My throat tightens a little just thinking about it.

A preemie mom friend of mine posted a link on Facebook to a blog of a preemie mom this week.  The "Dear New NICU Mom" post was actually a post by another preemie mommy blogger. These Mommies are only about 3 years out from their NICU experience, and reading through their blogs, I can recall it all so very clearly. The absolute terror of RSV, the realization that they are all suffering PTSD, all of these things they blog about, or blogged about talking about? Been there, done that... but one paragraph in this post really stood out, and made me reflect on those NICU days, and where we are now.

"...And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either."

I will forever be grateful to Lindsay and Jamie, who in the middle of the most terrifying time in THEIR lives, took the time to reach out to Scott and Me.  I don't remember the words very well,  I was in a Mag induced haze, but I remember the kindness in their faces, I remember the words, if you have questions, anything we can do to help, and we've been there. It was that moment, that simple act, that changed our NICU stay, and what we took away from it.

Because of what Lindsay and Jamie did, (and what Keri and Craig did for to start it all) and how much it meant to me, I reached out to Nina and Todd, and they reached out to Saffron and Juan, and they reached out to Katy and Scott, and because of that simple act, a community was formed. A support system of people who understood, understand.

In my volunteer work with new NICU moms, I always suggest getting to know their neighbors.  I tell them how much it meant to me.  How six and a half years later, I am friends with those people, our kids are friends, we still celebrate birthdays and milestones, and life together.  I hope I stress enough just how important that connection is, was and will always be.

Reliving the Preemie Experience

In the last year I have been volunteering my time to speak with parents who are going through similar NICU stays.  Parents of gravely ill babies born way too early.  It has been rewarding and even sometimes really hard. 

More than six years after the premature birth of my boys, my very healthy and happy children, I can still be pulled back into the nightmare, the horror that is prematurity.

The families that I have worked with were wonderful.  They've all had that perfect mix of fight and fright.  Never too optimistic, never too down.  You have to be that way with the prospect of a prolonged NICU stay. It has been a great experience, and I really enjoy working with them, but they are essentially strangers, it is easier somehow.

In the last 30+ days I have been too close to prematurity again.

34 days ago, a friend, a former NICU friend, gave birth to her son, prematurely. In a country that admits to being 15 years behind the US in their neonatal medicine.  At 26 weeks.  I know 26 weeks so intimately. Her son, was only 1 pound 7 ounces.  Even more Micro than my Micros He has already had a brain bleed and NEC,  however on the positive side, he is sprinting, and his lungs seem to be doing so much better than my 26 weekers.  Everyday she posts an update on Facebook.  Everyday I hold my breath as I read it.  I know so well how quickly something can change.  NEC -- That scares me so much.  We escaped its wrath, but each time I read that they are increasing his feeds, or that his belly is a little distended, I cringe.  She is so positive, and strong, and guardedly optimistic.  In the first few days I would scream at the computer at all of her other friends congratulations, and positivity.  Only someone who has been through all the ups and downs can know how painful congratulations can be.

Just last week another preemie was born to a friend of the family.  27/6. Preeclampsia.  It all comes back so strongly. Every up and down. Every milestone.  First skin to skin. First feed. This boy is doing really well.  So far no major issues.  I am holding my breath, can you tell?

As much as I want to know what is happening with these babies, it is hard. I am trying to follow "casually". Maybe it is a protective wall. I worry about these friends.  Every day.  My heart aches for them. Every day. Their babies get stronger. Every day.

and maybe I do too.

We are so lucky

****Edited

I've written here numerous times about our friends, Dylan and Tyler, and their baby brother Colin. We are so lucky to have them in our lives. The boys have been "friends" since their very first days, side by side in the NICU.

We've weathered those first cold and flu seasons when terror struck every time someone had a sniffle. We've had to cancel many a play date, so we didn't infect each other. (The best friend a preemie mom can have is another preemie mom, we totally understand and are not offended by canceled plans. We'd all rather be safe than sorry!)

The boys ALWAYS have fun playing together, and Lindsay and I ALWAYS (although more so now days) enjoy chatting.

I can NEVER be in the presence of these four and now five boys without laughing, and smiling the day away. I can NEVER be in the presence of these children without marveling at how LUCKY we all are. Five babies that had such difficult starts, starts that defied the odds. Five boys who are walking (okay four), talking, BREATHING examples of LIFE.

ARUGH. I LOVE these kids!!!!!!

Dylan mugging for the camera.

Evan, Ryan and Tyler working on a co-op masterpiece.

Seriously, how can you not love these kids. How cute are they????

Being around these little miracles reminds me, brings into focus, clarifies, just how lucky we are.
And it also gives me hope and perspective when I hear from a friend in Ireland of his struggles with his newborn daughter.

Aoibheann is a term baby, born with some respiratory distress. She spent the first seven days in the NICU. John described some of the things they were going through, the oxygen, the tests, the inability to hold their baby, and snap, there I was back in the NICU. Immersed in the sights and sounds like it was yesterday. Feeling so many emotions and worry for my friend and his family. The NICU is a full sensory memory. You smell it, feel it, hear it, see it, just by closing your eyes. Those of us that have had extended stays will never be fully rid of that ability to remember.

