Calling all micro preemie parents

We need your help! The Zoe Rose Memorial Foundation is currently gathering information to include in our website. The Foundation's purpose will be to help/support/educate parents of micro-preemies (babies born at 32 weeks gestation and earlier). We will cover six major areas: prenatal (if diagnosed high risk), being in the NICU, transitioning home with your micro preemie, on-going care and support, fathers support, and bereavement support. We have ultimate plans beyond the website to be able to connect in person with families. I know when Zoe was still in the NICU, just having my Georgia PINES parent advisor come see me once a week was invaluable! But the thing is...parenting a micro-preemie(s) does not end when you leave the NICU...it really is just beginning and we parents still need all sorts of support and information for a long time to come. Because of all of the incredible and ongoing work and research the March of Dimes has done, micro preemies have better survival rates. Therefore we see this need to serve, support, and educate these micro preemie parents who have to parent in a very different fashion that those with term babies.

I've created a survey for any willing participants to fill out to help us hone in on the areas where these parents most need additional help and information. We had a very specific experience with our girls, and looking back we know what we wish we had known before the girls were born, we know now what would have been and what was helpful during their time in the NICU and getting them home, but every baby is different, every family is different, every hospital is different. In order for us to eventually reach the entire nation (and hopefully the world) and to be effective in our efforts we want to make sure that we address all of the issues that are most important to parents with micro preemies.

I've posted this survey among all of my multiples and bereavement groups and have already gotten responses! Thanks Ladies. So, if anyone else is interested in sharing their experience please email me and I'll send the survey to you. All information will be kept confidential and all questions are optional. We are so appreciative of everyone who has taken and will take the time to complete the survey. Once we are on the web we'll have a much more high tech way of doing this where you can just log on to the website and fill it out directly there...pretty cool things happening in our future!!!

Stop living in death...start living in this life

I'm not quite sure how to start this one tonight. From my last post you can all see that my grief is still runs very deep and I don't expect that to change much anytime soon...especially with what the next 3 months represent for us. However...I had a session with my counselor today that was long, hard, exhausting, but everything I needed to hear. I am so happy to have found Jeanine, she's a Christian counselor who was a NICU nurse. She worked with the terminal babies and later felt a calling to grief counseling and went to seminary for her education and training. She is incredible. Her faith is ever present and yet not overbearing in a way that intimidates me or makes me feel like I'm not a "good enough Christian"...her understanding of my grief is unlike anyone else I've spoken to on a professional level thus far...and she has this way of speaking to me with such compassion, even if it's something I don't necessarily want to hear.

I've been in and out of counseling for a long time...as a teen, a young adult, early in our marriage, and now; so I've learned that I tend to get a little upset if my counselor challenges me too much, or I may get offended or defensive if they aren't just letting me spill my guts and be the "victim" but are also holding me accountable for the decisions and choices I make. It was brought to my attention by someone very close to me that my posts may sometimes make light of the actual depths of my depression. I may write...life with micro-preemies is exhausting and chaotic...but what I fail to truly tell you is that last year I was hanging on by a thread, I was extraordinarily sleep deprived, still dealing with enormous guilt about my apparent shortcomings in relation to my early delivery, and was completely overwhelmed despite all the help I had. Richard and I had a very rough go of it for a long time...life was definitely not rosy all the time.

You see, I've been depressed for a long time...a very long time. Depression is an illness, it is not something you just muscle through or you brush off. My personality tends on the extreme...odd because a lot of people tell me I have such a calm nature...and I think for the most part I do...but when I'm down I get really, really, really down. So low that it scares some that are quite close to me. I don't think I was ever treated from a medical standpoint properly for my depression and I am certain that in some ways I hid, or tried to hide the extent of my depression from the very people that could help me. When Zoe first died I was in shock for a couple of weeks...and then the reality of her death began to set in and my already existing depression was compounded by the grief and I went low. I went very low, I went to very dark places, places that scared my husband. I couldn't hide my depression, I didn't want to, I didn't care. I'd do the absolute minimum possible that I could get away with in terms of caring for Avery, Lily, Richard, our home, and myself. I demanded a great deal from Richard, I expected him to continue to shoulder the majority of basically everything and to continue to carry us without much if any support from me; knowing full well that Zoe was his daughter too and he was hurting as much as I was. At the time the girls were still very much infants...not walking yet, still taking bottles, not nearly the independent little girls you see walking around our house today! Anyway, I guess my point in sharing this with you is that I don't want anyone to have an idealized picture of me, that I can take on anything and persevere. I am human and I was not well and I still have a lot of work to do to heal.

