Tuesday, February 22, 2011

ICLW

I haven't done ICLW in a long time. You join a list of blogs and then for a week you all go around reading and commenting on the other list members blogs. It always turns out to be more work than I anticipate, but it's good. I always appreciate it when people on the list do a quick ICLW Intro post, and we are one one day in, so here's mine.
Married September 2002
Pregnant (on pill) October 2004
Charlotte diagnosed via triple screen, amnio, with partial trisomy 16, partial monosomy 9 in Early 2005, due to paternal balanced translocation. Chose to carry to term, expecting stillbirth.
Charlotte born June 2005 full term via c-section, 6 lbs 5 oz. Came home at 3 days to pass away at home.Lived.
Wound up pregnant again February 2008. (on pill). CVS fails, chose not to retest. Born healthy October 2008.
Charlotte, after living a happy, difficult, joyful life, passes away February 21 2009from complications from RSV.
Decide to pursue IVF with PGD. Unimpressed with local clinic #1, after some testing showing I'm ultra fertile and Zar has a pretty darn good percentage of healthy sperm, we change clinics, and decide to start IVF in February 2010.
Approached at work by a friend who knows someone looking for adoptive family. Meet birth mom January 2010. IVF canceled.
Find out I'm pregnant again on March 5th 2010. Pretty sure mother intuition tells me baby is not healthy. Confirmed via CVS April 2010. Same diagnosis as Charlotte.
Ava is born May 5 2010. I'm with birthmom in OR, delivered by my OB. Very special.
Lily is born October 17 2010 via c-section. I am told not to get pregnant again due to nearly ruptured uterus (FINE BY ME!). Lily spends a month in NICU, gets feeding tube.
Lily comes home. Adoption finalized December 2010. Lily starts having seizures.
Lily passes away at home in daddy's arms February 6 2011, after a short, hard, but meaningful life.
Now we work on the next phase, grieving, remembering. I figure if we are meant to have more I will feel it in the next few years or someone will approach us again--miracle of miracles. For now we are a family of four on earth, two in heaven, working on finding our new, new, new, new, new normal...again...

Sunday was the 2 week anniversary of Lily's death. Monday was the 2 year anniversary of Charlotte's. So did I go for a walk, release balloons, pray, look at pictures, cry, laugh, remember, leave flowers? Nope. I managed to make myself so busy I hardly had to think about it. Sigh.
Last year on Charlotte's angel day we went to her grave with friends and family and did a balloon release and wrote memories of her and went to eat. This year I managed to wrangle a friend's shift from her at work so I could get the holiday pay. We did spend time with family but I've been sick and spent most of the time wrapped in a blanket on the couch. I feel bad, guilty even, but it is just too much right now. Too much too close together. I don't want to go see the fresh grave in the snow. I don't want to think about Lily's headstone, or work on feeling or healing, or talk much about any of it.
I just need to regroup for a minute. I'm feeling disconnected and feverish and tired. Right now I'm going to go take a shower and dry my hair instead of passing out on the bed to wake to a matted mess an hour later. I'm going to go to the grocery store for the first time in a couple months and make some meal plans. I'm going to take down Lily's baby play gym. Or maybe I'll just leave that up awhile longer.

Friday, February 18, 2011

Feeling is Healing...



