happenings

another set of crazy weeks, complete with household economic disaster, sick children and adults, lack of babysitters, and encounters with state agencies i never imagined as a part of my life. oh, and my camera is malfunctioning again, or it might just be the batteries are not charging properly... whatever the case, i haven't had the energy to get to the bottom of it. funny, but without a camera, it's harder to stop on by this old spot.

the boys are changing before my very eyes. even more than when they were tiny babies, now they are two (seriously, how did this happen?!?), and they are just exploding with change. i can assume that pretty soon they will be talking in ways i find more comprehensible, and we will only have as memories words like "baba-zur-zur" (bulldozer), "mo-cicle" (popcicle), and "beeping" (sleeping). they string together these amazing little sentences now: "i climbed up seat!" "i see a red motorcycle!" "no car. go a playground now." and i sense their babyhood falling away.

that's not to say i don't celebrate and relish their changes - i feel like i could dive into each one of them and float in my joy at their little personal triumphs. "i did it myself!" is a new favorite sentence this week, and i have to say, i feel their sense of accomplishment and feel wells of adoration. these little people learn and experience so much in such a precious short time! shoghi suddenly holds his fork, spoon, pens and paintbrush "properly," while max did pee-pee in a potty for the first time... shoghi has had such a fast leap in language skills since july - he's gone from single words all the way to 5 and 6 word sentences, while max has mastered the art of marching, jumping off furniture, and sings along with his favorite (barney, blech!) songs... it's really so incredible that suddenly our home is filled with this child energy.

but still... really for the first time, i have the sense of this major first chapter in their lives coming to a close. the baby years... i can barely type it... they are coming to an end. it's likely that they are going to be my only children, and while i am so happy and content (and overwhelmed, and stressed out) to have both of them, there is a little twinge of sadness along with it that i won't have the opportunity to have babies anymore.

let's be real, too... i think part of it is something that you might only understand if you have multiples, or if you are very close to someone who does... i think part of it is that there really is a loss as a mother/child unit, that i didn't get to have that quiet moment of time with each of my sons as babies. that time when there is just the one baby to focus on, even if there are other siblings already in the family. there's quite a shift that has to happen when mothering twins (or more) - your intentions for how you will attend to your child have to yield to the reality of caring for two children of the same age. there is definitely loss there for me. things i wish i had been able to do differently for each of my boys.

and while i'm talking about leaving these baby years, let me also say that suddenly i am also thinking - or at least feeling (because really, when do i have time to actually think these days) - the strange gulf that occurred for me (and for each of them?) during those long four weeks they spent in the NICU. it's still so hard for me to accept that this hospital was not set up to allow parents to stay there 24 hours a day... the fact that my fragile little babies were there without me - without anyone except the NICU staff - for hours each day.... ugh, i get a pit in my stomach just thinking about it. it's one thing that i actually do have regret about - that i wasn't there for all of it. that i didn't somehow find a way to be with them every moment of their first breaths, their cries, their certain bewilderment at how it felt to be removed from the warmth of my womb and placed on those hard beds, with masks on, air on their exposed skin, the billi-lights... ugh. it's horrible, and i desperately wish i had done differently, even though i did the best i could do at the time...

so anyway, here we are. summer is falling away into blessed autumn. the rains are returning, and the air is cooler. my life is about to change as i find a job, as the boys transition into 20 or more hours a week of day care. and my babies... my strong, fast, persistent, funny, cheeky, introspective, determined, lovely boys are stepping into themselves.

remembrances

One year ago today, I was lying in bed pregnant as can be, and was woken by an unnerving sensation that I was leaking fluids. It was one in the morning, and I was 28 weeks pregnant with the twins. I went to the bathroom to confirm my suspicions, then called my midwife who I'd only met twice before. Her calm advice to wait until morning didn't sit well with me - I'd read way too much about twin pregnancy and my experience with perusing dual care with both a homebirth midwife and the department of maternal and fetal medicine at the hospital had brought with it enough sense of caution to heed a late-night warning. With much hesitation and feelings of guilt about waking a friend from precious sleep, I climbed the stairs and called out to Korin. We drove to the hospital, exchanging reassuring thoughts - it was nothing, they'd check me out and I'd be home in a few hours.

