning you can go to our original Caring Bridge site ) The NICU experience and experience of having three very critically ill little girls was frightening but again...we faced that challenge and settled into that life of living our days (and sometimes nights) at the hospital for many months.

When Avery and Lily came home they did not come home as "normal" babies - they had apnea monitors, feeding tubes, and pretty serious feeding issues. Richard and I jumped right in to our new roles as nurses/therapists/parents...and I for one prided myself on being able to get an NG tube in my daughter's nose and down to her stomach in less than 10 seconds with minimal crying. My new identity was forming...I couldn't be the superwoman pregnant lady I wanted to be...so now I would be the superwoman triplet mom of special needs girls. There have been many, many struggles along the way but as I look back over the last fourteen months I've realized that I truly have put my all into my girls...and Richard has been there every step of the way. We vowed that they would have the best therapies, the best doctors, the best caregivers (a.k.a. grandparents) and if new issues arose we would face those head on with the best of the best we could find for them.

This continued when Zoe came home. There was the relief of my guilt I often had about not being able to visit her every day as Avery and Lily needed me at home with them and taking them to the hospital an hour away every day just wasn't an option for us. With Zoe home we had home nursing care for her but that didn't mean we were hands off...quite the opposite as we wanted to make sure that we knew every detail of taking care of her and that she felt she was at home with her family and not just in a nursing care facility. I continued to pride myself on my ability to manage her home care between the round-the-clock meds, breathing treatments, and therapies...the ordering and stocking of appropriate medical supplies & meds, scheduling of follow-up appointments and assessments, Speech school, feeding, and physical therapy "homework"and of course throwing in the more important mommy-daughter time; all the while making sure Avery and Lily got their fair share of "mommy-time" as well. The dishes might not get cleaned every day and the laundry might pile up...but Zoe had what she needed and she was happy. My schedule was set often at least a month to a month and half out between the appointments and therapies, I liked it this way. Richard and I didn't sleep much, but that wasn't important.

I made sure that Zoe was always where Avery and Lily were...she didn't eat by mouth but she was in her highchair just like them at mealtimes; she couldn't sit up or roll over but she was in the playroom just like them. Zoe was not going to feel like an outsider, she was an important and integral part of this family. Richard and I often feared that Avery and Lily would grow up and be closer with eachother than with Zoe. From very early on in the hospital they were co-bedded but Zoe could not be due to her critical condition. At home Avery and Lily, were and have always been together, when Zoe came home we made it clear that they were ALL sisters, they knew eachother, and Zoe was no different, despite her many medical conditions.

Now, the empty spaces on my calendar just remind me of how empty my heart is. Avery and Lily are both doing so well developmentally, they are even on par with many of their chronological peers...and yet I mourn the fact that the therapists will stop coming soon. My identity is in limbo...am I still a mom of triplets? Because that was who I was! I used to mourn not having a "normal" pregnancy or "normal" babies, now we've got two "normal" toddlers but that doesn't change the fact that I want Zoe back. I don't want to get more sleep because I no longer have to do midnight meds and breathing treatments. I don't want to have more free time to go on walks because I no longer have to deal with the logistics of packing three babies plus medical equipment to go anywhere. I don't want to be able to go out to dinner because I no longer worry if the grandparents are comfortable taking care of Zoe on their own in our absence. I WANT ZOE!!!!

I feel robbed, I feel completely empty, I feel like something evil just swooped in and stole her from us. I look at her pictures that were taken just two weeks prior to her death and I think back through each of those days...going back and back and back as far as my memory can take me and I wonder...what did I miss? What didn't I ask a doctor to do or test for that I should have? Did I wait too long to take her to the hospital because I was too confident in my ability to care for her at home and had such fear of her getting more sick by being exposed to the outside world? Did I talk to her enough in those last 24 hours we had with her? What didn't I say to her that I should have before she was sedated and then gone? Did I spend enough one-on-one time with her, did she know how deeply I loved her? Should I have not taken her for that 1 yr well baby check up so she wouldn't have gotten that first cold? What, oh, what could I have changed so that I could still hold her in my arms tonight?

