Full Term

Life with a full term baby is so SO different.  I am not balancing feeding schedules and apnea monitors.  I do not have to lie awake at night, imagining the beeping of the alarm to signify they've stopped breathing.   I've never watched Hannah struggle to catch her breath, never stood by helpless as she turned blue, never had to teach her to eat.  She came out huge and round, ready to go.  She came out crying, ate as soon as I was stitched up, and had these beautiful full cheeks.

And yet, she is growing up before my very eyes.  Each day, she is SO much bigger than the day before.  She is developing so fast - in growth and what she is able to accomplish.  She knows nothing of the battle to overcome the way Warren and Dean did.  She was born knowing so much, possessing so much.  Oh, how I would have taken it all for granted were it not for my 2 little miracles sleeping upstairs.  I wouldn't have given it a second thought - the ease at which she accomplishes all these "normal" milestones, eating and sleeping and playing exactly like she is supposed to.

Our weeks with W&D are now filled with 6 therapy appointments, progress notes, and goals to achieve.  Two and a half years later, they still have to work for it.  But, you know what?  They will be better because of that.  They will be stronger.  They will understand work ethic and persistence from a young age.  Life with preemies hasn't been easy, from our end or theirs.  But we are all so much different, so much stronger, because of their journey.  As I think back on my pregnancy with the boys, as I continue to struggle with guilt and pain at not providing more for them, I have to remind myself that God is still bigger.  His plan is STILL better than mine, whether I understand that at this exact moment in time or not.  It's a constant struggle for me, that letting go and trusting.  Even if it's simply letting go and trusting with what has already happened.

I love Hannah immeasurably.  And life with just Hannah would have been so carefree and easy.  She's such a blessing, a joy, to raise.  Even in the wee hours of the morning, when she smiles up at me, I'm filled with such love.  But who I am, the mother I have become, is all shaped by years of trials.  Of saying goodbye to Reagan, of standing by unable to do anything but pray and wait and trust with the boys, of months in the NICU.  I watch Hannah as she is growing up so very fast, trying to not take a second of that time for granted, knowing that tomorrow is never promised but desperately trying to not live a life of fear.  If I had never experienced difficulty, loss, sorrow, trials and struggle with our first 3 children, I would never have known what a blessing life truly is.  I might begrudge those 3am wakings, the crying and fussing in the evening.  But God has taught me how precious life is, how precious my children are, and how short time on earth can really be.  It's a lesson I wish I didn't understand, and yet I am grateful, because it has given me a greater depth of love.

End of Isolation

Our second season of isolation is officially coming to a close.  No longer will I have to be confined to my house with my children.  I can run errands like a regular person.  I can go to the grocery store to pick up that one ingredient I am missing rather than begging off neighbors or waiting for Andrew to come home.  And, here's the kicker, my kiddos can play with other children.  Gasp.  As a mom of micro preemies, all I think of when I see another kid is the germs.  Their little noses are constantly running, and even now someone always has a cold.  I know Warren and Dean will eventually face their first cold, it is inevitable, but I shudder to think about their little lungs.  I have flashbacks to their time in the NICU, watching them fight and struggle to breathe.  I cannot fathom the fear of hearing the rattles in their lungs, watching them struggle and fight for breath all over again, hearing them cry out in pain.  Or worse yet, not hearing them crying out as they are too fatigued from fighting.  Here's the thing...I don't know if any of that will be true.  They might be strong enough to fight off a cold like any other kid, their lungs and the scarring may have healed enough to handle it just fine...no extra meds, no trips to the ER, no hospitalizations.  We just don't know.  I just don't want to know.  But I do know this, I am going to have to let go.  Just a little bit initially, but eventually completely as they head off to preschool.  Eventually.

Until then, I am going to slowly start entering society again.  Maybe schedule their very first play date.  Maybe not sanitize them immediately if they touch something some other kid may have touched at some point in history.  We'll take it one step at a time.  Starting with a trip to the park and dinner out with these adorable boys, our first dinner out as a family, and their new found love of french fries with ranch dressing.

Swinging with Daddy.  Dean hated this activity...

Slide!

Mommy and Warren

Daddy and Dean

Letting it go

My heart is heavy this morning.  I am not entirely sure why.  I love Reagan's Garden, love reaching out to families and trying to find some way to give them a glimpse of hope and peace through their loss.  Last night, I sat and made another round of cards to be delivered with the flowers.  I feel such heartache at knowing these cards will go to women who are in labor at that very moment with a child who will never survive.  It breaks my heart.  And my words, my thoughts written in each card, seem so insignificant.  Seem so wrong.  It's not enough.  There are literally no words, nothing to help in that moment.  Each card has a verse that carried me through written at the bottom...the Lord is close to the brokenhearted and saves those who are crushed in spirit -Psalm 34:18.  How wonderful it is that this is true, that God is close to us when we need Him most.  That he saves us when we are crushed in spirit.  THIS is the only thing that provides comfort, peace in our creator.  I feel utterly insignificant and incompetent at relaying this truth.