Sadly, that wasn't to be. My most terrible, vivid memory from that long night came about an hour after arriving at the hospital - I had just been examined and was still lying on the awful gyn-ey (get it? gurney for ladies? why must we endure dumb humor on top of an already uncomffortable situation??). The doctor was wondering if my water had broken, and was about to do a swab to confirm. And suddenly, horrifyingly, Baby A's bag of waters unmistakenly broke.

Amniotic fluid rushed from me, and with every breath, every sob, continued to flow. I remember lying there, crying uncontrolably, saying to Korin that I felt as if my babies' lives were pouring out of me. The resident who was with us when this happened told me that I would likely deliver the twins within 24 hours. It was truly one of the most grief-filled moments of my life. Twenty-eight weeks, zero days. I knew the risks of delivering that early.

***

Of course, we all know how this story ends. I hope you don't mind as I recall these things here for myself. I haven't given a lot of deliberate attention to the stressful birth of Shoghi and Maxwell, either within myself or here on the blog. I find, though, that now that these hot days of summer are passing by, I am keenly aware of what was going on a year ago. My gratitude for how things turned out is beyond measure. At the moment, though, it felt very precarious, fragile, and uncertain... Since I have never told their birth story, I figure this is a good place as any to start.

(photo by Amy Crawford)

catching up, part 2

The Nursing Update

Where to start? I don't think I've ever really posted fully about our adventures in nursing, but I want to record this for myself, and maybe there's something here that could be helpful to someone else in a similar situation. So, if you're one of my uncles, or you're my dad, and you would rather not read about this part of twin parenting, then just hang in there - I'll have another post up in a few days, I hope!


I'm very committed to nursing the boys. Despite the fact that they're already almost 3 months old and neither is yet nursing completely, I am striving to get there. I'm not really a person for politics or making big social stands, so for me, the decision to try so hard to nurse is mostly because I feel strongly that it's the best course for us, regardless of how hard it might be for me now. I've only got an uncertain amount of time alone with my sons before I'm going to have to start working again, and that makes me even more determined - I want that nursing relationship with each of them, and I hope that intimacy can continue even after I go back to work. Pursuing nursing has become my primary occupation after taking care of their other needs. It takes a lot of time, patience, outside loving support and, believe it or not, money, to succeed at nursing when you have the challenges I've encountered... and yet I persist...

Instincts

So, here's what I think - if you ever find yourself the first-time parent of a baby in the NICU and you want to nurse, find your gut feeling and go with it. Then, find the best lactation consultant you can outside the hospital system, and get them to come to the hospital and help you and your baby, immediately.

I got pretty bad advice at the NICU. I should have been coached to begin pumping as soon as I got back to my room after being in Recovery. I should have been pumping every 2 hours, in my room at the hospital and at the bedside. I didn't start pumping at bedside until probably 5 days had passed! I did try on Day 1 to get both babies to breast, but I really knew nothing about preemies and nursing, so I focused more on the care I could provide them, like kangaroo care, changing diapers and giving bottles. They call babies sucking a bottle "nippling" in the hospital and actual nursing "practice nursing" - so strange... it's just one of the many ways that the natural process gets screwed up.

The other thing they do in the hospital is feed in 3-hour intervals. Now, if you've had a newborn baby at home and nursed, you will no doubt know that nurslings do not nurse every 3 hours... they nurse much at closer intervals! So, after a month of scheduled feedings, the boys' internal mechanisms for hunger were set on this schedule. Getting them to have smaller, more frequent feedings has been all but a failure.

Along the same lines, I have found it really, really hard to get away from knowing exactly how much they are eating. Whereas moms who exclusively nurse become tuned in to their baby's hunger cues and nursing habits, all i had was a schedule and a number of millileters. Those numbers were so important in the hospital, they impacted when the boys could come home. I never pumped as much as they ate in any feeding, so I was left with fear that they would starve! Still, even after having been home for almost 2 months, it makes me uneasy to not know how much they've gotten from a nursing session, which makes me want to reach for formula supplement if they're acting fussy.

All-in-all, I think my experience was one which led the 3 of us to suppress our instincts about nursing and hunger.