I was overjoyed that Aoibheann and her family only had to spend seven days in hell, and when John posted that he was laying the couch with Aoibheann on his chest, I remembered that moment too. That peace, the contented feeling, the overwhelming joy. sigh.

Aoibheann was only at home for eleven days, she is now back in the hospital. They believe it is RSV. I've talked ad nauseam about the dangers of RSV to preemies, and how frightened we were when the boys were little that they would contract this common virus which can be fatal in children with respiratory issues. Needless to say, I am terrified for them.

Thank goodness they listened to their parental instincts and took her to the ER, even though her pediatrician said she would be fine. Thank goodness she seems to be improving. But they are on that roller coaster that we rode for five months. Weaning oxygen, increasing oxygen, doing better, doing worse, going home soon, staying longer. My heart is with them, I feel helpless for them, and I know how helpless they feel for their daughter.

I know how lucky we are...I hope beyond words that they will be too.

*******Aoibheann is home with her Mom, Dad and Sister.

32 Month Developmental Follow up Part One

Because the boys were born at 26 weeks, we have been closely followed by the Neuro-developmental follow up clinic. We are seen every 6 months to make sure the boys are on track in all the major groups--fine motor, gross motor, cognitive and language development. Preemies typically have delays in some or all of the major developmental areas and our boys were no exception. Most preemies are caught up by the time they are three.

Last Tuesday Ryan went in for his evaluation. His two hour evaluation. They warned us that this one would be long, so I scheduled the boys for separate appointments on separate days.

The test they use is a standardized test that measures the mental and motor skills of infants and toddlers. There are a number of specialized toys, puzzles and objects and the child is asked to perform various tasks.

Ryan did really well, really well. Not surprisingly, Ryan's language development jumped the scales. Six months ago Ryan was at the very bottom of the mean for his adjusted age, and today, he finds himself at the top for his actual age. Now WE knew his language has taken off in the last 6 months, but it is nice to see that some one else can see it too!

********************

Ryan has started waking up in the mornings dry. We've been putting him on the potty every morning and he is very happy to pee in the potty. He is also starting to tell me that he has to go pee. Sometimes that means he is going as we speak, or he has just gone, or usually once a day we make it to the potty and he goes. I guess that means we are making progress in this area? Oh dear...

********************

Yesterday I heard the boys talking about pepperoni and cheese. I asked them what they were doing, I was told quite emphatically, "we are playing Pizza Port". That's my boys!

Deja Vu all over again

....and in a bad way.

Friends of ours from our NICU days have been on the road to having another baby. They decided on a surrogate in hopes of not having another premature baby.

Yesterday, I got a call from Todd. Their baby girl was born at 26 weeks, 6 days. She weighs less than 1000 grams. (That's around 2 pounds)

This news has floored me. I felt like someone punched me in the gut. At the same time I feel my chest tightening and all the air in my lungs is being squeezed out of me with a force so strong I cannot even begin to describe it.

I can't imagine Todd and Nina, back at the NICU, back for another long, long stay, with another medically fragile baby. My heart is aching for them.

*************************

My heart, its been aching for many people lately. There seems to be a terrible amount of sadness in my circle of friends right now. Death, baby loss, marriages crumbled, children suffering, and now this.

All of this heartache, a painful reminder to appreciate everyday, even the toughest of the tough.

Reconnecting with old friends

One of our NICU friends ran into another mom we knew from our time in the NICU. They had basically dropped off the face of the earth after going home. There had been sightings, and we knew they had another baby, since they had another (short) NICU stay with the second baby.

I've often wondered about this mom. She gave birth to twins at 25 weeks. One twin survived, and the other did not. They had a long stay in the NICU too, and when they left, we hoped they would stay in touch. I often wondered how she did it. She didn't have time to grieve for her dead baby because she had another one fighting for his life. She had to muster up all of her positive energy to give to Tanner so he could fight to survive.

As a parent with a child that spent time in the NICU, I think you will forever wonder what happened to all of those babies you spent time with. You worry about them. Especially when you don't hear about how they are doing.

So, it was FANTASTIC to spend the morning seeing and playing with Tanner and his brother Peyton. Tanner is doing so well, he has some issues with eating, (sounded REALLY familiar) but developmentally, and physically, he's doing GREAT.

I didn't do a great job with the pictures, but, you try to get four toddlers in the same frame.
I forgot to post pictures with the apple picking post so here are a few just because.

Finally under one roof

Two years ago today. We brought Ryan home from his 152 day stay at Chez NICU. 152 days, 3,648 hours, 218,880 minutes, give or take. and our family was finally under one roof. Our own.

It was a long time coming, there were so many of those minutes where even imagining this day would come felt dangerous. Like we were tempting fate. But those same thoughts, of coming home, being a family, were what got us through all of those 152 days.

Those last few weeks were tough. One moment we'd be planning on coming home, and the next moment, Ryan would need to be bagged, and our homecoming would be postponed. When we finally got the okay we wondered had we waited long enough since his last "episode"?

"Aunt" Peggy was there on our last day. She got one more cuddle in with both boys...
Loaded us in the car...
and sent us on our way home...
Once home, my boys found their comfort zone...