And, though I know this truth, though I wholeheartedly believe Christ is the only reason I have any peace and hope, that because of His sacrifice I know my story with Reagan is not yet over, I still feel overwhelming bitterness.  I am still angry with God for my pregnancy history.  For infertility, for miscarriage, for stillbirth, for the stress of thinking we would lose Warren and Dean throughout the entire pregnancy, for prolonged bed rest, for a world of micro preemies, for knowing so well what the inside of a NICU looks like.  And on and on it goes.  For some reason, I feel I deserve better.  Haven't I struggled enough? When will it get easier?  Does it ever?  I don't have answers to that, I don't understand why our journey was so difficult and filled with such pain.  I don't understand why those who don't "deserve" it have easy lives, easy pregnancies, easy babies who SLEEP.  And I hold that bitterness in my heart, letting it shape my outlook on life.  It's not healthy.  It doesn't bring Samuel or Reagan back.  It doesn't give me wonderful, warm and fuzzy pregnancy memories with the boys.  It doesn't reduce their delays or cut back on their therapies.  It simply makes me miserable and sad.  It makes me feel uncomfortable around people in their 3rd trimester, or people with healthy babies, or people with little girls.  I truly do not want anyone to have to go through all we did, and yet, I don't want it to be easy for anyone else.  What does that say about me?  What does that say about my sinful heart?  I am broken.  Completely and utterly broken.  And though I know and trust that the Lord is in control and that His plan is GOOD, I second guess Him and think I could have done it better.  So today, my prayers is that I would let it go.  That I would truly rejoice with families who welcome another little one into their families.  Whether through trials of infertility or by accident, that I would find joy when my friends announce pregnancies.  That I would be able to look at little girls without such a gut-wrenching pain in my chest, a literal take-your-breath away feeling as I continue to grieve for Reagan.  I have learned these past 2+ years that I cannot do it on my own.  I must let it go, surrender to Christ, and let Him carry me instead.  I must rest in His peace, knowing His grace is sufficient for me.  So, so difficult for me to do.  And even harder to do on a regular basis.  But for today, for this moment, I am letting it go.  And maybe tomorrow God will give me the strength to do it again.

Friday the 13th

There is nothing quite like seeing your child fall.  In the Savant household, this is a regular occurrence.  These boys tumble, bump their heads, get bruises all the time.  I cannot stand guard over both of them in two separate rooms at the same time.  And I surely cannot contain them.  This is something I had to let go of long ago, my inability to protect my children at all times.  So, I relish in the tender moments when I get to kiss boo boos and make them all better.  And I laugh when Dean learned to "fake fall" simply so he could have a quiet moment with just Mommy and I could kiss his imaginary (and somewhat self induced) boo boo.

But then, on Friday, Dean ripped down the baby gate at the bottom of the stairs.  I couldn't figure out how to get it back up there right and Andrew was out of town, so I just took it off.  It was one afternoon.  As we're getting ready to head up for bed, Warren starts up the stairs.  One step.  I bend down to grab Dean and look up in time to see Warren falling.  He fell 1 step, not the biggest fall we've had by a long shot.  And he screamed.  I ran over and picked him up just in time to see his eyes roll back and his little body go limp.  Terror.  Complete and utter terror.  And in about 10 seconds, he was back to screaming and was fine.  I was not fine.  I frantically called the pediatrician who confirmed that little Warren needed to go straight to the ER.

Now, the ER is a whole different kind of terror for moms of micro preemies.  I knew Warren needed to be checked out, but I also knew he was in isolation.  He's not supposed to come with me to the grocery store, much less the one place sick people go.  I shuddered.  And Dean!  Poor Dean was going to have to come along too since Andrew was away.  I would be exposing both my children to all the things we've kept them isolated from over the past 19 months.  I cannot even begin to express how thankful I am that Uncle Wade and Aunt Aly were able to save the day, to come up to the hospital and get Dean and take him home so he could sleep and not face exposure.