Galactogogues

No, I'm not talking about some Sci-Fi creation; galactogogues are substances that help increase breat milk supply.

When the boys were born at 32 weeks, I had many factors against me in the breastmilk supply department:

At 35, I'm in that "advanced maternal age" category;

• c-section;
• premature delivery;
• polycystic ovarian syndrome (also the cause of my infertility);
• chronic hypertension.

I am taking a ton of herbs (fenugreek, blessed thistle, goat's rue, juice plus, prenatal = 9 capsules 3x a day) and a prescription for domperidone.

Again, because I'm not solely pumping, I haven't got a strong sense of how much I'm producing... right now, it's not enough to feed one exclusively. I'm gratefully receiving some donated breastmilk from a local friend, which always goes to Max, since he's not at the breast much.

So that's where we've been.

Where We Stand

Shoghi is, and has been from the beginning, the stronger nurser. I'm currently nursing him on demand, and six times a day, I also give him supplemental formula with a lact-aid. By now, he's an old pro at latching on. Several weeks ago, I took him to an ENT and had his frenulum (tongue tie) clipped, and this helped to free up his tongue and improve his latch. He can nurse in several positions, and he sleeps next to me so he can side-lie nurse throughout the night. How easy it would be to just nurse one baby! How much sleep mamas of singletons must get!!!

The plan with Shoghi is to drop his supplement amount slowly over the coming weeks until my supply catches up with his needs.

Maxwell is pretty much starting at the beginning of learning to nurse. It has taken having his posterior tongue tie clipped twice, the last time being last Friday, to free up his tongue mobility and allow him to latch well. He gets all his calories from formula, given to him by bottle. Now he is finally able to "pratice" nurse, so whenever I can. I start his feeding with 1oz of formula, offer him the breast for as long as he wants, then finish up with the rest of the bottle.

A note about frenulum clips - everyone told me it wouldn't hurt the baby. In my experience, that proved to be false. Seems a little like the old supposition that circumcision didn't hurt. I'd recommend giving babies homeopathic aconite for both the pain and fear, and have some baby pain reliever or arnica on hand for afterward.

I'll be meeting with the lactation consultant again next week, and I'll let you know our progress then. It'll definitely be easier to post about this next time, since I won't have to start at the beginning.

catching up, part 1

10/16/08 How could it be that 2 weeks have already passed? I guess it's a sign of the times, and a sign of things to come, that I haven't had time to email or post anything here for so long. I've had such poignant thoughts in my head for marking the milestones that came upon us like rain these past 14 days, but attending to the boys, and once in a while myself, made taking such time impossible.... I'm going to try to post about these significant dates in the days to come. Here's the first:

Milestone - 40 weeks - October 2, 2008

Release the Stars

Today marks 40 weeks gestational age for Shoghi and Maxwell - their official estimated due date. We have been together since January 10, 2008, and we've been getting to know each other since.

first ultrasound showing twins.

Way back when I was only a few weeks pregnant, a small group of us tied red strings around our wrists as a symbol of protection for the pregnancy. At the time, the doctors were wondering if the pregnancy would be viable, and it seemed like a gesture to the universe that I intended to carry these babies all the way.

here i am at 31 weeks - a week before they were born...

was i ever this pregnant?

korin, ruby and i on a rare outing on hospital grounds during my time on bedrest

A few days before giving birth to the boys, Korin hosted an intimate birth blessing right in my hospital room. My mother was there, as well as my sister, Korin, and a second friend, Atika. We read all of the blessings from the beads exchanged from my due date group on Mothering, we said prayers and shared wishes and fears. We all tied another red string for a safe birth. (I'll add photos here when I get them from those who attended the blessing)

Well, all these wishes for protection have come to pass - a safe gestation and birth were had, and then a healthy stay in the nicu...

Auntie Laurie & her collection of arm bands

my mom, aka "memere" in the nicu with shoghi

could Max have ever been so small?

