Zoë’s Day

She was exactly 21 days old, four years ago today.

Had she been born on THIS day four years ago, she would probably still be here.

Sweet Zoë Harper.

Your little sister doesn’t quite understand why I keep scooping her up for hugs and burying my face in her neck today. She’s humoring me with lots of drooly “mwahs” and she didn’t mind sitting in the rocking chair for an hour while I smelled the almond soap in her hair. We looked at the photo of your name in the sand that hangs on her bedroom wall. We played on the playground and had snack. We did all the things you and I never got to do.

Even though you aren’t here, you are always with us.

We miss you.

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Lennox Maximilian

Four years ago today we sat in that room and held you for the first and last time.  We looked at your tiny fingers and stroked your dark hair.  We never saw you open your eyes.  You slipped into and out of our lives without ever making a sound.

We only had three short days with you and I can’t tell you how much I regret not being able to spend more of that time with you.

I think of you every day.  I miss you sweet boy.  You will never know how much difference your short little life made in this world.

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Three years

My dearest Sweet Zoë,

These three years have gone by so fast. I hate to sound clichéd, but it seems like it was just yesterday that we were there with you in the NICU. I can still remember everything, every second so vividly.

I miss you. Every day, I watch your little sister and I think of you. Sometimes, the fact that I have her because I don’t have you hits me so hard it takes my breath away. It is because of you that I remember to take the time to be in the moment with her. Dishes can wait; laundry will still be there later; this minute in her life only comes once. Thank you for making sure I know that. My promise to you is to do my absolute best to gather up as many of those moments as I can and truly be a part of them.

What can I say, Sweet Zoë? I love you. I miss you. I always will.

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How time flies

Goodness. The days fly by don’t they? I wake up in the morning with every intention of returning to my lonely little blog (is anyone still out there? ) and before I’ve had time to think, I’m crashing into bed barely able to string enough words together to make a coherent sentence.

Olivia Moonpie is 11 weeks adjusted today. On Tuesday, she’ll be 22 weeks actual age. Five and a half months old. People who knew her when look at her now in amazement. The baby who could fit in the palm of your hand is now 12 pounds of chubby cheeks and thighs. The preemie who spoke in growls and squawks now giggles and babbles and make the most endearing “HUUUU” noise. She smiles so big her eyes crinkle up. At this very moment, she’s sitting in her bouncy seat telling her toy bug a very long, detailed and humorous story as she smacks said bug around. She holds her head up to look over our shoulders, she stands on her own two feet for as long as you’ll help her balance. I expect her to roll over any day now and if she could, I have no doubt that she’d take off running. She’s willful and opinionated. She has a tooth coming in.

We made the decision to not push nursing on her. I went in with her to the lactaction consultant recently and learned that her latch was too shallow. I could try to retrain her to open her mouth wider, but after lots of soul-searching and a couple of feedings that dissolved into tears and screaming, it simply made more sense to accept that almost four months of bottle feeding and two months of latching incorrectly (although we’d been told she had an excellent latch at earlier visits to the LC) has created a bottle fed baby. I still pump and provide everything she eats, so my goal of a breastfed baby is still being met and now, we have nursing sessions during the day that are as much about comfort and snuggling as they are about eating. When she’s hungry, she gets a bottle. I was sad at losing out on an experience that would have been a given had things gone “normally”. I’d dreamt of putting my child to my breast to feed her and it is yet another instance of feeling cheated out of something. However, I am working on readjusting my perspective. Instead of feeling cheated because I can’t nurse her, I have the freedom bottle-feeding provides while still having the ability to enjoy the closeness of nursing when it suits us both.

This funny, smart, goofy little monkey has completely altered our lives. The grief that lay over our days like a fog has faded. There are still so many times I find myself thinking about the “what ifs” or wondering how different things would be with Lennox and Zoë running around. Oddly enough, if they were here, Olivia Moonpie probably wouldn’t be. But, as I hold her and feel her snuggle her fuzzy head deeper into the crook of my neck, I find I can think of them with all the love I hold in my heart for them and miss them without feeling ripped to shreds. I tell Olivia Moonpie about them often. She wore the pajamas I’d bought for the twins to wear home from the hospital. She snuggles in blankets made for them. Their car seats keep her safe. I miss them terribly, but part of them live in their little sister and I find that my grief has lost it’s razor sharp edge. Yes, I am sad that this morning I didn’t have two squirmy almost three year olds in my bed, but I DID have a snuffly, snuggly Moonpie there.