The Children's ER at the Levine left much to be desired.  It was crowded, I'm sure filled with RSV.  I waited to check in and explained about Warren's head injury and the urgency with which the nurse insisted I come straight to the ER.  I was told to wait.  I then explained about Warren's immunity and was told I could wait in a small room off the main waiting area.  Thankful, I headed there.  The security guard sitting outside kept coughing, sniffing, and making nasty sick sounds.  I shut the door as much as I could.  Warren screamed.  For about an hour, Warren screamed.  Then they took us to triage, took his vitals, and told us to return to the waiting room.  Sigh.  Another hour went by before we were taken back to a room.  It was during this hour that Andrew's flight landed and he was able to join me shortly before we were taken back.  We were just getting settled in our room when we were told we had to leave, a trauma was coming in and they needed our room.  Seriously??  Infant head injury and you're kicking us out.  What about all these people here because of a cold?  Kick THEM out.  We waited in the hallway for a bit, watching the craziness unfold.  We were given a bed right there in the hall between 2 rooms.  Seriously?  Did I mention, immune compromised?  Did I mention chronic lung disease?  Andrew took Warren back to the little waiting room and I stayed there in the hall waiting for a room to open.  Eventually it did.  Then, the waiting continued.  Warren fell at 7PM.  It was 11 before we saw a doctor and anyone even looked at him.  Thankfully, he was fine.  Because, if he wasn't fine, I shudder to think of how much damage could have been done during this waiting game.  I have limited experience with the ER in general, but I'm not so sure I'll be taking my kiddos back there again.

Warren checked out just fine and we headed home.  Poor little guy was so exhausted after staying up till midnight that he just crashed.  Didn't wake up when we got him home, didn't wake up when I changed him into clean jammies that hadn't been exposed to an onslaught of disease, didn't wake up when I changed my mind and decided he needed to sleep in our room.  He didn't wake up until I woke him the following morning to eat his Valentines pink heart-shaped pancakes that I somehow thought would make up for the trauma of the night before.  But, he is doing great, completely unphased by the whole ordeal.  The baby gate is secured once again, and eventually I'll feel comfortable with him going up and down stairs again.  We survived our first trip to the ER.  Something tells me it will not be our last...

Tipping point

When I think back over these past 18+ months, and particularly the 15 months at home, I hardly remember the monitors.  Yes, I remember re positioning the lead wires, the little pads around their tiny chests, strapping it all together.  I remember trying to hide the wires during their monthly photo shoots.  I remember the struggle of determining if that alarm was really significant or if Warren had just shifted enough so the pad moved away from his body for a moment...did he actually quit breathing?  He looks okay, maybe I'll just go back to bed.... "BEEP BEEP BEEP" crap.  Maybe I was wrong, as I go running back to his room again.  Nope, he still looks fine, sleeping peacefully.  Maybe I'll just rest here in this chair.  And on and on it went.  Apparently I remember more than I thought I did because, as I sat down to write this, I thought I would have a brief sentence to write.  But it's not in the forefront of my mind, just seems like a distant memory.

Regardless, it requires much thought about the monitors before I remember them.  I definitely remember those colic nights, but not so much the hassle of Warren and Dean hooked up to their bulky heart monitors for, wait for it, 9 months and 6 days.  Eek.  That is a really long time, way longer than it seems.  Our break even point is now approaching: Friday.  Yep, Friday will be the day that Warren has been wire free exactly as long as he had his wires.  It's hard to imagine my little man, running downstairs, pushing his train or his shopping cart or anything that moves, laughing and giggling, as every being confined to such a small area by his lead wires.  God is truly amazing as I think over all these boys have been through and overcome.  It's hard to see little Warren's chest struggling to rise and fall in the NICU, fighting as his oxygen requirements continued to increase, watching the fear in his eyes as he fought to breath a few of those times.  A nightmare, really, to know your child is not getting what they need and to be so very helpless.  And yet I am in awe as these pictures scroll across our screen (Apple TV is really a lot of fun), these tiny little boys God has guarded and protected from the very beginning.  Sometimes I let myself get taken back there, to those early days, to the uncertainty.  Dean seems exactly the same to me - confident, moving full speed ahead, never afraid to try.  Warren, more timid and unsure, requiring a bit more time to get there before deciding to take a chance.  I love these boys so much and am so blessed to be their mother, to get to stay home with them, to get to teach them new and exciting things as they explore their world.

And so we are rapidly approaching what I believe will be the last of these "break even" points, times in their lives where something difficult, challenging, or simply a nuisance, becomes equal to the time without it.  Maybe isolation will be another one, but that's over 2 years before we get to a point where they will have been out of isolation as long as they were in.  Anyway, one more little moment to celebrate as we approach Friday and 9 months + 6 days of NO wires or monitors for these little guys!