Ella's Famous "Pose" and Lily's paper Lilies

Friday begins my work week. I work Friday, Saturday, and starting this week, Monday. Sunday doesn't really count as a day off as it's soooo much work to get the kids to church and stay for the entire block. But we try.
Today I was feeling good and productive. I was sailing around on my Sketchers Shape up shoes, pounding out paperwork and sipping zip fizz every four minutes. And then suddenly, I thought of Lily laying in her daddy's arms less than two weeks ago. I thought of the hour it took her to stop seizing and breathing and my heart just constricted. Yes, I have peace, but those memories are going to be my "hard moments." With Charlotte it was the night before she passed, sitting in the corner of the hospital room with my husband, sobbing while the doctors worked to get an arterial line in my little girl, seeing her tiny pale hand against the blue sheet, the bright light, the blood. That is the moment that haunted me. I went to counseling a few times after Charlotte died, and talked about those moments. The therapist said "But don't you think Charlotte is watching you struggle with this and just saying 'Oh mom, I'm fine!" And that did it. That moment doesn't haunt me anymore. But Lily's still does. (Granted, it's been just a few days.) I have tried to imagine Lily saying the same words, but it just doesn't ring true. She was just a baby. She didn't say words. Charlotte *almost* did. And she laughed and smiled and had so much joy. Lily didn't. That is hard for me. I feel like I need to hold Lily. And obviously, I can't.
Perhaps I should consider going to a few sessions again, work through it out loud. So far I have done everything, and I do mean everything--to avoid this grief. To keep occupied with other things, my other kids, work, myself. This blog is very cathartic, but maybe I'm going to need a little more help.
I was able to stay at work today. I didn't even cry. I just stood by the drinking fountain clutching my chest for a moment until a coworker walked by, and then I smiled and sailed on my back to the desk. And I was relieved I was able to move forward with my day. And yet I know I need to feel what I need to feel or it's going to continue to attack me at inopportune times. With Charlotte I could replace those hard memories with happy ones, but with Lily, there are relatively few happy memories. She struggled. She seized.She lay in a hospital crib. She cried and slept. Once, maybe, she smiled. And that's hard. I wish I could see her now, happy, and focus on that. Just for a moment, I wish I could see her whole. A dream, a vision, something. Sometimes it feels a bit too dark to walk by faith.

Thursday, February 17, 2011

A Gift of Time


A Gift of Time: Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief
By Amy Kuebelbeck and Deborah L David PH.D
I've been meaning to share about this for a few weeks. While I was pregnant with Charlotte I was on the lookout for any books or resources to help me though carrying to term while knowing my baby would not be long for this world. The best resources I found were www.benotafraid.net and the book "Waiting with Gabriel", about a baby with only half a heart and his mother choosing to carry to term.
This book, A Gift of Time, came out a few weeks ago. I immediately bought it on my kindle, because I had been receiving email updates on its publishing for years. I had sent in an email when Charlotte was a baby about my experience carrying to term. This book is wonderful. It is informative, it is real, it is comforting, it is practical, and it is very sad. I wish I would have had this book while I was pregnant with Charlotte, and with Lily. Over 100 parents are interviewed and quoted throughout, and I am one of them. It makes me happy to see Charlotte's name there in print (even in e-ink) and hope her story will help moms and dads going through this. Out of my entire experience with Charlotte and Lily, I can honestly say the hardest time was while I was pregnant with Charlotte. The terrible unknown, feeling so alone, afraid of the birth, afraid of what she would look like, if I would even love her, etc. This book addresses all of that, and what comes after. In fact I read the last few chapters the night before Lily passed away. Even though I'm a nurse and I had been through this before, it was still helpful to read about the dying process, about the decisions that need to be made after death, about relinquishing Lily's body, which is another very difficult moment. Luckily that moment was made much easier by a very caring and respectful mortuary worker. Not everyone has that experience.
This book certainly isn't book club fare or casual reading, but if you happen to hear of a mother who has chosen to carry to term despite a bad prenatal diagnosis, I hope you will direct them to this book or buy them a copy. It covers EVERYTHING you go through. It also covers the first big decision, which is whether to carry to term or terminate the pregnancy, and obviously it is geared towards parents who choose to carry to term. This may not be the right choice for every family, but it was the right choice for us, (both times) and this book would have been so helpful to have. I'm so glad it's available and that I was a part of it!
I have been told I should consider writing a book about Charlotte and Lily, and I have even sat down a few times and tried to start, and never really got anywhere. If I never get around to that, at least I was a part of this.



