When breastfeeding can't come naturally - World Breastfeeding Week

Like many mothers of premature babies I had the odds stacked against me.  Producing breastmilk would be no easy task but I was told it was of critical importance to the health of my baby who weighed about as much as a bottle of coke.

I was only 25 weeks into my pregnancy. My daughter was not ready to be born and my body was not ready to produce breastmilk. 

My body was in shock.  4+ weeks of bedrest, a traumatic C-section delivery, and some serious internal hemorrhaging meant that my body had other things to tend to.

I had to establish a supply with a pump.  Every 2-3 hours, 24 hours a day.  

Odds meant nothing to me though.  We had already defied some odds and succumb to others.  When I realized that providing breastmilk to Virginia was literally the only thing I could do for her for the foreseeable future, it became my most important job.   An immensely tiring and painful job.

The monotony of assembling the cups, tubes, and plugs, followed by pumping a few drops, labeling bottles with time and date, cleaning said parts, and putting everything away was a far cry from the natural and instinctual experience that I had expected through the breastfeeding process.  Nothing about pregnancy and motherhood at that point was what I expected, but the difference was that by providing breastmilk for Virginia I was providing her with the only natural thing left.  

There were many moments where I doubted my ability to continue to pump.  Clogged ducts, low supply, and stress all made me doubt whether I could continue the 7-8 time a day ritual.  Thankfully I had a wonderfully supportive husband, some amazing nurses and lactation consultants, and a beautiful growing girl to keep me going.  

Then we got lucky.  Virginia turned out to be terrible at handling a bottle.  Like, really really bad. And scary.  She choked, she desated, she turned blue, and she passed out.  But she did none of that when we tried nursing.  It was sort of shocking to everyone, including me and was just what I needed to keep going.  And just what she needed in order to learn how to eat orally.  

For a full year both Virginia and I got to experience the most natural thing for us as mother and baby.  It healed us and allowed us to bond.  Breastfeeding ultimately went beyond the essential nutrition and antibodies that were so essential to her health while she was so very tiny and sick.  She gave back to me just what I gave to her in those early days ... hope and healing.

the results of several months of hard work.

Mom Confessions

I trick Virginia into getting out of the house by telling her that I see our neighbors cat.  

Sometimes I just smile and nod when I can't hear/understand Virginia. 

I have zero desire to potty train her.  And she needs to be potty trained for preschool in September.

Breakfast is still painfully slow.  If I am in a rush or just can't handle the morning torture we go to dunkin donuts.  Somehow a donut get eaten without 4893572 distractions and I make it to work on time. 

God bless ipads and elmos world.  

God bless Daniel Tiger too.

God please spare us of Caillou.

Virginia can count to 10 in spanish and I cant.  

She now knows when I skip pages in books.  And calls me out on it. 

Virginia still sleeps in a sleepsack.  Yes she is too big for them.  Yes I panicked when I realized that she could unzipper them herself.  My plan for keeping her in her crib until she is 14 is foiled.   

Now that Virginia is forward facing in her car seat she joyfully calls out things that she sees.  Sadly her most common notations are Dunkin Donuts, the pizza place, shake shack and chipotle.  She also panics if I drive in the direction of daycare on a "home" day.  

I had Ginny "help" me garden a few weeks ago.  In a span of minutes she was climbing the rose lattice and then brought me some dog poop.  lovely.  

Virginia - Kure Beach, July 2014

back at it and life lately

I used to wonder what happened to all the preemie blogs, as many seem to disappear when the kids become toddlers. 

..that kid must have "caught up"

..they had another baby

..they've moved on

Truth is, we are here at preemie toddlerhood and none of that is true for us.  We have just settled into our normal and writing is no longer such an essential part of the healing process.  It truly once was and selfishly that is why I wrote so consistently on this blog for so long.  We are not necessarily busier and prematurity is no less significant in our lives, but I have began to prioritize other things.  

I miss this though.  I miss sharing our amazing little lady.  I miss thinking and worrying outloud.  I miss this community.  

For now, I am just going to share some photos and anecdotes about life lately, but Ill be back soon with some new thoughts and a few projects :)

We are off on an airplane tomorrow for some much needed beach time.

newest virginia-isms:

"beep beep, ssscuse me cars"- anytime we are at a red light

"where my sunglasses?"