I told her in those final moments that I loved her and that she had fought a good fight, but it was okay to let go. Those final moments before she was intubated, I remember she was trying to sleep, despite the annoyance that is Bi-PAP, she was playing with my hair and then holding my hand and every so often she was squeezing...it wasn't a squeeze as if to say..."Mom, I need you. I'm in pain. Help me." It was more of what a Mother does for a child to reassure her...her squeeze said to me "It's okay, I'm okay. Don't worry."

But I'm not okay, I'm not okay at all. I miss her so much my entire body aches. I can't think straight. I try to think back to the times before she was sick where I held her or gave her a bath or picked her up...I try to remember some moment of physical contact and I try so hard to feel what she felt like to hold...but I can't remember, my body can't feel that feeling. I try to hold Avery and Lily sometimes in the hopes that it will remind me what it felt like to hold Zoe, but they are their own people, unique and beautiful in their own ways. They are not Zoe, nor can I expect them to be. I have some of her clothes in Ziploc bags to hold her scent...but the scent isn't truly hers. The scent is medicinal and hospital-like...it isn't her fresh out of the bath sweet baby smell. I remember holding her for the very last time once she'd passed, I stoked her hair, traced the curve of her nose, the roundness of her cheeks. I looked at every finger and toe, all trying to burn not only the image but the sensation of what it felt like to touch her into my brain, into my everlasting memory. But I can't remember. The only thing that does feel like her is the single lock of hair I have of hers...I can get this sensation of her hair between my fingers and I try to transmit that to what it felt like to run my fingers through her thick curls. Everything seems just out of reach.

This journey of grief if unbearable at times and nighttime is the hardest. I'll sit in the rocker, giving Lily or Avery their last bottle as they drift off to sleep and the still, quiet of the night overtakes me and I just crumble. This pain is so big, so all encompasing and yet we still have to get out of bed every morning to start the day anew with Avery and Lily. They get us through the days, but the nights...the nights are the worst. I pray so hard to God and to Zoe, I beg her to come visit me in my dreams...I have yet to have a dream of her where I can be with her again. Instead my dreams are filled with fragmented strange dreams that have nothing to do with her.

And of course I have a new kind of guilt. Like the fact that every achievement Avery and Lily make is coupled with sadness that Zoe isn't here to share in it. Is that fair to Avery and Lily that at this moment I am not fully enjoying their milestones? Don't get me wrong, they do bring smiles to my face and giggles to my belly all day long...but the thought of Zoe is always right there. I know I said in my last post to live your best Zoe life and I am going to practice what I preach...but right now, right this instant, I am so sad and so empty.

31 comments:

Casey's trio said...

My heart aches for you. I will pray that God gives you strength. You have shown so much strength already and the honesty in this post is so admirable.

Unknown said...

Oh, Keira. Stef and I were out to dinner last Thursday and we shared you - and Zoe - with our Triplet group. We laughed - and we cried - and we remembered Zoe.

Sweetie, I can't imagine - truly, I don't want to. My three boy are here and naughty - I don't want to entertain the thought that Lorne not be here with his brothers so, honestly, I just won't. I can't. I am not strong enough to imagine my life like that.

I am sorry you not only have to "imagine" - but to live - your life without one of your little girls. I pray for your family every night.

Take care,
Kara

Unknown said...

Oh, Keira. Stef and I were out to dinner last Thursday and we shared you - and Zoe - with our Triplet group. We laughed - and we cried - and we remembered Zoe.

Sweetie, I can't imagine - truly, I don't want to. My three boy are here and naughty - I don't want to entertain the thought that Lorne not be here with his brothers so, honestly, I just won't. I can't. I am not strong enough to imagine my life like that.

I am sorry you not only have to "imagine" - but to live - your life without one of your little girls. I pray for your family every night.

Take care,
Kara

Anonymous said...