The Girls were Somewhat Excited to get Valentine Cupcakes

Just checking in today. Not feeling the drive to write. Locals--watch the Trib for my letter to the Editor about our stolen flowers from the cemetery. Should be printed sometime in the next few days.
I have about a zillion thank yous to write, and my goal is to actaully send them out and not just have the stamped and sealed envelopes on my counter for the next six months. Wish me luck!

Sunday, February 13, 2011

One Week

One week ago Lily died.
It's been a long, floaty, numb week. I don't remember Monday, Tuesday or Wednesday--just snippets. Sitting in the mortuary, walking towards the Cemetery office. I was surprised to see the charge for the adjoining plot (My spot, now that Lily took my OLD spot) on my credit card statement--Zar claims I was there when it was run. A few sad sweet moments dressing Lily in white. Then I remember standing in a steamy hallway with two friends at the spa...but the rest of those three days is lost to me. I remember Thursday. Which is a gift. Thursday was special and edifying. People shake their heads and wonder aloud how you cope with your child's viewing--talking to people, speaking to a crowd. I can say I wondered the same thing before Charlotte passed away, but now I know it's a combination of the Lord's tender mercies and your body's reaction to taking an emotional hit. Part of you shuts down. Your brain focuses on what needs to be done and then forgets. I think on a subconscious level you start to deal with grief and exhaustion and memories, but you don't become aware for a few days. And you sleep a lot.
When you become aware is when you start to feel it. You hope you can fall asleep as soon as your head hits the pillow because that's when memories come, and it's painful. Songs just knock you over. Your flowers start dying. And then you go up to the cemetery and find someone has pulled all the roses and lilies from the casket spray left on her grave, and probably given them as a Valentines gift. And left the torn apart left over greenery laying in the dirt. On what is clearly a fresh and tiny grave. And it's ROUGH.
But there are such sweet moments. Your husband's coworker who invites you to Sunday breakfast turns out to be married to a friend from school you haven't seen in years. Your friends send texts and call just when you need them. People write outrageously nice things about you on their blog. Your daughters just want to be held. Another bouquet arrives.

I'm nowhere near perfect. If I'm strong it's because of the last 5 years. If I'm handling it well it's because I believe in heaven, and because I'm somewhat numb. And it was very hard watching Lily hurt. And I have A LOT of help and support.
But you should know I certainly don't feel "Amazing". You should know I tend to let my family live from a pile of semi-clean clothes on the laundry room floor. I go to my cushy job twice a week and get to decompress and talk to adults about not-kids. When I go to my moms I don't lift a finger to care for my kids. I let her change them, feed them, clean up the sprinkles they dump on the floor, and I sit on the couch. When my mother-in-law picks up my kids for the day, I always say "okay, I will be there at 1 after I put away the semi-clean laundry!" and then I don't come until 6. Every...single...time. If I go to yoga at 6 am it's because a major component of this particular class is laying on the floor. If there is something full of carbs and sugar in the area, I will seek it out and consume it. My kids watch A LOT of Mickey Mouse and Elmo. I have been known to spend money I do not have. Zar told me the other day I have been snoring. I let Ella have way too many fruit snacks, chocolate chips, and sips (chugs) of diet coke. Occasionally Ava wears last night's jammies all day...and then that night too. I make snarky remarks to my husband. A lot. My car is a dumpster on wheels 99% of the time, until Zar cleans it out. I don't take care of my possessions, namely cell phones, cameras, and other small electronics. I'm often cranky. Most of my home cooked meals are a variation on chicken, sour cream, and cream of chicken soup. And I haven't cooked for my family in weeks, thanks to all the wonderful REAL meals people have sent. And finally, a few weeks after Lily was born, there was this bad smell in the refrigerator, and I kept throwing stuff out but it just wouldn't go away, and then one day I noticed a puddle of milk on the floor. I opened the frig and a GLASS BOTTLE OF MILK had EXPLODED on the top shelf, soaking the entire inside with curdled, disgusting, smelly old milk. How long had that bottle been in the back of the frig? That had to be A LONG, LONG TIME. And you will notice I did not immediately blog about that. I find I put my best food forward when I blog. So I will tell you now that right away I canceled my plans to go buy something needless and took everything out of that frig, and sanitized and wiped and scrubbed the inside, and checked the dates on everything else and of course, plugged in the Scensty. And told Zar I had FOUND the SMELL, HOORAH! Impressive, right? Not really. Because sometimes circumstances force us to be strong, or brave or have great faith, or to clean out the frig. But you do what you gotta do. Am I right?
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Friday, February 11, 2011