Well, thank you Zoe...because of all we've gone through lately I have sought out, with the support of my incredible husband, the best care. I now feel that I am under proper medical observation and have found Jeanine to help me with the grief counseling and my spiritual path. Which brings me to today....my session today was very powerful, so exhausting I wanted to just go to bed afterwards, but like I said earlier it was exactly what I needed.

I started by sharing with Jeanine that I've been having a really hard time lately, understandable she said with the holidays, girls' birthday, the year anniversary all in the next three months. She asked me how I was dealing with it and I wasn't sure how to answer because I can't really say that I'm actively dealing with, it's more that I'm just trying to survive from one day to the next. I also explained to her that this was the time that Zoe was home with us. She asked me to share any memories I had of that time and it was a good exercise for me to share these tiny moments and to remember them myself...like how Avery and Lily would crawl over and sit right on top of Zoe while she was playing with something and in quiet retaliation Zoe would steal their paci. Zoe loved being with her sisters and would watch them intently, she looked so cute at night, all bathed and smelling good, tucked into her co-sleeper, breathing treatments done, feeding pump going, and she'd hold her paci with both hands and kind of rock side to side, as if she was rocking herself to sleep. I'd lay on my bed and get my face close to hers so our cheeks would touch and I'd sing to her, it was our private alone moment, just me and Zoe, and it happened like that almost every night. I was able to recount these few precious moments with Jeanine and feel good about it. I then shared with her that a couple of people recently had asked me if I felt that my grief over Zoe was interfering with my ability to mother Avery and Lily and to be a wife to Richard. I told her I was offended when people said this and felt that I was still doing a good job of mothering Avery and Lily...but that it was hard.

Like I've shared in the past, each good moment with Avery and Lily has a sad moment on it's heels wishing Zoe was there too, or replaying the experience in my mind as if Zoe were there, oxygen and all. Jeanine said "Keira, you're torturing yourself by doing that. You are keeping yourself firmly planted in pain." She then went on to say "I'm not saying that you can't miss Zoe, or be sad, or keep grieving her loss...but we need to find a way to allow you to grieve in a healthier way. We have to stop the 'rotisserie thinking'. Negative thoughts beget negative thoughts and build and build."

I then told her that I often feel like I'm too separate people...the one that's here with these never ending thoughts and yearnings and sadness and then the other that knows that Zoe is in a better place, that she is with the Lord, that she is free of all attachments, that she is experiencing a love that I can not begin to comprehend, that she's just fine, better than fine and that I will see her again. Jeanine then commented that she felt that I had the notion in my head that if I don't feel intense pain, if I don't grieve her death every single day in a very deep way that I am somehow allowing this to measure the depth of my love for her. That I don't love her enough if I don't cry every day. She said "Keira, you love Zoe deeply and completely and you have to let that be enough. Let that be enough. You don't have to do anything else." So simple, so true, and also so difficult.