Drink, Warren, Drink!

Sometime between July and August, Warren decided drinking from a bottle was beneath him.  My initial thought was, great, he's supposed to have moved on from the bottle long ago.  This child has always loved his bottle and would struggle to nurse for days after we'd give him one.  But, here's what I didn't see coming...he decided the cup was beneath him as well.  Hmm...no bottle, no cup with a straw, no sippy cup, no open cup, no cup shaped like a bear, no cup with a special straw mechanism so you literally pump the milk into his mouth.  Nothing.  For months now, this child has refused liquids.

I don't get it, I don't know what suddenly changed.  In July, no problem.  In August, not going to happen.  He's fully capable of drinking and coordinating his suck/swallow.  He does it every time he nurses.  He did it for months and months before August.  So now he goes all day without a drop to drink, and by dinner time he's a wreck.  He's grumpy.  He's thirsty.  And yet, he throws his cup and pushes away the straw.  Stubborn runs deep in this child.  And how do you treat stubborn in a 1-year-old??  I'm not sure anyone knows the answer to that one just yet.  But if you do, please let me know!  We thought dropping day nursing sessions would get him drinking, we thought a weekend away would surely push him over the edge.  Nope, this child will not break.  We'll see what happens when we're away for several days for a family wedding they can't attend (darn isolation).  I'll be returning to one very proud, very excited Warren.  Or the grumpiest child there ever was.  So sorry to my parents the babysitters...good luck with that one!

A day without Daddy

So, it always seems that an incredibly difficult day follows those easy, relaxed, fun days.  Just a friendly reminder that no, I do not have it all together, and no, I cannot do it all.

Yesterday was a joy.  We laughed.  We danced.  We played peek-a-boo and giggled, running between the columns.  Warren did so much better listening and following simple commands.  One of those days where, even though Andrew didn't get home until nearly 6, I wasn't watching the clock waiting for my helper.

Then, there was today.  Temper tantrums, biting, screaming.  We screamed because the Lego bag was closed, screamed because we threw the Lego over the railing, became hysterical when Mom went downstairs (to retrieve said Lego).  We threw temper tantrums because we wanted more food, because we didn't want THAT food, because we wanted more to drink.  But not out of that cup.  And by the end of the night, Warren and Dean were both standing in kitchen screaming loud enough I'm sure the neighbors thought I was beating them, each holding on to one side of a plastic spoon and pulling with all their might.  Sigh.  Daddy is away for the night and it's like they knew, long before Andrew should have been home.

There was a single moment when they were playing quietly.  I took advantage of that 2 minute interval to address some cards so we could drop them at the post office.  During this time (literally 2 minutes), these boys managed to pull all the toilet paper off the roll, put as much of it in the toilet as physically possible, and "stir" it all together with the TV remote.  Yeah.  I dug a nice remote out of the toilet.  And then pulled out tons of toilet paper.  Sigh again.

I am now wearing an assortment of things no woman should have to wear...various portions of each meal, ear wax, boogers, juice, milk, and spit up.  Ugh.  What a gross day.   But then, in a moment of peace and serenity, right before bed, Warren sighed and laid his head on my shoulder.  Dean gave me a kiss.  Totally worth every second of our difficult day for those last moments before bedtime.  Never mind that Warren wouldn't drink a single drop, that he threw his milk at me.  Never mind that Dean lost it time and time again when he didn't get his way.  I wouldn't change a single thing if it all led up to those quiet moments right before bed.  Love these boys.

October

Ugh.  It's October 1.  Sigh.  I don't even know where to begin as I think about all this month holds for us.

It's the official start to isolation, year 2.  No indoor activities.  No being around other children, having other children in our home.  Flu shots and immunizations all around.  No more running out to the store to pick up some groceries, no trips to Target.  On the positive, no more awkward comments..."Are those twins?" "You're hands must be full!" "Are they natural?" "Really? They're 15 months? But they're so small."  The little old ladies at Publix always light up when they see the boys and like to tell me about raising their own children.  But most people just say the most ridiculous things.

I'm not sure what to expect this flu season.  Last year, I wouldn't have gone anywhere even if I could.  Where would I take 2 infants?  Infants who screamed constantly, nursed for nearly an hour each session, Warren with his colic/reflux.  Nope, no way was I going anywhere.  But this year, this year they are more self sufficient.  They want to explore, love going to new places.  They no longer nurse during the day, so I'm not restricted by that for the first time in over a year.  It's going to be a challenge.  Finding the right activities, exposing them to new things and learning opportunities while keeping them away from any risk of illness.  Who knows, it may be easier than I'm anticipating.  I may find an outlet some other way since their isolation is essentially my own as well.  Too bad PT doesn't have a work from home option!