Afterwards

Lily's last night
Our day was beautiful. Despite the circumstances it is so gratifying and healing to have so many people take time to come see us and Lily and say goodbye. I was proud of Lily. That's still my baby there. She matters so much to me but how wonderful to know she mattered to others too.
We loved the atmosphere of Lily's viewing. We chose to have it at Larkin funeral home downtown and they had the most wonderful little setting for us. Instead of one big long room we were in a beautiful little collection of homey rooms with couches and tables and stained glass windows and dark wood and of course flowers and pictures and soft light. Lily was in her dear tiny white casket in front of the fireplace. She wore her beautiful white lace dress made by grandma, (that matches the dresses the girls wore in my header--Lily's dress wasn't ready for the pictures but thank goodness I felt prompted not to put it off.)
The day before we went to the craft store and Ella picked out stickers to make a card for Lily--Mickey, frogs, elephants, flowers. The card along with her mouse, a soft blue blanket she used every day, her special necklace and a pink handkerchief made by Aunt Stephanie was with her.
My Lilies for Lily craft was successful! It turned out so cute that even Zar admitted he was glad I put it together. We loved seeing so many friends and relatives (I got lots of compliments on my facial) and it was comforting to know so many people who never met Lily still felt close to her through my blog.
Closing the casket was the worst moment in an otherwise special and quietly joyful day. Just that feeling of finality. Folding her blanket around her, touching her cold little hand for the last time. It was tempered somehow by seeing her dad carry her little casket by himself to the car. It just seemed sweet to this mother's heart.
Zar and I said a few words at the graveside. So strange to be at that same spot again. The day was so similar--bright and warm for February. Balloons all around. Pink flowers. The same white teddy bear was waiting for me on a chair.
This is what I said--or what I tried to say:
Throughout Lily' short life I found myself so often looking over her sweet little body, and thinking how dear she was. She had especially dear little feet. They were perfect. At times I thought to myself that her feet were foretelling of what she would do in this life--crawl, maybe even walk. They were just so suited to life on earth.
As it became clear the last few days that Lily wasn't going to stay, I remember holding her feet in my hands and thinking "What a waste." It seemed so wasteful that she would have been given such wonderful feet that she would never use. And then this morning as I was getting ready the thought came to me that it wasn't a waste. She would use those feet. She would walk and run and dance. The parts of her body that were not perfect would be made perfect, and her feet were a foreshadowing of what her body would one day be able to do. Just not in this lifetime.
When we chose Lily's name it was to remind us that Lily was in God's hands and He would care for her, just as He clothes the lilies of the field. Again, this morning I was enjoying all the beautiful flowers--especially the Lilies we have received, and I thought that Heavenly Father doesn't let the lilies stay long on earth, but that doesn't make them any less special. In fact in some ways it makes them more special. He lets them bloom on earth for a short time and their beauty is not wasted. Lily's life was not wasted. Lily was worth it.
I will miss you Lily, and I am so glad you came to our family. I am so glad you are with your sister, and that we have Ella and Ava. None of us are left alone. For now your dad and I will stay here with your sisters, but there will come a day when most likely we will be with you and your sister, and Ella and Ava will be here on earth together without us. But someday we will all be together again. It will come full circle. It will all be all right in the end.