My confidence was shaken, the very next day. On our way to the doctor's office. Literally two blocks from our house. Ryan's monitor went off. I looked in my rear view mirror and he was blue. Not just dusky, but blue verging on purple, verging on black. I honestly don't remember how I pulled the car over without causing a major accident, but I did. I hopped out and started trying to stimulate him, he did not respond. I was screaming at him. rubbing his chest. screaming at my mom to get the oxygen. I finally had the idea to loosen his car seat straps. I think I was going to try and get him out, or try to get my hands in there to some how make him breathe. Once the straps came loose, so did breath. He pinked up quickly. I however stayed pale for days.

Thankfully that was our only real "episode." Both boys continued to breathe regularly and the monitors were virtually silent.

Here's what Ryan's been saying:
Play trucks please
Play cars please
Play choo choo please
Car book please (anyone sense a theme?)
Gold bug book
Read please
po-po bear
ice water please
more grapes
tacos
oh no ri-ley

I think one of the greatest things I've seen between these boys happened the other day. I was busy trying to get dinner packed up, and Ryan really wanted me to play choo choo's, he kept asking and I kept explaining to him that I had to get dinner packed because we were going to leave in a few minutes. I then told him he had two choices. he could play choo, choo's by himself, or he could ask Evan to play with him. He turned around squatted down in front of Evan, and said to him. "play choo choo" he then grabbed him by the hand, pulled him up and into the other room to play choo choo's.

He's also had an accidental poop in the potty this week. We were getting ready for bath, he had a poop in his pants, and I thought there was more to come, so I put him on the potty. He sat there for a few moments, stood up, left me a present on the floor, and managed to get the rest into the potty. Yeaaa, Ryan!!!

Since coming home two years ago, Ryan has brought us more joy than I can ever express. He has a way about him, a quiet, wry smile. There is a glint in his eyes that tell me I have to be on my toes at all times with him. he is the sweetest most compassionate being I have ever met. He's determined, and persistent, and relentless. (I wonder where he gets that?) He is full of emotion, full of mischief, full of wonder.

And we are a house filled with love.

Last one home is a rotten egg.

Two years ago, we finally brought Evan home from the hospital. One Hundred and Forty Seven days after his extremely early arrival we were overjoyed to finally have him under our roof.

There was still trepidation. He was still on an apnea monitor, and we were given emergency oxygen. Was he really ready? Were we? There were mixed emotions. What about Ryan, poor baby, would he be okay, would he miss his brother?

We were going, no matter. "Aunt" Julie and "Aunt" Tina, walked us down to the car, and away we went.

(you can see me in the background, even as Julie is walking out of the NICU, I'm saying one last goodbye to Ryan, even though I'll be seeing him in the morning, I can barely leave)

Evan in his car seat, riding home, with a smile.

First steps into the house.

Dearly departed Samson, checking out the "thing" Mommy brought home..."hmmm, something tells me I'm not going to like this."

Is there anything better than a cuddle on the couch with Daddy?

It's hard to believe it's been two years. It feels like they've always been here. That my house has always looked like a cyclone hit. That I've always had their smiles first thing in the morning and the last thing at night to warm me and fill me with love.

On this anniversary I thought I'd list a few of Evan's sayings. These days there are many but these are my favorite:

Two funny guys
Pickle puss
Hi goose
Evan RyRy go
More Neigh
Hockey Puck
Good Job Ev-an
No more monkeys jumping on bed (as he's jumping on the sofa, and I am counting to three)


Two years bring on a lot of changes, thank goodness the NICU's and apnea monitors and oxygen are all behind us now. The worries over language development, gross motor and fine motor development are subsiding as each passing day brings (sometimes shocking) mastery of skills.

Two years of love and laughter filling our home because this guy finally decided to come home.

Two weddings and a NICU

Two years ago, we had an addition to our family. No, not a baby or a pet. If I'm being perfectly honest, this addition came into our lives many years earlier. October 5, 2002. That just so happens to be the date we had two more additions to our family. Wow, this is getting confusing.

Here's what happened: Back in October 2002, Shelley, Scott's sister, married Todd. Therefore, Todd and Cassie (Todd's Daughter) became a permanent part of our family, whether they liked it or not.

On that same day, Scott's brother, Eric, decided to bring a "date" to Shelley's wedding. Okay are all of your warning bells going off. Who brings just a "date" to his sister's wedding. Yeah, the entire family was a twitter. If it wasn't the upcoming nuptials being discussed, it was this mysterious "date" Eric was bringing.

To shorten the story by about 10,000 words. Mary came to Shelley's wedding, fit in perfectly. Did not miss a beat, on the dance floor, or keeping up with this sarcastic, crazy family. She survived the wedding, and the three week European vacation with the entire clan, we decided to keep her and she's been with us ever since. (can't shake the girl)

So, now back to TWO years ago today, Eric and Mary were married.

Two years ago, Ryan and Evan were still permanent residents of the Infant Special Care Center.

Two years ago, a sobbing Mother walked was dragged out of the Infant Special Care Center, to catch a plane to Oakland, to drive to picturesque Healdsburg, to participate in Maric's very special day. (oh, everyone in our family has combined names. Shelley, Todd and Madison= Shoddison. Scott and Janice = Scanice. I don't think we've come up with our name including the boys. Have I mentioned that this family is oddcute?)