I am having a difficult time accepting that there will be no more Moonpies for us. After the Great Ordeal, I’ve been informed that future pregnancies would be very very bad and extremely irresponsible. My body does not take to pregnancy well. My body does not take to abdominal surgery well. We still have a large number of high quality frozen embryos, but unless we decide to find a gestation surrogate, Miss Moonpie will be my only child. This is hard for me to wrap my brain around. I had hoped to have two children. I really wanted Olivia Moonpie to have a sibling who was close in age. I know first hand what it’s like to grow up with half-siblings who are significantly older. It takes a very long time before the relationship reaches a point where the decade or more age difference stops interfering.

I’m trying to figure out how to order my life so I can stop feeling like I’m caught in a game of The Sims and all my needs meters are in the red. I’ve never been the most organized person around. Oh, I always have good intentions and start out trying to be orderly. And I DID manage to survive having the house on the market for an entire year. But, as soon as it was off the market, I was right back to my old habits. I cannot seem to actually put away a basket of clean clothes to save my life. I need to change this. Billions of other mothers manage to maintain their lives while caring for a small, needy sack of cute potatoes and so can I. I just need to figure out how they do it. And I need to learn not to rely so heavily on the fact that Shannon works from home. I can’t count on that always being the case and it isn’t fair to him now. So, my early New Years resolution is to figure out this whole stay at home mom thing. One day at a time.

Fifteen years ago, I would have told you I didn’t see having kids in my future. Now, I don’t know how I lived without her. I survived the NICU. I stumbled through bringing her home and learning to care for her without the safety net of nurses and monitors. She thrives. She smiles. She lights up when she sees either one of us. I guess we’re doing something right after all. So, if things are a little quieter around here, don’t worry. We have our ups and downs, and there are days when none of us manage to get out of our pajamas and days when it seems like someone (usually me) is doing nothing but crying and also days when the bliss takes over and there’s nothing for it but to sit and sniff her head. And, I think, maybe, just maybe, we’re starting to find our path again. We’ve made it through the darkest of woods and the longest, scariest of nights and the shining light that brought us out safely is a little Moonpie.

Lennox and Zoë would approve, I think.

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The past is never far behind

Yesterday, I went to the NICU for Olivia Moonpie’s noon feeding. I’ve been working with her on breast feeding every day at lunch. She hasn’t quite gotten the hang of it yet, but we’re close.

I like being there at noon. It seems to be one of the quieter times in the NICU. I like having the option to sit and chat with the nurses while they chart or just be quiet with the Moonpie. All the babies are usually calm because one way or another, they are getting full tummies. Most parents come before or after work. It’s just one of those times when it seems less like an intensive care unit and more like a nursery.

I was holding Miss Olivia Moonpie while she got her gavage feeding after a very unsuccessful attempt to nurse. Note: A diaper change that requires five diapers will wear a preemie out to the point that no amount of being hungry will make them suck on a breast. She was sleepy and full, I was happy holding her.

Then the nurse told me about what their afternoon held. It would seem that earlier this week, a 24-week preemie was born there and briefly admitted to their NICU until he could be air-lifted to the nearest level four NICU (that would be the one that Lennox and Zoë were born in). His mother remained at our current hospital. Unfortunately, the little one was not strong enough and was not going to make it. He was being kept on life support so he could be brought back to his mother to say goodbye.

I hugged Olivia Moonpie, kissed her head, dressed her back in her warm pajamas and tucked her in bed. As I walked out to my car, I passed by the ambulance from the children’s hospital.

Since then, I haven’t been able to stop thinking about that mother. I remember holding Lennox after they stopped trying to treat his last pneumothorax. They gave him morphine for his pain, unhooked all of his monitors and iv tubes and respirator and brought him to us to hold. He was a day younger than the little boy who died yesterday. There are so many things I’d like to tell that mother. She needs to know that it’s ok to scream and cry and just be miserable. She needs to know that the awful, horrible thoughts she has sometimes are ok, too. She should know that the nightmares may come, but that eventually they stop coming as often. I wish she could know how sorry I am and how much I wish she didn’t have to find her way through this deep, dark forest. I wish I could just sit in a dim room and hold her hand and let her know she isn’t alone. If I thought it would help, if I thought she would welcome it, I’d put Olivia in her arms and say, “It isn’t easy. It isn’t quick. It isn’t fair. But, it can and will get better over time. Believe me, I know.”

I have thought about asking the nurse to give her my card and tell her my story. I’d like her to know there is someone who has been there and who won’t judge anything she thinks, feels, or says because I’ve already done all of that. It’s like the “Each one, teach one” approach to grief.