Wednesday, February 09, 2011

So much to say! I will have to wait for later.
Tonight we are going to go get some good food and then I have my traditional (yes, I'm calling it a tradition) pre-funeral facial at my favorite spa. It did wonders for de-puffing last time (wow...last time.)
Thank you so much to everyone who commented on my blog, on the online obituary, on facebook, who called, sent flowers or a card, brought food or who simply thought about us over the last few days. We feel your love and support and the protective soft bubble it provides. And thank you to whoever called the mortuary and corrected my spelling just moments after the obituary was posted, and before it went to press!
I'm looking forward to tomorrow. I'm setting up a silly little "Lilies for Lily" craft for the viewing; Zar has made it clear he thinks it's a bit dumb but the thought has been nagging me for days and I'm going to do it. So if you are coming to the viewing, be prepared to do some cutting and taping. Last time (there it is again) Charlotte's funeral was a wonderful, spiritual, special day and I'm hoping for the same for Lily Pie. Although we aren't doing the huge funeral for Lily--a smaller affair seemed appropriate for such a small one,however, please anyone who wants to come, please come see us. Feeling your love and seeing how Lily impacted you is what will get us through the next few chilly months.
Much, much more, later.
Until tomorrow.

Tuesday, February 08, 2011

Obituary




Click here for Lily's obituary, to appear in tomorrow's local papers.




Lily will have a viewing at Larkin Mortuary at 260 East South Temple at 12:30 on Thursday. There will be a graveside service to follow.




Thank you to everyone for their kind words, thoughts, prayers and comments. My phone has been out of commission (again, I know, I know) but it is back on today. We are enjoying time with family and getting lots of rest. Lily is ever close to our thoughts. We miss her little cry! Our home is so quiet at night without her humming oxygen concentrator, her clicking feeding pump, her beeping pulse oximeter, her little growling complaints. Cute sweet baby girl. We miss you.

Sunday, February 06, 2011

I'm Grateful...

Lily slept in our bed last night, and the night before. Yesterday I went to work only to find someone had come in for me so I went home and held Lily and bathed her and napped with her all day. Last night I took Ella into bed with Lily and I and we read books for an hour before Ella's bedtime. That today turned into a bright sunny February day, very much like the one two years ago when Charlotte left. That I had pictures taken of the girls just last week. We had a beautiful family portrait done at Christmas. That Lily's last night on earth was quiet and restful, and we were all together at the end. That at the end her daddy was holding her, just like he did for Charlotte. For hospice care. For social networking so I didn't have to make calls all day long and just spent time with family. And went for a walk. For Ava and Ella and the smiles they gave us today. For my brave sweet tender hearted husband. For our neighborhood and ward. For the respectful and kind man from Larkin Mortuary who carried Lily gently away wrapped in a soft blue blanket with her toy mouse. For dear friends willing to run errands, make calls, send food, give hugs, and say prayers. For my mommy and dad and sisters and brothers and in-laws and the rest of my wonderful family. That I don't have to pump anymore. That Lily let us know she was ready and then went within days. That she woke up a couple times in the last two days and was alert and bright eyed. That we were able to keep her comfortable. That in the last moments with Lily I was thinking of Charlotte, and my grandparents, and Zar's grandparents, and everyone else who I know were anxiously waiting for Lily to come Home, and that I was jealous. Jealous that while we were left aching and crying and holding each other for warmth and comfort on another cold February day, Lily was laughing and hugging and having the time of her eternal life. And that I know when my time comes it will be that much sweeter for having two daughters there to reach for each of my hands.

Lily Elizabeth Hayes




Consider the Lilies of the field


How they grow, how they grow


Consider the birds in the sky


how they fly, how they fly!


He clothes the Lilies of the field


He feeds the birds in the sky


and He will feed those who trust Him


and guide them with His eye.




Consider the sweet tender children


who must suffer on this earth


the pains of all of them He carried


from the day of His birth


He clothes the Lilies of the field


He feeds the lambs in His fold


and He will heal those who trust him


and make their hearts as gold.