I wouldn't have missed it for the world, but...as I sat there holding my babies, the thought of being away from them for more than a few hours, was killing me. You see, until this day, I had never gone a day with out seeing my boys. I'd been with them, EVERY. DAY. for four months. I made the trek to the hospital each and every day for four months. I sat by their beds, every day for four months. I KNEW they'd be safe. I'd made sure that our primary nurses were on duty for the weekend. We were going to be back Sunday morning. It was only one day.

In the world of the NICU, one day could be critical. In the NICU, one hour could be critical. You just never know. In one day a preemie can go from stable to critical, it changes that quickly. The only reason I could leave those boys, and go on plane, (where I'd be unreachable) was the knowledge that our primary nurses would be with them. They were the only people that knew those better than us. (Well, they didn't know them better, but they knew them and they have far more medical training than Scott or I, so really, they were safer with them than anywhere.) Funny, it still makes me sweat just a little to think about leaving them in the NICU alone.

It was really good for us to get away, to be with family, celebrating. The ceremony took place overlooking a vineyard, there was great food, dancing, laughter, and lots of love. The bride was gorgeous, the groom handsome. There was nary a dry eye in the place during the ceremony.

Scott and I spent a full day, breathing. Not focused on skin color, or numbers flashing on a monitor, or how many ML's someone ate. We were able to focus on the end game. We were able to recharge, relax and gear up for the home stretch.

Most importantly, we were there to share this with two very special people...
...and the boys were just fine.

Lil' grads and their Moms and Dads

On Saturday we attended our second Lil' Grad Picnic, sponsored by the NICU where the boys spent the first 5 months of their lives. This is really a wonderful event where the families of some of the sickest NICU babies come together to celebrate just how far we have come.

This year we were much more, um, interactive. Last year we were walking around, but very easily containable. This year, we were on the move. Ryan enjoyed the huge bouncy slide, Evan, preferred the hula hoops. Both boys loved the Am-ban, and the wooo-oooo-oooo. (Ambulance and Police Car)



Neither boy stood still for long, as we were leaving one of the nurses mentioned that she hadn't seen the boys in the same place all day, she wasn't kidding.

I think the only time we were together for more than, 30 seconds was when we settled down for lunch with our friends, (Lindsay, Jamie, Dylan and Tyler, Jen, Brian, Linus and Sadie) Yeah, look closely. That's three sets of ex-preemie twins and their parents, having a leisurely a peaceful lunch. Actually, it was really nice. The six kids allowed the six parents to have a conversation that lasted more than one minute at a time. (See how far we have come?) At this table alone we represent preemies born at 26, 27 and 29 weeks. Kids that have survived NEC, collapsed lungs, IVH's, infections, blood transfusions, eye surgeries and a list of many other things. Kids that were given slim chances of survival, and if they survived, well, there might be "other problems". If you met these kids on the street, you wouldn't know how sick they once were...how far we have come.

Together again, at last.

Okay, so I'm still 52 items short on my list of 100 for my 100th post, but...two years ago today, was a very special day.

Two years ago, my boys were reunited after sixty-eight days apart, they were finally co-bedded.

I remember the day so well. It was a special day for me too. My dear girlfriends were throwing me my postponed baby shower. It was a combined effort. I was supposed to have 3 showers, (I know! but there were lots of people REALLY excited about these babies) The first was to be in Sacramento, which I missed while I was in the hospital on bed rest. (sorry Shelley!) I attended it by speaker phone, and I enjoyed hours of video tape a few days later. After the early arrival of the boys, we postponed the other two showers until we were a little more confident that the boys would survive.

I went to the hospital early, because I certainly couldn't enjoy myself if I hadn't seen my boys, cuddled for a while and got pushed out of the NICU by my nurses, rushed home, changed, and enjoyed my day of being showered. The girls went all out. The house was decorated so cute, the food was very yummy, and there was wonderful company. Of course I spent the day talking about the boys, when we thought they might come home, etc. I was really overwhelmed with the love. (Thanks again for a great day, Maya, Suzanne, and Angie)

The party broke up, and Scott returned home. I can't remember exactly what he said, but it was something to the effect of "don't be upset" Alright, you NEVER say that to a Mom with babies in the NICU. My heart dropped. He quickly followed it up with the reason I might be a little upset. Our nurse Peggy had decided that this would be the day that the boys would be placed in the same bed. Can you believe that I missed it???? I still can't.

Peggy was so good about making sure things got done, even when people were a little nervous about it, she'd get right in there and say, what's the worst that could happen, or it can't hurt. I think she was going to be out for a couple of weeks and wanted to make sure they got co-bedded on her watch! It took a few minutes for them to adjust to another squiggly, wiggly thing in their bed, but once they realized that it was their womb mate, they both settled in and really started to thrive. Their events were fewer, they seemed calmer overall, and gosh it was just so darn cute to see them all bundled up together.

The bad news about co-bedding was that now we were only allowed two people bedside at a time instead of the four that we had gotten accustomed to, and on this weekend we had tons of people (all the Grandmas, Maya, you know, tons) in town who wanted to come to the NICU to see the boys. Our NICU had a strict policy that for each bed, you may have two visitors at a time, one of which must be a parent or guardian. When the boys were in separate beds, we had four visitor slots, three could be guests.