We then moved on to the guilt that I continue to carry with me. I told her that I pray about it, I ask the Lord to help me accept that the girls were born early, they all had rough starts to life, they had their obstacles, I couldn't be at home with Avery and Lily and in the hospital with Zoe all at the same time, etc., etc. I told her that I often think that I should have pumped my breastmilk for more than 8 months especially for Zoe that if I had done that she would have gotten more of my immunities and maybe she wouldn't have gotten the flu after all. I told her I know this isn't a rational thought, but it is a continuing thought in my mind because as a mother I feel that very basic instinct to protect and I do feel that I failed. Jeanine responded "Keira are you telling me that you are bigger than God? I believe that God knew from the instant Zoe was conceived how many days, hours, and minutes she would be on Earth and there is nothing you can ever do to change that. You have to stop digging in your heals and resisting the natural grief process. You have to grieve in a healthy way. I'm going to tell you something else that's even harder to hear...Zoe doesn't need you anymore, she is whole, she is with our God." With that I had a complete breakdown, and complete outpouring of sorrow. And when I could finally wipe my eyes and look at Jeanine I said "But I still need her."

Jeanine went on and said "Keira, you have to stop living in death. You have to live in the reality that is the life you have now. God took Zoe, not you and you have to live in this life for you, for your husband, and for Avery and Lily. You have to say that this life is enough, what you have is enough. Avery and Lily and your husband are enough."

She told me to pray to God that I would be willing to give Zoe up to Him that I would trust in His love and in His plan and know that it is good. I told her that I was afraid of forgetting Zoe, terrified of forgetting her in fact. She said "Keira, you'll never forget her. Might there be a day in the future that you don't think of her? Possibly, but she is never forgotten. What you can't do is to create memories for others to keep her alive. People may have special memories or experiences of her of their own that they will carry with them and others may be touched by her story but unaffected by it. You have to allow God to do that, allow God to plant and sustain her legacy. Believe that He will make sure that the people who need to remember her and need to be touched by her will be. You can't control that, you just have to be the vehicle by which He does this work. It is already so evident in the few things you've shared with me that this is already very much at work, and you have to trust in that."

Jeanine then reassured me again that she was not telling me not to miss Zoe or to grieve her loss, but to do it in a healthy way, in a way that brings God's light and love into our family and brings me back to this life here with Richard and our precious angels on Earth. She said she didn't expect me to be in this place in the next week, month or several months...but to work towards it, bit by tiny bit.

Whew....are you as exhausted reading this as I am in simply writing about it? I know God was pretty much "giving me a talking to" through Jeanine today and I say to Him now "I do hear You, I do." I came away feeling tired, but also feeling just a tiny bit lighter, a tiny bit less burdened.

Prematurity Awareness Day is TODAY

Zoe Rose a couple days after being born at 1lb 10oz

Notice her legs are about as big around as my fingers

She should have had 15 more weeks before being born

or 12 more to not be considered a preemie

Zoe at one month old...don't be fooled by her size, that isn't real weight gain

it is extreme fluid retension brought on by medication to close

a hole in her heart (very loose medical interpretation of the actual PDA) three rounds of the meds did not work and she had to have surgery a few days later


Zoe...supposedly "snowed" with fentanyl, ativan,

norcuron (a paralytic) and nebutol

Not exactly paralyzed was she?

Finally able to be held...she was two months old

Up until this point we had only been able to change her diaper

and change her clothes with a nurse's assistance

Lily Anne a few days after birth 1lb 6 oz

she should have spent 15 more weeks in my womb

that is an entire trimester

Notice the diameter of her arm in relation to my pinky finger

Lily being held for the first time at one month old

Look at how tiny her fingers are



Lily 13" long...grown a whole inch from her birth length!


Lily at 31 weeks gestational age
She still should be in my belly for another 9 weeks
that's TWO more months


Avery Ruth being held for the first time
one month old



Avery at 31 weeks gestational age
That dress she's wearing measures about 5" long
and it covered her knees



Avery, the tiniest of the bunch
1lb 4oz...that's the weight of a pack of hamburger meat!
She's holding Richard's finger so you can really get an idea of
just how small she was

Following was written by my good friend Kara so I've copied it and added just a couple of words of my own. You can go to the March of Dimes website to find out how your state grades in the 2008 Premature Birth report cards...Georgia got an "F" because our rate of premature birth is almost twice the National goal of 7.6% or less!

In Kara's words.....

