success and challenge

Laurie has been using the idea of documenting the day's successes and challenges in her daily posts, and tonight I'm extra tired and have a cold, so I'm just going to steal the premise from her.

Today's success for me was focusing on a single task during my babysitter time. I printed a bunch of burlap labels for new baguette bags and other sewing projects I'm working on for the farmer's market. This was made easier by setting everything up for myself yesterday. Tonight while we watched This Emotional Life, I started the hours of ironing that lie ahead of me. I don't usually have the capacity to work at night, but maybe it was fueled by another success:

an easy bedtime. Korin reminded me to give the boys some homeopathic chamomila before bed, and I don't know if that's what did it, but it was a deliciously easy, and happy, sleepytime for the boys.

My greatest challenge today was probably that I just couldn't think of anything novel to do with the boys this afternoon. They both had unusually short naps, so they were tearful, clingy and grouchy, and having something interesting on-hand would have been good. Instead, we ended up just going on a long walk in the light rain, which was just fine for all of us.

It would have been nice to have kids when I was in my 20s - my creative energy was so powerful back then, and I know I would have had all sorts of homemade games at the ready. It's not like I didn't try, though, so we'll all just have to deal with me being a tired old mum! ;)

And today's photo:
This morning a friend asked some of us to send her our birth photos. Looking back through that visual record of the boys birth was full of emotion. This photo made me remember the moment, probably a half an hour after they were born, when I was finally out of recovery and allowed into the resuscitation room next to the OR. I asked the nurse:

Can I touch him?

It stirs a well of sadness that I didn't get to even touch my boys until that moment, and that it took hours after that for me to be able to hold them. I don't think about this often, nor do I really feel traumatized by our birth and NICU experience, but remembering the barriers of separation between me and my babies really is very sad for all three of us.

I wonder if I will have the opportunity to give birth to another child, and whether we will have that skin-to-skin moment of birth and those lingering hours of mama-baby connection afterward.

well babies

I'm finding it very difficult to post as often as I'd like these days! I must have 3 or 4 posts that I've started, only to be distracted by one or another pressing matter.

We had our 9 month well baby visit this afternoon, and the kiddos are doing fantastically well.

Shoghi
height: 27.5"
weight: 19lb 8oz
he's climbed from being off the charts for low weight at birth, to now being in the 25th percentile for all 9-month babies.

Max
height: 26"
weight: 18lb
he's climbed from being off the charts for low weight at birth, to now being in the 12th percentile for all 9-month babies.

Excellent!
Max's eczema is a little more controlled now, except it's appearing on his chest and arms, which really makes me sad. It's the worst on his little hands. We are using the Weleda cream (thanks for the recommendation, none-such!) and hydrocortisone (not on his hands). Shoghi still has a persistent cough, so he was evaluated for asthma today, which they concluded he is not showing signs of at this point - hooray, that was wonderful news.

We also took a walk over to the NICU for the first time since their discharge. It was strange to walk those halls, and a little meditative, too. The last time I made the walk from the Children's Hospital to the Main Hospital where the NICU is, I was still pregnant, and was not in fact walking. Every other day, if I had a visitor while on my month of hospital bedrest, I would get my 30-minute break from lying flat, and they would push me through the halls, finding a terrace in this wing or that to get some fresh air.

Taking the boys there today was like a little graduation. I'd actually been meaning to go there for a few months, but the last time we were at the campus for a doctor's visit, the boys were too fussy. Anyway, it was good to go, to stand out in the hall (we weren't allowed into the unit) and chat with some of the nurses who cared for them for the four long weeks they were in the hospital. One of the nurses remembered that Shoghi had been readmitted for reflux that was causing him to stop breathing, and it touched me that she really remembered them after so long. They made all the appropriate oohs and aahs about thier robust, perfect, big bodies and said how cute they were. It was very sweet.

At the same time, the whirring and beeping of all the monitors, the sterility of the NICU pods... it was all right on the other side of those locked, swinging doors. The grieving parents, the ailing, growing, crying, sleeping, kangaroo care-loving babies.... it was all right there. That was hard. Remembering so viscerally that time of longing, fear, disappointment. I have been thinking a lot about that time lately, realizing that 9 months later, I still haven't written about their birth. Our nursing woes began in those rooms; their first hours were spent without me in those bright, open beds; our sense of triumph and amazement to wrap their incredibly small (but 5 pounds!) bodies in our moby wraps and carry them out, first through those locked doors, then down the elevator, through the lobby, and miraculously, outside, into the open air and sunlight....... that whole time was charged with more emotion than I can even bear to open myself to.

And now here we are. We spend our days exploring, crawling, chatting, reading, singing... doing all the simple things babies this age are meant to. Maxwell and Shoghi, thriving. It gives me pause. What an incredible, enormous, humbling gift to be their mama.

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.

3-Week Vitals

Happy 3-Week birthday to my sweet, sweet boys!

Thanks to Grandma Dort for these cute sleepers!

Max, snuggling with mama for some kangaroo care
current weight: 5lbs, 10oz (birth weight: 3lbs, 15oz)

Shoghi seems to be trending towards taking all of his food by mouth!
Here he is without his gavage (feeding tube)
Current weight: 4lbs, 9oz (birth weight: 3lbs, 7oz)

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.

week one in photos

"O Thou by whose Name the sea of joy moveth and the fragrance of happiness is wafted. I ask Thee to show me from the wonders of Thy favor, that which shall brighten my eyes and shall gladden my heart. Verily, Thou art the Giver, the Generous."

Baha'u'llah

Happy One Week Birthday to my two sweet boys. You have melted my heart within me.

Some photos from Week One

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.