That was really the only negative. It was wonderful that the boys were finally well enough to be together, at last. This was the beginning of the long, and (what seemed to be) never ending homestretch. (is it possible for a homestretch to last two months?)

This is it, THE moment they were reunited.

Ryan mauling Evan.


Evan returning the love.

Happy Father's Day

These were taken on Saturday, but Father's Day looked pretty much the same. The boys have found the joy of the back yard sprinklers on a warm summer's day.

I'm not sure who had more fun, the boys or Scott spraying them down with the hose. This being Father's Day I thought I'd mention a few of the things that make Scott such a great Dad. You know I knew he'd be a great Dad, kids love him. We'd go out to eat and without fail there would be some little one, that would be fascinated with Scott. But watching him Father these boys, argh, makes me well up just thinking about it.

In the beginning, when we were caught between life and death. When we watched every breath holding our own, until we edged on blackouts, Scott was there. He read to these boys, he talked to them. He learned how to carefully change their tiny diapers, he learned how to wrap them and turn them over. As they got stronger, he learned how to give them baths, feed them, hold them and even play with them. He learned to stop watching the monitors and look at the color of those precious faces.

Once they came home, he learned a whole lot more about everything. He changed countless diapers, defrosted gallons of breast milk, fed babies in the middle of the night. He nearly killed me responding to one of the babies monitors beeps. (killed a little strong, but I certainly got a good hip check into the wall, got stepped on, and left to pick myself up in the dark)

He got up with Evan in the middle of the night until about two months ago, when he finally started sleeping through the night.

He plays with the boys, and lets them do things Mommy would NEVER let them do. (go down slides head first, ahem) He enjoys every moment with them.

He sings to them. This is significant because well, because I love to sing, I love to drive around singing at the top of my lungs. Scott not so much. He once told me that singing interferes with his ability to enjoy and appreciate the music. To me, singing only adds to this experience. So, Scott has learned a ton of songs just so he can sing to these music loving boys. I should note that our musical repertoire is a bit unconventional. There's not a lot of kids music in the mix. Usually its something by the Grateful Dead, or the Eagles, or Elton John, or Lyle Lovett, or the Beatles. I love that the boys have requests, it makes me laugh to hear them finish the lyrics to Rocky Raccoon.

There are oh so many reasons why Scott is a special Father, most importantly, he is just here for the boys, role modeling, teaching, and loving.

Happy Father's Day!

Thirty Four Days

It took Evan thirty four days to be stable enough for us to hold him. Two years ago, I had the ultimate, early Mother's Day gift, I held my little boy for the first time.



Peggy got me ready in the morning, "Today's the day, as long as he continues to do okay, you can hold him" I waited patiently for Scott to get to the hospital from work, with the camera, and I finally got to hold Evan.


It had been a rough few days, both boys were self extubating on a regular basis, on and off the breathing tube. My journal entries for the previous week all started with, phrases like:

"Evan we had to go back up on your vent today..."
"Holding your breath is not acceptable behavior..."
"Evan you are having a tough day...that shade of purple is not all that pretty on you."
"Ryan you are back to being puffy"
"Evan! you self extubated again!...You had no events from 4AM to 10:30 AM! That is a really long time" (it's funny how six and a half hours was an eternity, we were so happy that he went six and a half hours without setting off his alarms. Or six and a half hours breathing like a normal baby)

With all the ups and downs of the previous week, getting the chance to hold Evan was nothing short of a miracle. I even got a few minutes with him off his NSMIV (Nasal Synchronous Intermittent Mandatory Ventilation: when a ventilator delivers preset breaths in coordination with the sponteaneous breaths a patient is taking.) where I could see his whole face.

"Evan, it was so wonderful to hold you. Your heart rate had been high all day, but once you were in my arms it came down from the 190's to the 160's. Is there any better place for you than in Mommy's arms?"

It was so amazing to finally hold Evan. I honestly doubted it would ever happen. Can you imagine not holding your newborn, for more than a month? I worried that he wouldn't bond with me. I worried that when I held his brother, he was sad. That he felt I loved him less because I never held him. I felt that I was neglecting him, not providing the nurturing he needed to get well. It was such a terrible position to be in. Every time he was touched, he held his breath, but was the lack of my touch causing him to be slow to recover? Do I listen to the doctors, nurses, respiratory therapists and just wait, or do I push to hold my baby and possibly do more harm than good. All I could do was be there. After a cuddle with Ryan, I'd spend as much, if not more time with Evan to "make up" for it. I think that is one of the things all twin mommies go through. Equality.

Finally, I could make up some ground on the equality issue. After that first cuddle, it became easier and easier to hold Evan. It's almost as if everyone was waiting for the first time, not wanting to be the one, just in case it went badly. After the first time went so well, we all stopped holding our collective breath, and holding the boys became a daily event. Evan always was calmer and breathed easier when he was on my chest. He slept deeply and contentedly. Ryan too. When the boys were having a bad day, nothing made it turn around like a nice long cuddle with Mommy or Daddy.