Today is Prematurity Awareness Day!In the United States - 1 in 8 children are born prematurely. That is, before 37 completed weeks gestation. These babies are not just small and need to stay in the hospital until they are "big enough" to come home but they are sick, sick babies.

Premature birth is the leading cause of neonatal death. More than half of all premature births happen for unknown reasons... that means a mom could do everything right, have had a previous healthy birth (or two or three) and still have an unforeseen premature birth. Some babies spend months (like our girls) in the hospital away from their families. Some parents (like us) wait weeks to even HOLD their child for the first time.

Some children have problems that will follow them for their entire lives... brain bleeds that cause brain damage the children will never recover from... damage to growing eyes that cause permanent blindness.... respiratory problems which can lead to asthma or reactive airway disease...hearing loss...neurological problems like cerebal palsy. Not to mention the children who have heart and intestional surgery (like Zoe) in their first weeks of life.

Prematurity is a major economic crisis. No mother would trade her babies for all the money in the world, and I am no exception...But the fact remains that a "normal", healthy, full-term delivery usually costs around $3,000. The average cost of a preterm infant is over $40,000 (try $250,000 to $1,000,000 in the case of our girls) - not to mention the loss of productivity it costs companies when moms and dads have to take off of work to spend time with their sick baby in the hospital. These are just estimates of the costs through the first year - some of these children face medical conditions that follow them for years and that their parents (and their employers and health insurance) will be paying for for years to come... sometimes their entire lifetime.

Please help raise awareness today by signing the Petition for Preemies and telling someone about prematurity today.Together - we can make a difference! You can sign the Petition at the top of my sidebar and please pass this along to everyone you know!

I also just want to send a heartfelt THANK YOU out to all of my readers who post and email me such kind words of support. I can't tell you how much it means to me that you first, take the time to read what I write, and second take more time to encourage me, support me, and share your stories. I feel like you all are weaving this huge blanket of support for me and that is what keeps me writing and sharing my life with everyone. It helps to know that our story of infertility, extreme premature births and Zoe's life and death can inspire and encourage others to keep going, to love and cherish their children, and to know they are NOT ALONE in their grief when a child dies. You are not alone in your exhaustion when caring for multiples, special needs children or multiples with special needs, you are not alone in your self doubt and guilt when premature birth and infant death occurs, and you are not alone in your desire to be a better person, a better mother/parent, a better human in our world. Thank you to all of you.

Life right now

Here we are, a week from the 9 month mark and I'm a wreck. My crying hasn't just been limited to alone time in the car or after the girls are asleep. I can now cry quietly and just let my eyes tear up and possibly fall, but I can do it silently. Of course I also have the times where my body shakes and I cry so hard I have to gasp for air. The reality of Zoe's death hits me over and over and over, it just keeps knocking me down. Just when I think I've gotten up again, it just rolls right over me. I just can not comprehend that I will go on living for another 50 years without her. I can not imagine that life will just keep going on and on and on. And we'll just keep living it.

I've been reading back through my posts from this time last year, just wanting to compare then to now...life was certainly busy and a bit chaotic, but it ought to be with three preemie babies under one roof, right? The girls were having fun, Avery and Lily were mobile and Zoe was doing great! Back then we thought our obstacles were feeding, steroid and oxygen weans, hearing aids or cochlear implants? and OT/PT/ST. That is a lot to be sure, but manageable...now, everything is different. And it's not the kind of different we thought it was going to be. In a lot of ways life has continued on as it should and would have regardless of the fact that Zoe is no longer alive...namely Avery and Lily are continuing to develop into "normal" two year olds, independent, fiesty, on the go constantly, and VERY talkative. Here is a sampling of their current vocabulary:

Ciraya = Cindarella
Bay-ul = Belle said as if Scarlet O'Hara were saying the name
Me-ilk= Milk again as if Scarlet O'Hara were speaking
He-yo = Hello
He-ci-cokter = Helicopter
Want shome = I want some
Try, try = I want to try it
Lipple peoples = Fisher Price Little people
mada do eet, caw = Mama do it, crawl (as in pretend you're a cat and meow and crawl and chase me)
abc's = said anytime they see writing on just about anything
crackter = tractor (as in Gampa Jerry's crackter)
watch a moomee = watch the baby noah video
dincers = watch the african dancers on a Barney episode
happy to to = happy birthday to you
push button = push buttons on the computer or telephone
car, car = mommy or daddy went somewhere in their car
heben = heaven, when you ask them where Zoe is