Keira thank you for this update, it must have been hard to put it all in words. I feel such pain for you from reading this that I can't even get close to imagining the enormous pain you must be going through. I pray that you continue to have the strength you need for your girls and when you feel like you don't have any more somehow you will find courage to bounce back. You did not miss anything and you did not do anything to cause this tragedy. You took care of Zoe like no other could and she knew that you loved her. I pray that you will meet her in your dreams. Sending you lots of cyber hugs. I wish I could be there to lend you a shoulder and hug you for real. :0(

Andrea (mom of Andre and Anton) from apmultiples

Stefanie~ said...

i'm speechless... speechless.. My heart literally hurts for you. I didn't think I could make it through this post...

You ARE and always will be a Mom of Triplets.. Always. I think that as Mom's of triplets, We only know the "identity" that comes with it. We understand that we are an elite few.. I can only imagine right now that you feel like your identity is missing"..

Take comfort that Zoe has touched so many lives.

Zoe will come to you in your dreams in time.. When she knows that you are ready.

I can only hope that she comes to you in many other ways as well.

Warmly,
Stefanie

Unknown said...

Yes, you are a mother of triplets and always will be. My heart aches for you.

Judith and Jason said...

I came across your blog from another preemie site. I have been a lurker, but am compelled to write to you. Last year on 3-11-07, I gave birth to trip girls. We lost 1 at one month then the second after 3 months in NICU. Our Nina came home after 102 days, she turns 1 tomorrow. When I found your site, I always cheered your family on b/c I was like GReAT ! 25 weeker trip girls and they are doing good. I cheered on Zoe when she came home and cried when she passed away. I am saddened by your loss. I am sure you heard this before, but Zoe will live on in her sisters.

nancy said...

Oh Keira,

I wish there were words that could help. Please know you and Richard are in our thoughts and prayers. Zoe will come visit you in your dreams.

Love,

Nancy

Tabatha said...

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.
Trust in the Lord forever,
for the Lord, the Lord, is the Rock eternal.
Isaish 26:3-4
I pray for you every night!!!

MaryBeth said...

Your honesty and ability to put words to your feelings at this point is staggering. As difficult as it was to read through this post, I can't imagine how infinitely more difficult it is to live it out every day. You will always be a triplet mommy. You are still SuperWoman. You are constantly in my prayers!

Tripletblessed said...

I can't even begin to imagine how painful everything is right now for you. Thank you so much for sharing though it serves as a reminder to hug our babies and to not take the day for granted.

Anonymous said...

Keira-
I read this and I'm just at a loss for words. I so want to be able to give you words of comfort and make everything better.... that's my job, I help babies, I make people better. And I hate that there's nothing I can say or do to make this better. You have been in my constant prayers. I have cried for you, and I've cried for Zoe. I cry when I think of her but I smile and laugh too when I remember that beautiful smile, and how she was always dressed to the nines for her walks around the unit! :) I am begging God to let Zoe visit you in your dreams. Just as someone else said, I believe she will, when you're both ready. Yes, you will always be a triplet mom. Your honesty in this blog is breathtaking. I think it is wonderful that you can write your emotions down like this, regardless of what some might think. I will continue to pray for all of you every moment.

Lots of Love and Hugs,
Taryn

Anonymous said...

No words, just prayers and lots of tears...

Kimberly and the GA Guinn Triplets
www.guinnfamilyhome.com

Precious Blessings said...

The tears are flowing... and oh how I wish that I too could say the right words. Though we have not met, just from your blog I feel like I know you from all you have shared.

I will continue to Pray Gods peace, healing and comfort for your whole family.

Jennifer Johnson

Precious Blessings said...

The tears are flowing... and oh how I wish that I too could say the right words. Though we have not met, just from your blog I feel like I know you from all you have shared.

I will continue to Pray Gods peace, healing and comfort for your whole family.

Jennifer Johnson

Precious Blessings said...

The tears are flowing... and oh how I wish that I too could say the right words. Though we have not met, just from your blog I feel like I know you from all you have shared.

I will continue to Pray Gods peace, healing and comfort for your whole family.

Jennifer Johnson

Calonder Crew said...

Kiera,

I do not have words to say anything wonderful. I just want you to know that you remain in my prayers and you are thought of often. You will ALWAYS be a mother of triplets.