Team Takade

The first few weeks we were in the NICU, we had a variety of nurses, day and night. A couple of those nurses we had multiple times. The nursing staff works 4 of 7 days (12 hour shifts) and typically they have the same assignment for the days they are on. Our NICU supports Primary Care Nursing, which provides continuity of care. These babies are so sick, and the signs that they are getting sicker are so subtle, it is imperative that the people caring for your baby (ies), really know them. Until now, (two years ago) we were subject to the luck of the draw, until we asked and finalized our "Team". Little did I know that two years later this "Team" would still be a huge part of our lives.

We chose 3 primary care day nurses and 2 night nurses. Looking back making those choices made all the difference in the world. These five women saved the lives of our babies more times than they could have counted. Our boys turned shades of purple and black more vibrant than any of these women could have imagined. Our boys responded to them in ways I only realized when they were all on vacation and we had 'other' nurses.

Our team consisted of very experienced NICU nurses. Very active nurses in the NICU. Very strong nurses. (They'd have to be to endure 5 months with us!)

I think we were drawn to each of them instinctively. Each one very different, very opinionated, very smart, very open to having parents present, very willing to teach those involved parents to do as much care as possible. Each one brave and fierce in their care of babies.

I look back and think of how each of our nurses touched (and continue to touch) our lives.

Cindy: Encouraged holding Ryan for the first time, even though many thought he wouldn't tolerate it. Always encouraged us to hold the boys, even when we weren't sure either. Our first bath was with Cindy. Cindy was never afraid to do anything. "let's see how long he'll last on just blow by" (Where the oxygen mask sits near the baby's face with out pressure or a direct tube in to the nostrils or lungs) We'd talk sports and reality TV to pass the endless hours.

Julie: Always made me laugh with a funny card from the boys, or a sign reminding me to take a break. Julie called the boys her boyfriends, and had affectionate nicknames for them like booger and trouble. She always diffused a tense situation with humor, kept me laughing even when my baby was blue. Coined my favorite phrase, I still use today "When Momma ain't happy, ain't nobody happy". We'd talk TV, celebrity hook-ups and break-ups.

Peggy: The most motherly of the bunch. She would always make sure I took care of myself, she'd bring me fresh veggies from her garden, zucchini bread, and even the occasional lunch. She really tried to make breastfeeding work for us. She was the first one to be brave enough to let us hold Evan for the first time, and she pushed for Co-bedding before even though no one thought they were ready. She switched shifts and came in extra early, just to be there with Evan for his first Eye surgery. She got him extubated very soon after that surgery. We'd talk parenting philosophy, Emma and Luke and our go home plan. (even when it seemed like we'd never make it home)

Virginia: Took such good care of our boys at night. She made sure we were informed on the nights events. Kept Scott company during his evening visits. I think Virginia was around for a few of the self-extubating episodes. The boys liked to keep her on her toes.

Kerri: Traveler, whom I did not get to know well. She too took great care of the boys at night. They always seemed to have good nights with Kerri. But sadly Kerri was gone before we were.

All of these women were advocates for our boys, they went tooth to tooth with the Doctors over care. They were the ones with them from day one, (give or take) until we left five months later. They pushed to try things when it could do no harm. They saved their lives EVERY DAY. (so did a lot of other nurses, I joked that everyone in the place had saved the boys lives at least once, and I really wasn't that far off) They explained what was going on when we felt in the dark. They educated us, comforted us, they pushed us to rest, take time away from the NICU. (not that we listened) They were the ones that I trusted above all others with my precious babies. It was always easier for me to leave when one of our primaries was on duty. I always rested a little easier (and so did the boys) with them. They never let us down. They put up with our constant presence. Our need to be bedside all day and half the night. At the end, they put up with my crazies. My insane need to get those boys home, control which nurses took care of them day and night, my need to never come back to the NICU again.

I love all of these women. Today I still think about them ALL. THE. TIME. I think about how fortunate that they are in our lives. I love that they all still know the boys. If I have anything to say about it, they will always know what is happening with Ryan and Evan. After all, they are some of the most important people ever to cross paths with our boys. When they have triumphs, they are the triumphs of Team Takade.

I know I've said "Thank You", and those words still seem so feeble. How do you thank the people that kept your children ALIVE? I doubt there will be a time that I look at my boys and not think about all of the people that touched them, kept them safe, kept them in this world with us. I know I will never forget these five very special women of "Team Takade".

With out these women...none of us would have come out the other side of our NICU nightmare.

The many faces of bravery

My mother in law was here for a few days catching up with the boys, (post on that coming up) we were talking, and she called Scott and Me brave. That got me thinking, a lot. In some ways I guess we have been brave. The last few years have been difficult to say the least, but I never would have used the word brave to describe us.

Brave--As defined by the Merriam-Webster online dictionary is: having or showing courage.

Hmm, okay, I guess we have shown a bit of courage, we have endured a lot. Five months in the NICU, five months of pure torture wondering everyday if the boys would ever be well enough to come home. But through of all of that, we came home with the prize. We have two healthy toddlers providing us with endless hours of joy.