And their current favorite things: Cindarella, Elmo, Curious George, camels, swinging, running outside, playing with Little People, reading books, singing songs like Old McDonald, but we change it to say Grampa Jerry had a farm...they also like to sing "where, oh where, has my little dog gone", "frere jaques", "my bonnie lies over the ocean...we change bonnie to all the names of everyone they know", saying goodnight to everyone they know, doing anything Richard and I do like wiping their trays, hands, and face, feeding abby, washing their bellies and their hair, drinking from a real cup, and picking out Mommy's clothes. Avery will pull a shirt off one of my hangers and say "cute" as she hands it to me.

But the fact remains that I don't have a list of Zoe's favorite things as an almost two year old. We're getting farther and farther away from the girls as 14 month old babies. I think this time of year is especially hard, not just because of the holidays that are all about family and happiness and being thankful...but because these are the months that we have memories of having her at home and of course their birthday is five days before Christmas. We have 4 months of memories of Zoe at home...four months, that's it! It's just not enough for me but there is nothing I can do about it. This is what life is right now and will always be. I will always, always wonder what she'd be doing as we go through life and milestones and "firsts". I remember having her IFSP meeting with our EI team in October last year and they asked me what my goals were for her a year from then...I hoped that at this time this year she'd be crawling and eating by mouth. I can only imagine what that would be like...a crawling baby on oxygen...I would probably be untangling oxygen tubing all day. I bet she'd even be pulling up to stand by now too, maybe taking a few steps around the sofa...always with a big smile across her face. I can see her looking at me and bouncing up and down to say "look what I can do." I still have trouble actually remembering the good memories so it's like I take the current development of Lily and Avery, adjust for Zoe's delays and create my own version or vision of what she'd be doing and how I'd be navigating life with all three of them.

I also envision what she's doing at any given moment in her current "life" in Heaven. For some reason I always picture her at 3 or 4 years old with long dark ringlets down her back. She is always laughing, always running, always playing. But I always see her from behind, I can't quite see her face and I am longing to see her face. I am still longing to feel the weight of her body against mine again and to feel that soft silky hair of hers. I love all the photos we have of her, and we have them all over the house...but they are so flat, so still. I watch her videos, especially where I can be seen, or at least my hand can be seen, stroking her hair or cheeks...so that maybe in some way I can recapture that sensation of my skin touching her skin. I pray, well no, I beg God to let me see her again...I plead with Him to let her visit me in some way that I'll remember, send me some kind of sign, any kind of sign that she's here with me, actually. Sometimes I think I've dreamt about her, but I don't remember it.

Last week the girls and I were sick so I was sleeping in their bed with them one restless night. I don't know if it was a combination of me having a dream and Lily having night terrors at the same time, but I had the oddest sensation of reaching out to grab something...but it wasn't an actual object, it was like an image of something or maybe someone...it was right next to Lily. She called out, I called out and reached for this thing but then it was gone...in a blink it was gone. Maybe I was still asleep, but I later felt that I had been dreaming about Zoe, but had been jarred out of my dream so suddenly I couldn't remember what I was dreaming. Or maybe I've just finally gone crazy...

Looking back at those posts from last year, it seems a lifetime ago and I seemed so happy...just chugging right along with our triplets, going to our appointments, working with our therapists...I even sounded like I was getting confident in my ability to care for them and balance my time with each of them. Their one year check up was really great, especially for Zoe...she was doing so well. If you get a chance to go back, check out that post in January of this year...it really is interesting to read about all the things she was doing and how well she was progressing. That is one of the things that will always be so baffling to me...she WAS doing so well. She was getting healthy, she was developing, we had good reports from all her doctors. We were half way through RSV season, I was dreaming about the Spring and taking them to the zoo and the park... and then, the rug got pulled out from under us. I don't get it, I really don't understand it. Why, if she was getting better, why would He take her back then?