Lily went this morning to be with her Heavenly Father, Jesus, and proud big sister Charlotte.


Friday, February 04, 2011

Lines from this poem have been running in my head the last two days:

God Speaks

Death is ugly?
Oh, my children,
No.

If you knew
The beauty
That begins where
Your sight fails
You would run
Run, run
And leap
With open arms
Into eternity.

But sad
Is a harvest
of green wheat.

And
So you would
Feverishly
Cling to earth
And finish
Your mortal task
I merely gave
Death
An ugly mask.

-Carol Lynn Pearson

We've bid goodbye to Lily, oh...maybe a dozen times over the past couple of days.
She has leaped to the seeming edge and then inched her way back more times than I care to remember.
I could be wrong--I was sure the end had arrived yesterday--but it can't go on like this for very long....
...right?
The important thing is we have been able to keep her comfortable with the help of hospice and for the most part it is calm and peaceful here. It feels right to have taken the mad dash to the ER and intubation option off the table. It feels good to be home.
Under these circumstances, death doesn't seem to wear such an ugly mask.

Wednesday, February 02, 2011

I'm Here to Keep my Eye on Her...

Sisters...
Sisters....

Never were there such devoted sisters....



Tuesday, February 01, 2011


Discoveries of Late:

1. Hospice is awesome. It's nothing to be afraid of. Today a volunteer brought over Lily's sodium and potassium so I didn't have to go out in the beautifully deceptive freezing sunny weather with a bunch of babies.

2. Jammie days also are nothing to be afraid of.

3. When people offer help, don't be embarrassed. Say thank you. People want to help.

4. Pandora. What? Where has this been all my life? Set up a "Killers" Station, a "Church" station, a "Beatles" station, and have done nothing but listen to my "High Sierra" station all...day...long for days...on...end--Dolly Parton, Emmy Lou Harris, Nanci Griffiths, country music of my late high school days, I'm in heaven.

5. Having flowers in the house just makes for happier days.

6. It's okay to eat real food. Sometimes when I'm trying to "eat well" that means I feel like I can't have lunch. So I eat small amounts of junk all day (and a spinach smoothie) and realize at the end of the day I have eaten no actual food. ('cept spinach.) The past few days I've been making myself a turkey and cheese and apple slices and stolen bacon from Zar's stash sandwich, and it's filling and delicious and then I don't eat as much junk. Weird.

7. I haven't figured out how to set up facebook on my new phone and it's made life somewhat better. Gave me time to discover Pandora.

8. Reading. This is thanks to my kindle. What did I do without it? Usually after the girls go to bed I go upstairs and read until I pass out and Zar watches TV until he does the same. Last night I made him come upstairs and I read aloud to him from the last book of "The Hunger Games" which I started reading to him on our trip to Vegas at the end of December. I only made it a partial chapter before I began to go (I fall asleep QUICK these days) so I dismissed him, but it was a sweet and tender 10 minutes. Zar is in love with Peeta.

9. I'm still addicted to and loving early morning Bikram yoga. Not every day, but a few times a week. For some reason it's much easier for me to get up at 5am to pump, get dressed and head off in the cold knowing I'm going to be doing hard yoga in a hot room for 90 minutes than it is for me to the do the same to head to a drafty gym and watch tv from a treadmill for 45 minutes. (or much less.) And I feel good. And in yoga you get to be barefoot.

10. Some days are going to be sweet and snuggly and I will listen to twangy music all day and hold my big two year old while she falls asleep for her nap, and bathe my little Lily in coconut oil and style her hair in a faux-hawk, and blow on Ava's tummy while she laughs like a loon until she cries. And the very next day I may bawl for hours because it's just so upsetting they weren't able to seat our whole family of 15 together at a restaurant on Saturday night, and oh yeah, my baby is on HOSPICE, right? But there are still flowers on the table. And turkey apple cheese bacon sandwiches. And faux hawks.