...and now that they've been home and reached their full gestational ages, it's time to cut the cord, so to speak.

shoghi and max, first week at home

maxwell & shoghi, 3 days before due date

Tonight, Laurie, Korin and I cut off our bracelets. Mom had cut hers off when the boys came home from the hospital... it feels like these graduated stages of bringing the boys into the world. It was a tearful moment - taking that symbolic step of allowing one stage of protectiveness come to an end. Seeing my two miraculous sons living healthfully in this world of being takes my breath away - I know that as the years go by, layer by layer, I will indeed be releasing them to the influences, the challenges, the triumphs and tests that this life brings. So I make the wish that most parents must make (would that I could say "all parents") -

that my boys find this world to be a kind place,
that they be protected by forces greater than me, that they find joy and friends,
and that they know forever and always how very much they were wanted,
waited for, and cherished, breath by breath, day by day.

May this world receive my children with as much love as went into their creation.

miscellaneous

(taken in part from a recent email)

Stats:
Shoghi has hit the 6 pound mark, and Maxwell should be reaching EIGHT pounds today or tomorrow! Both are maintaining their individual growth curves, so the weight difference is only reflective of their unique physiologies.

Shoghi is doing better. The apnea monitor, which I only use at night, has gone off twice for low heart rate, but I was actually already helping him through a choke at the time. It really does help me sleep, knowing that if anything happens, it will wake me. His reflux seems a bit better now that he's on the zantac - he's not making that sour "mister yuck" face anymore, and maybe it's his bigger size that is helping him handle incidents of spitting up better. Even though I have to help him sometimes by clearing his nose and mouth, he also resolves more on his own.

Max is leading the way in longer sleep stretches - he is sometimes extending the time between feedings to 4 hours at night. It's a miraculous thing. He's so chatty - making noises all the time, especially in his sleep! He spent a night with Auntie Korin and then 2 nights with Auntie Laurie, and both of them commented (lamented) on his vociferous ways. He's also starting to coo, which is super cute.

Nursing is coming along! Shoghi is nursing at least 20 minutes for each "meal" and supplementing with bottle for the rest, and Max isn't far behind. I'm still waiting for my supply to keep up with their needs, but I've had to drop a lot of the pumping, for the sake of my sanity and so that I could actually meet the boys' other needs. Both of them seem to have a tongue tie, so I will have them checked by and ENT doc soon. That apparently has a big impact on nursing. We abandoned using the nipple shield several days ago and never looked back. Now I'm experimenting with using a lact-aid, which involves using a small tube to allow the baby to take in formula while nursing at the breast. This transition to breast can be a long one, but our dramatic progress over the past week is really encouraging. I'm not going to make any decisions about long-term strategy until we've tried to increase nursing sessions and supply for at least another month.

They boys are both so beautiful, it just melts me. After all the years of longing, loss, and pushing through, I'm astonished to find myself the mother of these two perfect babies.

home again, jiggedy jig

OK, we're all home again; hooray.

Right now, with 2 sleeping babies and a ton of stuff to do, I'm employing the hands-free method of expressing breastmilk- i.e. a modified sports bra. We also call this the "fem-bot" look here, but despite much discussion/teasing, there will not be a photo of me sporting this rather hysterical but at the same time strangely demeaning look. If you're a newly pumping mama, though, definitely try this out. The method in the link above is far more complicated than what I've done, which is to just cut 2 very small holes in a tight sports bra through which to pop the horns. Seriously, after a month of holding the pumps, being able to type, soothe a baby, or write an email while pumping is a huge gift.

Anyway, I don't know where that tangent came from... I guess milk is on my mind, since now that both boys are home again my life is pretty much all about milk, whether in the form of formula, expressed breastmilk (EBM), practice nursing with the babies, changing diapers, or eating/drinking/taking herbs in order to produce more. All of a sudden, we have no discernible schedule anymore, which means I will have even less sleep than before Shoghi went back to the hospital. It's an intimidating prospect, to say the least. When I read that "surviving the first year" is the hard part of having twins, I really had no idea just how true that statement would be. and this is only week 2!

Laurie spent the night last night, taking over full care of Maxwell through the night so that I could care for Shoghi. He came home yesterday with a script for xan.tac and an apnea monitor. I'll be using the monitor only for nights, so I can get some sleep without constantly worrying that he will choke without my knowledge, so for the first night, I wanted to see how it would go. The docs had told me that the monitor falsely alarms quite a bit, but I'm happy to say it didn't sound once all night. I'll try to take some pics so you can see how it works. Shoghi also had his first chiropractic adjustment last night - hopefully this will eventually help him with the reflux.