Trista

nancy said...

Keira,

I usually check e-mail and blogs in the mornings and thus have no sound on so I don't wake anyone. I checked in tonight to see how you all were doing and was treated to the loveliest soundtrack. What a beautiful musical tribute.

Thinking of you.

Love,

Nancy

Denise said...

Oh Kiera! I can't imagine the hell you are living. You will always be a mommy of triplets. I wish I could say something that could help ease your pain. Unfortunately the best I can offer is that you are constantly in my prayers and I think of you all the time.

Anonymous said...

Your words are those of a true "mommy". We are always thinking what we "chould have" or "should have" done...never knowing that Mommies instinctivly always do the "right" things by our babies. Zoe was so blessd to have you as a Mommy, because you gave her life, and love....Those are the most important things we Mommies give. As a Mom of twins, I know the struggles of multiple births, the NICU days, the fears, and the joys. Although your pain is umimaginable to me, as a Mommy, I can understand how strong the love of a parent is. Zoe will always have that..and she will visit you when you least expect it. I don't know you or your family, but have come to feel the need to comfort you after reading your blog. I hope as the days pass you will be comforted by her memory, and believe that you did wonderful things for that beautiful little angel. Your family is in my prayers and thougts.

Darcy @ m3b said...

Thinking of you and holding your family in my thoughts.

Amanda L said...

I am so sorry no one should have to go through this. I pray for you daily.

Anonymous said...

My heart breaks for you. Praying for you...

Mindy Pierce

Christie said...

Kiera,
I'm amazed that you are able to put your feelings into beautiful words right now. You are most definitely SuperWoman/Mom/Wife. Your tributes to Zoe are truly moving. My heart aches reading your words. I can't imagine what you are going through. You will ALWAYS, ALWAYS be a mom of triplets. Never doubt that. You and your family are in my prayers.

Colleen and Billy said...

"Mom of Triplets" (always)....
I think and pray for you often!
I was pregnant with triplets and lost one early on, I now have two healthy and happy 'twins'. But I was first and foremost a mom-to-be of triplets and that is how I knew 'them' and my pregnancy. I will never forget that feeling. I admire you!

Anonymous said...

Discovered your blog from Triple Take..... I am so sorry to hear of all your pain. My heart breaks for you. I will say some extra prayers for you today. God Bless

Shannon

Anonymous said...

You are constantly in my prayers! I pray that your angel will meet you in your dreams! I am so sorry for your loss.
Cindy Richards
Lily Richards-mom, fellow NICU roomate to Zoe at Northside

abby said...

Words cannot describe the pain that I feel for you, or the empathy. I hadn't been to the site in a few weeks, and was shocked when I logged on tonight. I know that nothing I can say will make anything any better or different...I have been, and am, where you are right now and I know something of what you are going through. No parent should ever have to see their child die, no parent should ever have to be forced to make the decisions that we have had to make. My heart is with you in this time of need and my hopes and prayers are for you to find solace in whatever ways you can.

Abby, co-mom to 23 weekers Hallie Rose and her angel sister, Olivia Skye, whom we lost at 18 days 21 months ago.

Anonymous said...

You don't know me, but I've come across your blog through our mutual friends' blogs. I cannot believe the grief that has come into your family. But I just wanted to tell you that I had a dream about Zoe last night. I do not really know how or why I did seeing as though I never knew her. But Zoe was walking, talking, free of tubes, and eating a plate full of cake. She was happy and clapping and singing. I don't know if this helps you at all, I couldn't even figure out if I should tell you or not, but I felt like somehow she was telling me to tell you that she is happy and that she is ok. I hope this helps. -- Leslie

Kelly said...

Oh Keira. Your bravery astounds me every time I read your blog. You are a triplet mama. You are a super mama. You are an inspiration. My prayers remain with you.

Anonymous said...

To the Sorrells family,
I never personally cared for Miss Zoe, but enjoyed her little visits in the stroller. Always dressed to impress with a beautiful smile! She touched people all over the world. You are in my thoughts and prayers....
A Nurse in the NICU

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31