"gimeee that" & "I hold it"

latest favorites:

chipotle

the beach

Daddy

water table & the hose

helping cook

ipad

Happy Father's Day

Wow, what an amazing journey (cliché’s much?).  I’m not sure I would have believed on my 1^st Father’s Day that my 3^rd would be as cranky and tiring as it was for both of us. It started with a 3 hour nap (that I wished I partook in) at 11:30 and ended at the beach and coming home letting her get as wet as possible before dinner.  Alyssa also had her saying “Happy Father’s Day” all day, that sometimes would break her into signing a “Happy Birthday” rendition of “Happy Father’s Day.”

I remember people saying it the first time and being like, you don’t know.  Now, I’m realizing that I do know and understand why people always say this.  It’s a badge but really a way to connect with other men knowing how little they have to do with the parenting and how their loving wife ‘guides’ (I know there are more female readers than males, so I’ll stay away from any other verb) them through the process.  While I was exhausted (and seriously that doesn't hold a candle to what Alyssa does every week), knowing where we've been, I just started laughing when she went to bed.

At this point, Virginia is best outside or at the ‘beeech.’  She boxes us out of any useful activity (cleaning, cooking, etc) with the skill of Charles Barkley and a sensible, ‘exxxcusse me.’   Her tastes are all over the map, cheerios from Stew Leonard’s are now her favorite for breakfast, just hold on for an hour long session.  She does eat as long as it’s Dunkin Donuts.  I’m not sure if eats fast because we take her to the Bridgeport location (because the coffee and donuts are cheaper) or the crack they put in them so kids love them.

I do appreciate that she calls our room, Daddy’s room.  I did not find funny when I was in the car the other day and she said she wanted to go back to Mommy’s house (don’t worry we didn't get a divorce).  When asked were Mommy sleeps, its Daddy’s room, in Mommy’s house.  I swear she’s already caught on.

She’s unfortunately obsessed with her iPad.  It’s her go to when she’s ‘bored,’ we've set ourselves up for this failure.  We've had a busy few months travelling and it’s the go to distraction in the car, I guess we asked for it.  Tuesday we get our cable back, so maybe this is the right approach so I don’t have to share my huge 32” screen living room TV with Caillou.

Also, it’s finally hitting me that I’m not going back to school any time soon, thank god.  It’s great realizing some of the little things that I've missed, especially those trips to Chipotle.  You would think Virginia was going to the Four Seasons, if she only knew.  I also can no longer get away with, I have homework and I won’t be able to get to painting the porch.

So this fulfills my yearly post, no worries to regular readers, I won’t be taking over the blog and talking to you about the nuances of the 3-4 defense and why the Redskins really need to go back to the 4-3.

This would have been more appropriate yesterday but too bad.

To all the father’s out there, BobBob, Shawn, Pete, Damian and all of my friends from college that now have kids, Happy Father’s Day, a day late. 

To my father, Happy Father’s Day, you've been an amazing inspiration and I hope I can do half the job you were able to for our family.

Lastly, thanks to Alyssa, it’s always been trying and fun; I wouldn't be able to do it without you.  Really Father’s day isn't so much for me but for the whole family, although I do love the fact that anything stupid I do can just be chalked up to Father’s Day.

P.S. I have no clue how I remembered the password for the account but remember this Virginia when you don’t think your Dad is snooping at your e-mail, Facebook or whatever other weird social media platform that will be available to you.

March For Babies Wrap Up

Spoiler Alert.... It was another hugely successful year!!

In total we raised just over $12,000 which put us up and over $30,000 since 2012.  We are so incredibly thankful for all of our supporters.  Whether you shared our story, or donated, or walked with us, or simply cheered us on.  We are grateful for each and everyone of you.  Please know that you are making a difference in the fight against prematurity and birth defects.

We do what we do because another family raised these funds and raised awareness for us.  We are keenly aware that our outcome could have been very different and most definitely would have been different without the research and treatments that were funded by the March of Dimes long before we got involved.

This year:

We had over 70 walkers at 3 different walks.Our youngest "walkers" were 4 weeks old and our oldest was 80.
We had 12 two year old walkers.
We had hundreds and hundreds of donations ranging from $2 to $250.

We had 50 entries in our March Madness bracket challenge. 

We collected nearly $1000 at shake shack (and ate a few burgers too!)