And then, hitting me like a ton of bricks today, is Reagan's birthday at the end of the month.  I'd love to spend the day up in the mountains, breathing in the crisp air, walking the trails we walked together as a family 2 years ago.  But...isolation.  Boys can't go indoors, we couldn't stay in a hotel.  And being away from them on her birthday doesn't make it better either, so we're not going to leave them home with family while we take the time to grieve.  Maybe we'll find a way to do it, rent a house that hasn't had anyone in it for the week before to limit their exposure.  Because the last thing I want is to be home on the night of Halloween, watching all the Disney princess costumes parade around the street, hearing the little girls giggling, longing for more moments we won't ever get to experience with our daughter.

Officially one!

Today is my due date.  The day Warren and Dean would have entered the world in a perfect environment.  Instead, they are already 15 months old.  I feel like I'm cheating, getting to spend 3 whole extra months with them!  We celebrated in style, with OT visits at 8AM, shots with the doc at 10AM, and our early intervention treatments at 3:30PM.  Wow, what a day!  Poor little guys, still recovering from our weekend away, and their first day back home was such a stressor!  But, they are troopers and handled it all, sleeping soundly now.

I'm not quite sure how to go about life now that I officially have one-year-olds.  (medically speaking, anyway)  What to feed them, how or when to introduce whole milk (or do I even want to do that??), how to teach them all these new things.  Toddlers...no more babies.  Part of me is celebrating their new independence, growth, and development.  I love watching them learn and explore.  And part of me is somewhat grieving that they are no longer babies, that I didn't take enough time to sit and enjoy them, that I wished away those sleepless nights and their neediness...knowing that as they continue to age they will need me less and less.  I'm not quite sure how I feel about that.  I want them to stay little forever.  And yet, I want them to get bigger.  What a weird mix of conflicting emotions!

And speaking of bigger, we got our new weights at the doctor today.  Warren was up 17 lb 4 oz!  I cannot believe it.  My tiny Warren, whose thigh was smaller than my pinky finger, who dropped well below 2 pounds, is such a chunker!  No wonder he is getting hard to hold.  And Dean is slowly getting there, weighing in at 15 lb 14 oz.  Doctor still says he's following his own curve, so no need to be concerned.  And, that's 2 full pounds heavier than he was on his birthday, so he is somewhat catching up.

Warren's Homecoming anniversary

This time last year I was holding the tiny, sleeping Dean close as I packed my overnight bag for our last hospital night.  Andrew had just spent the last 2 days rooming in with Warren.  We were taking no chances.  No new nurses, no miscommunications about his complex feeding needs and how to handle his reflux to prevent those never ending bradys.  Nope, we'd had our homecoming delayed 3 times.  Not again.  It was my turn to take a night up there in the back of the NICU, eat another yummy hospital meal, and have unending cuddle time with my little man.  Yep, Warren was going to be coming home the next morning!  Only 18 hours stood between me and having both my boys home.

I drove up to the Presby hospital for what would be our last trip.  This time, I was coming with a carseat.  Woo hoo!  Little did I know that we would be given the greatest gift that night, an understanding doctor who realized that one more night in the hospital really meant nothing.  We were at day 87...what difference would a few hours make in our ability to care for Warren?  None, he decided.  And so I was sent home a whole day early!  I was giddy.  I couldn't wait to have everyone home!

We packed up our double cartload of stuff from the NICU, gathered all our little mementos, and headed home that evening.  Exactly 1 year ago.  Happy homecoming day, Warren!  One year later, you are walking everywhere, eager to explore all that is around you.  You love being outside, collecting little leaves and pieces of pine straw like they are treasure.  You love opening and closing doors.  But most of all, you love peek a boo.  Your little face lights up with delight when we run and hide behind the columns, popping out when you least expect it.

You, my son, have overcome so much.  Those last 10 days in the NICU without Dean were an amazing blessing in disguise as I got to spend uninterupted hours holding you, loving on you, and praying for you.  I am so very blessed to be your mommy.  I love you so much, Warren!

So many early pictures looked like this....some days we didn't know if we would make it through!  But, every once in a while, we had moments like this: 

Cuddling with my sweet Warren

And now look at you go!  Enjoying your new found freedom and the thrill of being thrown high in the air!

Sharing our stories

I have been so blessed to be able to share our stories of infertility, loss, and raising preemies.  There is so much online support and a sense of community with other moms who have experienced stillbirth and extended NICU stays.