Her last 12 hours still feel like an out of body experience...like my body was there in the hospital, in the ER, in the PICU...but my mind was somewhere else...it was not allowing me to comprehend what was happening eventhough I knew on a logical level exactly what was going on. It happened so quickly. Even when you read back to my account of that day and the preceeding battle with the flu...again, Zoe pulled through, just like she always did. How did she not have enough left in her to pull through again? It wasn't for lack of love or prayers on our part or desire to keep her with us...why didn't He let her pull through this infection too? I don't get it, I really don't get it. So my questions to God are Why?...why, why why? and Please....please, please, please let me see my baby again.

Prayer request

Hi All. I am asking you to add Jessica Redden of My Five Little Monkeys and her family to your prayer lists. Her husband has been in the hospital since Friday with meningitis. The diagnosis is not clear if it is bacterial or viral. Please pray for a full recovery for Jon and that it does not spread to any of their kids!

Thank you!!!

Ciraya, bubbles, and goldfish

The girls had a great day, start to finish! I don't let them have candy yet, except for the milkshakes for weight gain, so we got them other kinds of treats. Lily is all of a sudden enamored with Ciraya (Cinderella) and if you'll remember from way back when...we gave them their first baby dolls for their isolettes on Valentines Day in 2007...a tiny Cinderella for Lily, tiny Belle for Avery, and a tiny Snow White for Zoe...so it was fitting that their first treats were bigger, more sparkly, more beautiful Cinderella, Belle, and Snow White dolls. You should have seen Lily's face when Richard handed Cinderella to her...her eyes sparkled, her cheeks blushed, and it was like she was looking at some rare artifact and wasn't sure if it was real or if it was ok to touch. OMG! So cute, Richard's heart melted and I so wish I could have recorded that on film, it was a truly memorable moment. They were very sweet and seemed to know that the Snow White was for Zoe...they looked her over a bit, touched her sparkly dress and curled hair and then Avery said "see Zoe, see Zoe". We walked over to Zoe's shelf (actually the mantel in our family room which is my remembrance shelf for all things Zoe) and put her up there so Zoe could have her treat too!

The girls had OT in the morning causing napping to be way off schedule, I don't think Lily slept more than 15 minutes in the car on the way home. We got them dressed in their little cheerleader outfits (thanks An Teff and Amy). Lily was so delirious from lack of sleep she was swaying a bit and acting a little tipsy which Richard attributed to the fact that she was the UGA cheerleader (ha,ha).

We have been practicing saying trick or treat and thank you so when we got to Mema's house they knew just what to say. Mema had great little treat bags for them filled with bubbles, whistles, pumpkin straws, and organic cookies. She also included $5 each for the purchase of their first big girl panties...we're not potty trained yet, but it won't be long. They played with Mema, blew bubbles, ran around and generally had a fun time.

Next stop was Mimi's where they had yet another fun time. Always the health nut and knowing my rules about candy, Mimi gave them cheese sticks and raisins. What was fun for the girls was that my mom lives in a kid friendly neighborhood so they got to see that they weren't the only children trick-or-treating. They are always fascinated with older kids so seeing them dressed in costumes was all that more interesting.

We had one final stop at our wonderful friend Alice's...known to the girls as Ayice. Always displaying a heart full of love, Ayice had personalized treat bags filled with goldfish, animal crackers, and fig newtons all favorites of the girls. She also cooked a wonderful grown up dinner for Richard and I to enjoy. The girls just made themselves at home and had lots of fun. We even got Avery's first haircut done. She was looking a little mulletish so thankfully Alice took care of that for us.

An exhausting, but fun evening for all of us. The only thing that would have made it perfect was if Zoe had been there in her purple Palladin outfit! Maybe that's how she dressed up in Heaven last night.