Tonight, care of both babies will return to their mama, so I'm going to try to rest up this afternoon in anticipation of a long night. We go back to follow up with the pediatrician on Monday.

apnea countdown, continued

All day long, I agonized over my last post... I don't like to complain too much about my experience, and yet again, I'd like to paint a realistic picture of what this has been like for me, for us. I'd like to think that someday, I will be able to take what I've learned here and help someone else get through their own NICU circumstances. If that's a little too ambitious, then maybe more simply, I'd just like to be able to record my experience, for myself, for my boys, for my family and friends. That experience, like many others life brings, is shaped with so many facets of emotion and thought.

These days, I don't have much time to process, or to think out how to say things. I'm weary by the time I get home from the hospital at night, and if I use the computer at all, it's to quickly check email, then to edit photos, and lastly, to put up a blog post. Then of course I also have to pump for the boys, as soon as possible after I get home, then again before bed, and if I'm lucky enough to drag myself out of bed at 3 or 4 in the morning and again at 6. It's hard to get up and sit alone in a room with a breast pump in the wee hours of the morning... I'm assuring myself that while it will still be hard when the boys are home, their cries and hunger will leave me no choice, and so it will be in some way easier. At the very least, I will be interacting with my children, and not a bunch of plastic parts. You know what I mean.

As the boys have become more alert, I've been looking for some simple
black and white "toys" for them to look at. This morning, Laurie brought
over this beautiful mobile she made just for the boys.

max, enthralled.

Anyway, this leads me to my dilemma about my post from last night... and my perhaps dramatic way of requesting that people not remind me to see the silver lining. I don't necessarily have a clear thought about how I should have written it differently, but the alternative would have been for me to write nothing at all, and I'd rather be able to just put out an emotional plea that comes from a slightly irrational state.

Last night I didn't tell the whole story. The whole story would have included the part where I got to the hospital and was told that they both had had apnea spells, but there was no documentation of the spells except in the computer... and the artifacting from the heart and respiratory leads can look like a spell where none had actually occurred. In other words, the night nurse had made no notes of intervention, which is very, very unlikely in the case of an actual apnea event that would have lasted over 30 seconds. I never was able to get an answer as to what had happened or if the spells had been authentic, leading to some rather profound frustration at the idea that they might be spending extra time in the hospital when they could safely be home with me.

Today, Max & Shoghi had their carseat tolerance tests -
which sits them in their seats for 90 minutes to see if they
have any apnea spells at this angle.
Both boys passed, but Shoghi will go home in a car bed,
since he is too small for the carseat.

Today's request, then, is rather different... it's a request to simply be with me, with us, through this next phase of the countdown, without congratulations or too much excitement. Today, the doctor told me that, barring any issues, Shoghi and Maxwell will be coming home on Saturday. Now every hour is fraught with excitement and fear, all at once. Will I be buckling seatbelts on my little guys on Saturday, or sitting at their bedside again with a heavy heart? I tried to put my faith in them having grown out of their apnea, and went tonight for a last-minute run to get supplies... baby bottles, waterproof pads, sleepers, and more diapers. Me... shopping for these things for my babies, my boys, my sons. It makes my chest tighten with emotion just to say the words "my sons."

This part of the journey is one I haven't yet shared with many outside my immediate circle... this feeling of disbelief, this sense that, without having them with me physically, they are not actually my children. It is something that I can almost not touch with words, a feeling that is vague and sad and something like instinctual, and perhaps explains some of the pain of this separation we've had for the past month. Suffice to say, I have been holding my breath for 4 weeks now, waiting for the moment when I can take my babies into a room and close the door behind us, to lie with them and really look at them, to hold them and share the knowing that we are indeed a family.

Hopefully that sacred day is less than 36 hours away. Sit with me awhile, then, if you don't mind... wait and hope with me that when I write next, it will be with my beautiful sons, home at last.

34 weeks

Shoghi on left, Maxwell on right

Gestational age, that is. Today marks 34 weeks of life, and tomorrow marks two weeks since my beautiful boys were born.