Warren & Dean were featured on the Bee Mighty page (charity that provides therapy services) for several months this summer, along with an interview detailing our entire story.  It's long, and rambling as is my nature, but it's copied into the end of this post.  An abbreviated version can be found here on Rockstar Preemies, a great site for all you preemie mamas to get some encouragement and hear other's stories!

Meghan, let’s start at the beginning. Tell us about the beginning of your journey to have a child and first learning you were pregnant.

Andrew and I were married just after finishing up at Clemson before I went on to get my degree in Physical Therapy.  From the beginning of our marriage, I couldn’t wait to have children.  I loved what I was studying, loved being able to help people, but my heart always longed for my own children.  So, shortly after finishing up school, we decided to try to start a family.  So much in life had been easy and right on track with my plan, I never imagined I wouldn’t get pregnant right away.  So, when that first month came and went, I was shocked when I wasn’t pregnant.  Another month came and went.  Then another.  After a year, I saw my OB who said “sometimes these things take time,” referred me for a test to make sure my tubes were open, and that was about it.  Nearly 6 months later, I finally ended up at REACH where I was promptly (and accurately) diagnosed with stage IV endometriosis and ovarian cysts.  I had surgery a few weeks later, and thought that would fix everything.  It didn’t.  We prayed, and decided to finally move forward with IVF.  Everything went relatively smoothly, and I ended up with several embryo.  Then, I was put on hormones to induce menopause as the endometriosis had returned.  We finally did our first transfer right at 2 years after the start of this journey.   Waiting to hear for 10 days was the longest 10 days I could imagine.  I remember sitting by the pool, phone in hand, waiting for the news.  And when she told me my HcG number, I was ecstatic.  There was a sense of disbelief, an awe that I was growing 2 tiny human beings inside of me.  I felt so incredibly blessed!

As much as you are comfortable, tell us about learning you were pregnant with Reagan, your pregnancy, birth and the time you shared with her.

Reagan was a twin.  I lost her brother very early, by 7 weeks.  It was such a bittersweet moment, to see our remaining child but feel the ache at our loss.  We felt very blessed, though, to have a healthy daughter hanging out in there, bobbing her head side to side.  I still remember that ultrasound very clearly.  Moving forward from there, it was a fairy normal pregnancy.  I had horrible morning sickness which lasted all day until about 18 weeks or so.  It was miserable, yet a wonderful reminder of the miracle we had prayed about for so long.  I started feeling her kick by about 16 weeks, Andrew felt her by 18.  I had some spotting throughout my first trimester which is apparently normal for IVF pregnancies with the hormones you are on.  Once, at 11 weeks, I felt like it was more than spotting and we rushed to the ER.  By the time we got there, it had stopped.  Ultrasound revealed everything looked great and I was sent home.  We breathed a sigh of relief at 14 weeks, as we were into the “safe” zone.  I never felt her kick on a regular basis; she was always changing positions so sometimes I could really feel her and other times I think she must have been kicking at organs or something.  So, I never thought anything of it when I didn’t feel her kick for a day at 21 weeks.  What I did notice was that I had lost a significant amount of weight, seemingly overnight.  Must be all the fluid that had accumulated in my ankles, I thought.  But, just to ease my mind, I made an appointment with the OB and stopped by there after work.  I saw a new doctor who measured me and said it looked good.  Then he said “Let’s just listen real quick.” He couldn’t find a heartbeat on the Doppler.  My heart stopped.  I was rushed to another room for ultrasound, and there it was.  The image that is forever burned in my mind.  My sweet Reagan’s beautiful profile, perfect little hands and feet, and empty chest.  There was no heartbeat.  I sobbed uncontrollably.  I don’t remember much of the next 2 hours.  I called Andrew to come down to meet me.  We drove to a specialist office when I had bloodwork and an amnio done.  And I was told to arrive at the hospital the next morning to be induced.  We spent that night sleeping in Reagan’s nursery, the only night she ever got to spend in there.  The next morning, I was induced at 7am.  16 hours of labor and she was born at 11:16PM.  Our amazing doctor looked up at me after, with tears in his eyes, and said “She’s just perfect.” I was able to hold her that night, and it was the most wonderful thing.  There was so much joy, something no one could possibly understand without going through something similar.  I loved her so much better, fuller, after seeing her and having that connection.  We were able to hold her for several hours, rock to her, read her some of our favorite Bible passages and stories, sing to her, etc.  It was the most precious time, those few hours we got to spend with our first born.  And then, a sweet woman from the funeral home came and took her away in a basket.  Laying her in that basket, with her blanket wrapped around her, seeing her face for what would be the very last time, nearly broke my heart.  It was the most difficult thing I have ever had to do.