These weeks in the NICU with Olivia Moonpie have been hard. Even though it is a different hospital and a different situation, we are surrounded by memory triggers. From the smell of the alcohol gel, to the sound of a CPAP, to the chime of a bed temperature alarm, to the hypnotic wave forms on the monitor that you watch obsessively and will to stay where they are supposed to. The little things overwhelm me. Watching her drink from a bottle can dredge up all of the thoughts of things that Lennox and Zoë never got to do. I smell Olivia Moonpie’s head and she smells like baby…milk and Desitin and Johnson’s baby shampoo. Lennox smelled of iodine and blood. Zoë … I don’t remember what she smelled like.

You struggle with the grief over what should have been and then realize if it HAD been, you wouldn’t have THIS. And you wish, just this once, that you could have had it all.

Mama, I don’t know your name. I won’t see you sitting by a bed in the NICU. I did see your lovely son being brought in, minutes after he was born. I just want you to know, whoever you are, that I remember with you.

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Four weeks old

Miss Olivia Moonpie turned four weeks old last night. In celebration of that event, her mommy and daddy actually gave themselves a night off. Normally, we visit at least once per nursing shift but yesterday we were both up there at 9am, then I was there at 2:45. Dad joined us at 3:45, and then he went back up there by himself to give her a bottle at 6pm. It felt very strange not to be scarfing down our dinner so we could get to the NICU by 8pm, visit for a couple of hours, then drag our exhausted behinds home somewhere between 10 and 11. However, I think we are going to try to make Saturday nights just Mommy and Daddy nights by spending more time there during the day.

In case you were curious, this is how our weekday schedule usually goes:

Midnight – Mommy pumps for 25 minutes
1am-3am – sleep like the dead
4am – Mommy pumps for 25 minutes and then makes Daddy wake up to bag, tag, and freeze the milk
6am – Daddy gets up and starts working
7am – Mommy pumps, showers, eats, and gets dressed
8:30am – Mommy and Daddy are hopefully on their way to the NICU for a morning visit and to try to catch the neonatologist for the latest update.
10am – Heading back home
11am – Daddy is back at the dining table working while Mommy pumps for 25-30 minutes
noon-ish – lunch
1pm – Mommy pumps
2pm – Ideally, Mommy takes a nap, but typically she tries to do laundry or some other chore
3pm – see 2pm…although now that Olivia Moonpie is allowed to try non-nutrative nursing, Mommy may start trying to be at the NICU for this feeding.
4pm – Mommy pumps
5pm – Mommy starts fixing dinner and trying to get Daddy to wrap up work
6pm – dinner
7pm – more f@#&^ing pumping 😉 (I know why I’m doing it, and I wouldn’t stop for anything, but boy howdy is it exhausting/uncomfortable/disruptive/time consuming)
7:30pm – back to the NICU
8-10pm – A nice visit with the Moonpie, a chance for Daddy to give her a bottle and a trip to the parents’ room to pump for Mommy
10:30/11:00 – back home to fall into bed for a bit

Somewhere in all of that, we shower, play with the cats, put gas in the car, go to the grocery store, try to clean the house in bits and pieces and maybe even talk to one another. I’m not complaining. I will do anything for Olivia Moonpie and I know when she comes home it will be much saner. That 25 minute drive each way to the NICU eats up a lot of time, as does the pumping what with the washing of the hands, setting up the parts, getting settled, actually pumping, bag and tag, cleaning up, and sterilizing.

But, that’s not why you’re reading this. Olivia Moonpie is four pounds, 2.6 ounces. She has chubby cheeks and little dimples on the backs of her hands. She spends her time trying not to be swallowed up by her newborn sized pajamas (she’s too long for preemie sizes), sleeping, and looking around. She is doing really really well learning to drink from the bottle. She’s not quite as interested in the whole nursing thing, but I’m trying not to take it personally and will keep working on it with her. At her measurement last Sunday, she was still 17″, which makes us think that the first time she measured that might not have been correct. She’s very wiggly, which makes it hard to be accurate! She has lots of dark hair and her eyelashes are starting to get darker. I have tons and tons of photos that I just need to get off the camera. She met her Momom (my mother) and even got to cuddle with her this past week. She also got to finally meet her big half-brother who had to get over his cough before we would let him visit. At 16, he was about as impressed with a tiny baby as you might expect. 😉 Her bedroom here at home is almost finished…I just need to make the curtains and get some artwork on the walls. Yes, I will post pictures.

Shannon’s co-workers threw me a baby shower last Friday that was a lot of fun. I’ve really missed getting to be around other people and it was VERY nice to get to go somewhere other than the hospital! They gave Olivia Moonpie some lovely gifts that I can’t wait for her to get to use. I really hope she can come home soon. Next week, we’re going to see if the doctor can give us an idea of when that might be.