I'm reminded that there are so many others that are not as lucky. There are the grieving Mom's I know only through their blogs. I'm not sure why I am drawn to their sorrow, but I am. Maybe it helps to remind me, on those tough days that I have to be thankful for two healthy boys, that life could be so different. Endure the whining, or the emerging tantrums, endure the battles at mealtimes, because we could have been forced to endure the worst tragedy a parent could experience. A simple twist of fate and one or both boys could have slipped through our fingers, never to take up residence in our home, always lingering in our hearts.

During our recent trip to the River, we spent some time with our friends Katherine and Paul and their two children, Naomi and Ian. Katherine and Paul had three children, another boy Richard born between Naomi and Ian. Born, brought home, and then suddenly taken ill. He lived for five weeks. His parents sat vigil at his bedside, and cared for their daughter too young to really understand all the commotion in their otherwise idyllic home. After losing their infant son to a virus that attacked his heart and kidneys, watching him get weaker and weaker, and ultimately leave this world, they had to go home without their son. They had to mourn and parent. I cannot imagine. I cannot fathom.

They got out of bed each day, loved their daughter, with a giant hole in their hearts. Over time the hole is getting smaller, the wound not quite as raw. They were able to talk about Richard without losing it. They talked about how it is still hard. How when all the families are together, there's someone missing. The talked about how the emptiness is still present. What I marvel at is while experiencing the ultimate in grief, Katherine and Paul still managed to raise a vibrant, happy little girl. And they went on to have another child. I think I would have been paralyzed by fear. Fear that it could happen again. Knowing that, I wouldn't have it in me to go through it again. (Sometimes I think of another child, but the NICU looms over me like a cartoon anvil, ready to fall on my head.)

Yes, surviving the NICU, did require bravery.

Surviving the loss of your child, requires bravery I cannot even begin to touch.

Hard to Handle

***This should have been posted yesterday, the two year anniversary but, who has time to look at a calender?

My Ryan was 21 days old before I was able to hold him. TWENTY-ONE DAYS I sat and watched him breathe, or not as the case may be, watched him struggle for life. Watched him have surgery to close his PDA. Watched him puff up like the Stay Puff Marshmallow man after surgery. Watched him endure countless procedures, ventilators, and blood transfusions. Just watched him. Watched other moms hold, nurse, kangaroo care their babies.

For Twenty-one days I did everything I could to touch my babies with out causing them to stop breathing, I learned how to change their diapers, hold them down for blood draws, or procedures, anything to touch them and assure them I was there. For twenty-one days, they were just to unstable to hold.

We read in our Preemie book that babies sense of smell was very powerful, and they could certainly smell their Mothers. The book suggested wearing a washcloth next to your skin to let your scent penetrate the fabric, placing it in the incubator for the preemie to smell your presence. We did this. We also cut up some receiving blankets because our well intending nurses would clean out the boys isolettes and get sometimes get rid of the said washcloths.

It was torture. I wanted so desperately to hold and cuddle my children. But obviously, keeping them breathing was far more important than what I wanted.

We finally got our moment. Our Nurse Cindy was brave and decided that this was going to be the day. I don't think everyone in the NICU had her confidence that this was the right time to try.

As we made the transfer from the bed to my arms. Ryan had a major desaturation in his oxygen levels and the attempt was almost aborted.



On the left, is the Respiratory Therapist, and Nurse Cindy is on the right, what you can't see is the Attending Doctor, Evan's Nurse, the Fellow, the Resident all standing nearby, watching, waiting, hoping they did not have to jump in a rescue Ryan.



We made the transfer, and I carefully held Ryan. After he settled in, his O2 levels stabilized, and the "team" breathed a little easier too.





Ryan clung to my finger and sucked contentedly on his breathing tube for a half an hour. My joy in finally getting to hold this precious little thing was indescribable, and only dampened by poor Evan lying alone in his isolette. (Where he would stay for another two weeks)

Two years, 55 Adults, and 13 toddlers...what was I thinking?

Yesterday we held the boys birthday bash. Are we exhausted today. The boys were so worn out, they slept in until 7:30 this morning. Generally wake up around here is between 6:00 and 6:30, so that extra hour was like finding a million bucks. Ah yes, and there was nary a peep from either boy all night. (now that's a gift) Also, thank goodness my Mom was here, she did so much work helping us prep and clean up.

I once loved entertaining, and I actually still do but it is considerably more difficult these days. There is nothing more fun than having a bunch of your friends over to eat, drink and be merry. Be it store bought or long slaved in a hot kitchen, good friends and good conversation are the key components. However post children good conversation consists of something more like this:


"So, what have you been up to?"
"Evan, noooo."
"Wow, how exciting, wha....Ryan, we don't eat trash"
"When did you...Evan, we don't stand on the slide"
"Does someone have poop in their pants?"

and good food, well, is usually eaten so fast that it's hard to tell the difference between good, and horse meat.


We had 55 adults and kids, plus 11 toddlers (not including our two) under 3 here today. I'm not sure what I was thinking except that there were a lot of people that a)hadn't seen the boys, EVER. or b) hadn't seen the boys in a long while and/or c) were our good friends. Those three things make for a large party.


I decided on a bubble theme so we had lots of bubble wands, plus we set up our sand table, water table and the swing set we got for the boys birthday. Oh, and we made sure all of our ride on outdoor toys were available. (cars, slides, airplanes) There were lots of other things, you know, food, cake, drinks, etc. The important thing is the boys had a BLAST, we got to see 65 of our closest friends and relatives, and we all survived!