What is the grey leaf on the hospital door?

When there is infant loss, a grey leaf is placed on the door.  It’s a universal sign for everyone who comes in the door to know to act appropriately.  Our anesthesiologist didn’t see the leaf and came bouncing in, asking Andrew if he was ready to be a dad.  Ouch.  The leaf is put up to prevent these occurrences.  It is apparently used across the country with stillborn children or infant death on the maternity floor.

How did you manage the grief, then find the courage to try for another baby?

It is only because of God, His grace and peace that I was able to manage.  I found so much comfort in studying and learning about heaven and knowing my baby girl was there.  I knew that Reagan was loved and not longing for anything.  I felt broken, but there was no better place for my daughter to be, and no better father than our Heavenly Father.  Because we had such a tough time conceiving due to my endometriosis and cysts, and because Reagan healed that completely, we prayfully moved forward with another transfer just a few months later.  Everything fell perfectly in line, from no signs of endo or cysts, to hormone and blood levels being just right.  A few more tests to make sure everything had healed, and we were set!  This second time, the emotions of excitement and anticipation shifted more toward dread and discouragement, but God proved bigger than all of that. 

Tell us about learning you and Andrew were pregnant with twins!

I snuck and took a pregnancy test the night before my blood test was scheduled at the doctors, so we celebrated God’s goodness that night.  My blood tests were high again this time, likely indicating twins again.  When we finally made it to the ultrasound a few weeks later, my heart was pounding.  Again, I was expecting the worst.  But there on that picture were two perfectly beating hearts.  We were so excited!  Terrified, hesitant to get attached, but so very excited!  We called our families on the drive home and shared our wonderful news. 

How did you balance your excitement and hope against your fear?

If I’m honest, I’d say most of my pregnancy was spent in fear.  From the very beginning, shortly after than initial ultrasound, I had a lot of pain.  I kept telling Andrew something was wrong, kept going back to the doctor for more ultrasounds, only to be reassured everything was good.  We tried to be excited, but I wasn’t ready to do much planning until much later in the pregnancy.  And then, at 8 weeks, I started hemorrhaging while at work.  I was rushed up to my doctor’s office and sat there, waiting for what I thought was going to be the end.  But they continued to thrive.  I was hospitalized the following day for a week, was told my water broke by my nurse, and yet my boys were good.  At 11 weeks, the specialist told us I would be miscarrying any day because of the size of the intrauterine clot.  I felt hopeless, but God continued to protect our miracles.  And then, I went into labor at 20 weeks and staying in the hospital for the rest of the pregnancy.  I didn’t know it at the time, but the OB on call told me later he stayed there sure I would be delivering another child (or children, in this case) that wouldn’t survive.  He was the doctor who did the ultrasound when we learned Reagan passed as well, so he was familiar with our history.  I let a lot of the fear and scary statistics cloud over my pregnancy.  But each ultrasound, each time I saw those precious little faces, the joy and excitement came rushing back.

I love how you often refer to moms as 'Hope Mommies' what does that mean to you?

Hope Mommies is actually an amazing Christian organization that provides support to mothers after infant loss.  Our hope is not in this world, but in our future home, where we know our children are now.  I have hope as a mommy because I know my story with Reagan is not over, I will get to spend eternity with her.  It’s the only way I was able to begin healing after we said goodbye.  Because it is not a forever goodbye. 

Prior to the boys being born, how familiar were you with the NICU?

I was actually fairly familiar with the NICU before the boys were born.  I am a physical therapist and at one time thought I wanted to work in pediatrics.  During that rotation, I spent several days in the Presbyterian Hemby NICU.  I remember seeing those tiny babies and wondering how moms could handle it.  Once I landed myself in the hospital for the second time, I had several consults with the neonatologists about what to expect, particularly when I hit that 23-24 week mark.  I also had plenty of time to learn about what sort of breathing difficulties, treatments, long term effects prematurity may have.  And each week I laid there, the stats got a little better. 

Tell us about the birth of your mighty boys and meeting them for the first time.