Today, they are both at least a half a pound heavier than their birth weight, and continue to thrive as expected. They're heartbreakingly dear to me, and it just kills me to leave them every day. After speaking with the doctor today, it's clear that the plan remains the same as it was when they were first born: they will probably stay in the hospital until about 36 weeks gestational age. A terrible thought for their poor mama.

You might think that after all I went through to keep the boys on board for 4 extra weeks, combined with their exceptional health status, I'd just be filled with gratitude and patience, and happily go along with this plan... but honestly, though I am of course very, very grateful for this set of circumstances, it is one of the most painful things I've endured to leave my sweet boys in the hospital day after day. I worry about them when I'm not there, and worry about whether our separation during this sacred time that's supposed to be our time to bond with each other will impact our relationship long term. It might not be the most rational thought, but it haunts me and fills me with deep sadness.

Here, in lieu of photos of my own, are some blog posts that will melt your heart, featuring of course, dear Shoghi and darling Maxwell. (if you're the weepy type, make sure to grab a tissue or two)

And since I'm finishing this post on their second week birth day, I send my most profoundly loving and tender thoughts their way on this clear, bright morning. Love doesn't even describe how I feel for you, my sweet, beautiful boys.

Laurie's blog: back to work

Korin's blog: dear universe

Laurie's blog: nice to meet you

Maxwell, last Friday, celebrating one week

more progress

First there was Max, who graduated into a crib 3 days ago, after being able to maintain his temperature:

Max, 7 days old

Then, today Korin and I arrived at the NICU to discover something that reduced us both to weeping - Maxwell got a new bunkmate overnight...

I love you, brother!

holding hands

here's their first photo of them in the same crib

Here's where we stand:

Both boys are off of all interventions except the feeding tube. This is used when they wear out from drinking their bottles, or "nippling" as they call it.

Maxwell and Shoghi have both successfully latched on and nursed for 10-minute periods.

Criteria for coming home: 1) the ability to drink all the required volume of breastmilk or formula - that is, about 35ccs every three hours. 2) graduate from having any apnea "spells." Both of them are still having them, Maxwell with more frequency than Shoghi, but they bring their heartrates up themselves in just a few seconds. This is normal for their gestational age.

I'm thinking it's going to be about a week. Honestly, I'm getting pretty weary of this set-up, so I can't wait.

my little joey

((First, let me just thank all of you for your loving comments and wishes. I've loved reading them over the past days, and feel surrounded by the most amazing and powerful support. I have very little computer time, especially now that I'm not in the hospital, so I hope you'll bear with me when it takes a while to respond to your emails and calls... I have received all of them with love.))

Shoghi's gorgeous hand

Today I spent about 7 hours at the NICU with Shoghi and Maxwell, and for most of that time, we practiced Kangaroo Care. All this means is that I open my shirt, unswaddle or undress the baby (I do this one baby at a time) and we snuggle skin-to-skin. Some of that time may be spent practicing nursing, but mostly, the boys just sleep. Here are some photos of Shoghi, who looks beyond content, don't you think? I was trying to get his whole body, with his teeny legs curled up underneath him, but didn't quite capture it.




And because I can't leave him out, here's Max, snuggled up in his isolette this afternoon.


My goal for tomorrow is to give the low-down on all of the amazing progress my beautiful sons are making. Assuming they keep going as they have been, they'll be home before we know it. (well, maybe not before I know it, because every day of separation from them is torture, but you know what I mean!)

See you tomorrow!

heavenly day

Yesterday gave us cause for celebration: Maxwell and Shoghi graduated from their previous beds into isolettes, their IVs were removed, and all of this made it possible for us to get them close enough together for a reunion. It was a 3-step process...

Mon was holding Shoghi and I was feeding Maxwell, so we brought the chairs closer...

Shoghi sensed something was going on and started crying... meanwhile Max stopped sucking and opened his eyes wide to find his brother. He was looking to his right and trying to turn his head until they were finally beside each other...

Peace at last - brothers side-by-side; both of my sons in my arms.
I don't even have words for this kind of elation.

As soon as they progress from their isolettes, they'll be co-bedded in an open crib. I can hardly wait.