Every so often, I get blindsided by the what-could-have-beens. It’s hard to escape from that. We’ve had to tell the twins’ story over and over and some of the things we’re using in her bedroom were originally purchased for the twins. There are moments when my heart gets squeezed just a bit too hard. If they were here, she probably wouldn’t be, and that would be awful, but I miss them so very very much. She’s doing all those little things that they never got to. I try not to fall into that trap too often, but sometimes you forget to look for the pit and before you know it….

Ok, gotta run. Can’t get too off schedule!

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Thank you!

You all raised somewhere between $250 and $300 for the March of Dimes on behalf of Lennox, yesterday. I’d be more exact but, um, I forgot to write down how much had been donated to his band previously … I think it had $350 already on it.

Anyway, that’s a fantastic amount for one day on short notice! Thank you, thank you, thank you!

And we also thank you for remembering with us, for holding our Lennox in your hearts. That is as important as any donation.

The link to the bands is always in the sidebar, should you ever find yourself just sitting around wondering, “Where could I make a worthwhile donation today?” 😉 I’m just sayin’!

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The odd places you find reminders

You never know when you are going to stumble across something that brings it all back, that makes you say, “Exactly.”

A Darker Place, by Laurie R. King…a suspense/thriller novel about cults isn’t the sort of book I expected to pick at barely scabbed over wounds but reading these two paragraphs made me have to put the book down for awhile.

…not the least of which was Anne’s oft-stated preference not to inquire too closely into the darker places of her mind, a firm conviction that it was at times better to let sleeping Minotaurs lie rather than continually offering up virginal portions of herself to be devoured by them.

And below the anger and the confusion and the craziness, underlying it all, she could feel the disturbing roil of her old, tired built, as worn and dull as a river rock from all the long years of handling. She was asking it now to support and energize yet another hard slog through the most distressing times of her past, a past that she thought she had earned the right not to forget, but perhaps not to dwell on quite so much. The dreams she had were no longer utterly devastating, the flashbacks she experienced no longer galvanizing; the memories had become, at long last, a part of the vocabulary of her inner life.

Mine have yet to lose all of their rough edges in the time current, even with the constant, daily handling. Dreams start to lose their power to devastate, to ruin an entire night and day. Flashbacks rarely necessitate rapidly seeking out a safe place to pull the car over. A turn of phrase in a work of pop fiction, however, prods at the Minotaur even if it doesn’t completely awaken it. It’s a thin veneer indeed that we form over these memories to try to protect. The cracks show through when you least expect it.

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yet another update

Just checking in. Shannon and I took my parents up on their offer to escape for a few days and let them feed us until we couldn’t move. It was nice to spend the long weekend being taken care of. We tried to hit favorite restaurants and took a driving tour of a city I hardly recognize anymore. Nothing makes you feel older faster than driving down a street you used to know like the back of your hand playing the “Didn’t that used to be a….” game. Still, it was lots of fun and gave us a feel for where we hope to be living in a few months. The break from phone, mail, and internet was nice. I’m still avoiding them a bit even now that we’re home. If you’ve emailed me in the past week, I promise I will eventually open my email and read what you wrote. I just can’t right now.

I am struggling against the pull of The Pit. The confluence of events lately have done a number on my very tired psyche. I find myself feeling overwhelmingly exhausted and able to fall asleep with little warning, even if I’ve just woken up from a full eight hours. Motivation is hard to come by, which leads to guilt over the length of my to-do list as I realize I’ve spent another day doing very little. I do manage to get up, dressed, and fed. I try to set small goals. Shannon watches me closely and either scolds or cajoles as appropriate. He’s set February as the point at which we try to put the past behind us and really look to the future. He reminds me that moving on isn’t the same as forgetting. Somehow it still feels wrong to me, regardless.

Monday’s blood test was not as promising. My hcg only dropped about 10 points from last week and I’ve had no bleeding since before New Year’s. Dr. N is concerned but not overly so yet. I go back again for another test on the 12th along with a consultation with her. I assume she wants to discuss what happened, what we will need to do if my hcg stalls out (I assume a d&c) and where we go from here. I’m trying to figure out what my answer is to that.

So, that’s it. I’m still here, and sort of not. I’m kind of a lurker on my own blog. Thank you for all of your kind words on both the 3rd and the 5th and for helping me to speak their names.

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Lennox Day

Today is Lennox’s day. He shares his birthday. Today is his very own day. Zoe will have her own day in three weeks.

Today is the day I remember my very tiny, very sick son.

I didn’t get to see him until he was already a day old. I held him for the first time as he fell asleep for the last time.

Today is Lennox’s day.

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