We will be back in 2015 and hope that you will join us!  

from the tiniest acorn grows the mighty oak

Last year there was an incredible video that went viral in the prematurity community and beyond.  Nearly 7 minutes of the beautiful and painful story of little Ward Miles captured the essence of the world of the NICU.  Perhaps the most poignant is the first 2 minutes.  There are no words and no music, simply the gentle hum of oxygen that percolates through all NICUs and the beautiful choreography of a mother getting to hold her precious tiny son for the first time.  It is a moment perfectly captured and a moment that all of us that have spent time in the NICU can relate to.  Whether it took a few hours to hold your baby for the first time or many weeks, the moment that you are able to embrace and reconnect with your ill child is one of immense emotions.  The raw emotions of that moment are typically at a time where outcomes, good or bad, are completely unknown.  The 'realness' of these moments in the Miles' video are why it was shared over and over again.  It is why I shared it with my family and friends- for the first time I was able to convey the reality of the journey despite it not being my own.  

The video goes on to capture those unexplainable moments, those moments that previously you would only understand if you stepped behind the sacred doors of the NICU.  The twitchiness of a premature baby due to their immature immune system, the bags of TPN, The cheekiness of a baby who has finally hit 2.5ish pounds, the look of a mom peeking through the plastic walls of the isolette, and finally the ritual of Lindsay tucking in a more alert baby Ward before saying goodnight.  Another night for her to head home without her baby.  

If you haven't watched it, you need to.  If you are struggling with  helping friends and family understand what you are going or have gone through, share this with them.  http://vimeo.com/78393869

The Miles family is now using their reach to support Graham's Foundation, an organization that has touched and guided so many of us from the prematurity community.  Click here to see an update from the them and learn all about the amazing tshirt/sweatshirt campaign that they have launched. 

Please consider supporting Graham's Foundation by purchasing an awesome tshirt or sweatshirt at  http://www.iheartgarments.com/campaign/benjamin-miller-graham-foundation .  

"from the tiniest acorn grows the mighty oak"  Ain't that the truth!  

This Club - Parents of Preemies Day Post

This Club

So you are a member too?

I know you never wanted to join.  You were probably devastated when you joined us.  You had no choice, no opt out for membership, no unsubscribe. 

There are no member cards or secret hand shakes, only our own language and abbreviations that immediately bind us as members.  PDA, PIP, PEEP, CPAP, NEC, BPD, TPN, and ROP all roll off your tongue. Just saying the letters may trigger PTSD.  You can count in cc's and can easily convert grams to ounces.  You have willfully pleaded for O sats to go up, heart pressures to go down and blood gases to stabilize.  

You have had a crash course in neonatology and semesters in cardiology, pulmonology, nephrology, gastroenterology and early intervention.  This is knowledge that you never knew you would need, but have embraced it in order to be a better advocate for your child. 

You know simultaneous joy and heartbreak.  You have felt bitter and angry.  You know that unique torture of leaving your child each night.  You know the immense core shaking fear of watching your child straddle the line between life and death.  

Your child may have "caught up."  Your child may never "catch up." Or you may still be waiting for the other shoe to drop.  

Like it or not you are a member of this club.  

As a member you are strong, you are mighty, you are resilient, you are your child's voice, you are their best advocate.  You are forever changed.  

For one day relinquish the fear and guilt.  For (at least) one day celebrate you.  Celebrate the tremendous person that you have become and the tremendous person that has made you who you have become.  Be proud of yourself -  the caregiver, the pseudo MD, the advocate, the home nurse, the expert, the short order cook, and most of all the parent to an amazing preemie.  

Please celebrate your membership in this club that you never wanted to join.

Wishing you a Happy Parents of Preemies Day on May 4th and every day.  

Please support Parents of Preemies Day, a worldwide day of awareness produced by Graham's Foundation. Parents of Preemies Day recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Each year, 13 million babies are born prematurely across the globe and though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads.Here are just some of the ways you can celebrate Parents of Preemie's Day, whether you're a preemie parent or someone who cares about a family with a preemie: 

• Check  http://parentsofpreemiesday.org/events.html to find out if there is an event happening in your area and if so, register. May 4th is going to be a great time!

• Share your family's story on the 

Parents of Preemies Day Facebook page.

• Connect with other parents of preemies at the next #ParentsofPreemiesDay Twitter chat! Jump into the conversation using hashtag #ParentsofPreemiesDay to talk about how moms and dads can celebrate being parents of preemies.

• Bloggers, visit the 

Parents of Preemies Day website and grab a badge for your sidebar – then create a Parents of Preemies Day post to tell the world why you're proud to be a preemie mom or dad. Email a link to your post to christa @ grahamsfoundation.org and we'll post it on the website!

• Visit the 

Parents of Preemies Day website for ideas about what you can do to support moms and dads of preemies.