I have to say that there were large chunks of time that I had NO IDEA where my kids were. With 55 adults around, I suppose that isn't a huge problem. If someone had started climbing our rocks, well, I'm sure there would have been an adult or two that stopped them, right? But because I had these lapses in parenting, I was able to have some nearly complete conversations. Wow how nice it was. Yes, I was distracted by the other 64 or so guests, making sure that the food stayed restocked, and occasionally grabbing one of the other 11 kids out of the grasp of danger, but really this was a great way to get some adult conversation. Now I know, a 5 to 1 ratio should be fine.


Many of our friends and relatives noted how well behaved all of the kids were. They seemed down right shocked that there were no fights or tantrums. I wasn't. We have great friends with great kids. The parents were all there to step in before anything got out of hand, even if I wasn't!


There was one moment when I realized I could only see Evan. I got a wee bit panicked. I shouted "Has anyone seen Ryan?" and I got a lot of No's. Then all of a sudden he toddled out from behind a table responding to my call. He had playdough in his hand, a grin on his face, and he greeted me with a big "HIIII!" Whew.


I was shocked (and very proud) at how independent the boys were. Evan has been having some issues with clingy-ness and so I thought he might be glued to one of us during the whole occasion, but NOOOO. These boys were happy as two pigs in mud. Running around the yard and house with no restrictions. I'd get drive-by hugs, or smiles, and then they were off again. Playing with this or that, talking to one of their admirers or just being. The only time they got a bit clingy, was at the very end of the night, which is to be expected. The distractions were fewer, they were beyond tired, and it had been a Long, Long day.



Tobin LOVES Cake. It's his favorite thing.
Dad (Jamie) and Dylan (with chocolate cupcake face) Tyler (with identical chocolate cupcake face) with Mom (Lindsey)

(Gosh, I hope I got those right, I'm usually better at telling the boys apart, but the chocolate, it's distracting me!)

The Birthday Boys enjoying some cupcakes of their own

Cousin Madison, and Auntie Shelley (along with Uncle Todd, and Cousin Cassie) came down to help us celebrate Ryan walking Philip and buddy Tobin out, thanking them for coming, and hoping they'll come again soon

I didn't get pictures of all of our friends, I hope others who took pictures will pass them along, please (smile), but one of the most remarkable things about this group of kids is of the 13 toddlers, 7 had prolonged stays in the NICU with us, (okay none as long as us, but really, how many babies stayed as long as us?) and one more had a very short stay. It is a true testament to the parents of these kids (and the wonderful care we received in the NICU), most of whom were so terribly sick, that they are all thriving, energetic, bright lights in our lives. When you look at the statistics for preemies, and then you look at our children, all I can say is wow. I'm so proud to call all of you fellow alums of the NICU. As for the other 5 kids, well, you know, you're pretty special too.

Thanks to everyone who came out to help us celebrate.

Those are fighting words

The days that followed the birth of the boys are a blur. A few things are forever etched in my mind, and even two full years later are as raw as a good sashimi.

Dr. J. I will never forget his name, or his face, or the words he spoke as he came into my room. "Your sons are gravely ill. In all my years in neonatology I've rarely seen babies this sick. You have to be prepared. You should discuss how far you want to take any lifesaving measures."


I don't know how long Scott and I held each other and sobbed, it felt like forever. Those achingly deep sobs that come from your soul. There had been only one other time in my life that I felt such sorrow, the night my father died. In many ways the sadness was the same, but in many others oh so different. How could it be that these precious babies could leave us before we even really got to know them? How could it be that these precious babies that we wanted, and tried so hard for, might not ever come home with us? How could this easy and glorious pregnancy have ended so abruptly and possibly so tragically?

I don't know how we pulled ourselves together, but we did. I remember saying, "I need to be with my babies NOW!" I remember thinking, "I have to be positive, I have to bring good,
healing positive energy to these babies, they NEED ME. I am their Mommy and I can help them. I can fix this."

I remember us making many, many trips from our room on the 7th floor, down to the NICU. I remember the feeling of complete helplessness. I remember trying desperately to memorize every thing about their faces. I remember telling each of them how special they were. How much we loved them. How much we needed them. How their Mommy and Daddy fought very hard to bring them into this world, and now, it was their turn, they HAD to fight to stay here with us. I remember leaving them and being so frightened that if I left, I might come back, and they might not be there. Every time I walked through those NICU doors, I held my breath. I'd peer around the corner to see if the boys were still there, and how many people were around their incubators.

Those first days were so, so emotionally, physically and psychologically draining. Scott and I never had THAT conversation. I think I asked him once, what are we going to do? (in that totally non-specific, I don't really want an answer kind of way) and his response was, we'll just cross that bridge if we have to.

I saw Dr. J, many, many more times in the months to come. He is a wonderful, kind doctor. As the boys got better, and closer to coming home with us, I'd see Dr. J, I'd smile, he's say something about how wonderful the boys were doing. I couldn't help look in his eyes and relive those few moments when he suggested that we consider losing hope.

It's a good thing that in our family, we don't give up with out a fight.