I had been having strong contractions for just over a week.  These were managed with indocin, procardia, daily shots of terbutaline, and occasionally pain meds.  On Thursday night they ramped up significant enough that they moved me to labor and delivery on Friday morning.  My contractions promply slowed back down.  I remember telling my mom that these boys were like the kids who cried wolf…and every time things looked like it was the end, they changed their minds and calmed back down.  I don’t know how many times the NICU was contacted and told to prepare for my twins, at least 4 that I know of…  By Friday afternoon I thought I was stable enough to leave and go back to my old room, so I requested to be sent back to my more comfortable bed with all my belongings.  As soon as I got back there, the contractions kicked back up, of course.  Another night was spent with me gripping the bed rails and focusing on breathing.  Saturday was more of the same.  I called the nurse to request my daily terb shot, but my heart rate was too high for the dose.  My OB was called and he came in to look at me.  He said I didn’t look good.  A pelvic exam revealed that I was now 5 cm dilated.  He looked at me and calmly said, “you’ve done all you could.  It’s time.  I’m going to take these boys by section tonight.”  We cried, it was too soon.  26 weeks, 6 days.  I hadn’t even reached the 3^rd trimester yet.  And then I was put on a magnesium drip and completely lost touch with reality, which might have been the very best thing for me at the time.  Just 2 hours later, we were in the OR.  Warren Andrew Savant was born first, 7:54, and came out screaming.  I was amazed, as I didn’t expect to hear much of anything.  But he screamed for that full 30 seconds of delayed clamping.  Next came Dean, 7:55, also screaming.  Andrew said they looked great, sounded great, were bigger than he thought.  And I sent him with our boys while I was stitched back up and waiting in recovery.  I got to see them sometime around 11 when I was wheeled through the NICU in my bed.  They were beautiful.  I was so amazed at how big they were!  Each weighed 2 lb 5 oz.  Their faces were obscured by the bubble and tubes, but they looked amazing.  I was in love.  There is nothing like seeing your child for the first time, especially these children who were never supposed to survive. 

How long before you or Andrew could hold your boys?

I was blessed and able to hold Dean for the first time the day after he was born.  From the beginning, he was the stronger twin, and our night nurse thought we needed that after our journey.  I was terrified…what if I broke him?  What if he wasn’t ready?  She gently laid him on my chest and it was the most amazing feeling ever.  Even now, I have tears streaming down my face as I recall that first moment.  I was able to touch him, hold him, kiss him.  Melted my heart.  The following night I was able to hold Warren, and same thing, just an instant bond.  A sense that everything was right, that this was what I was created for.  To love my children.  Warren had a little more trouble recovering afterward, so he rested for another day.  Andrew was able to hold him 2 days after I did.  (My sweet husband thought I needed to hold them both first and was content to just wait until I had experienced those first moments).  He held Dean the following day.  There were many days in those early weeks when we would spend all day sitting next to the isolette, from the time Andrew dropped me off around 7:30, until we left in the evenings at 8 or so, when we wouldn’t be able to touch them at all.  But we were very blessed in those first days to have contact.

How long did you call the NICU home and tell us about the day you brought your boys home!

We called the NICU home for a total of 87 days.  Dean came home first at 77 days.  It was a bittersweet moment.  We couldn’t wait to have Dean with us, but it broke my heart to leave Warren behind, to separate them.  We spent that whole day up there with both of them, holding Warren and feeling a lot like I was about to abandon him.  But he was supposed to be coming home a few days later, so it would be okay.  I sat in the back with Dean on the drive home, kept waiting for his apnea monitor to go off.  But nope, everything went smoothly.  I felt a little lost to have him in our home after so many weeks and never being alone with him.  I remember sitting in the rocking chair upstairs in their nursery, holding him tight and never wanting to let go.  He was really an easy baby…took his bottle quickly, burped, and fell right back asleep.  If I didn’t have to pump, I would have been well rested during that time.  Warren’s discharge got pushed back because of his reflux and bradys once, twice, yep, three times.  Andrew and I weren’t taking any chances so we decided to spend the last two nights there.  I took the second night.  When the doctor came in for his daily exam, he asked me if there was anything he could do for me one last time.  I said, “you could send us home now.”   He looked at Warren’s chart, looked at me, and said “I don’t see why not.”  Eeek!  I was ecstatic!  I called Andrew to pack up Dean, bring the carseat, and get us out of here.  We loaded up a huge cartload of all our belongings, and we were out the door!  Our NICU was really our home for those three months, but a home we couldn’t wait to leave!  My boys were reunited, we had them both home, and it was a glorious day.  The next several weeks were spent with little to no sleep as we tried to balance having two home, monitors, reflux, etc, but it was so wonderful.

You write a beautiful blog that documents your family's struggle with in infertility, loss and miracles. Tell us how you started writing and how you are healing and helping others through your blog.   http://meghansavant.blogspot.com)

I started my blog after 2 years of frustration with infertility.  It was a topic that just isn’t discussed in society, a taboo subject.  I had very few people who knew we were trying to conceive, much less all we had already been through without results.  I needed an outlet where I could rant without making people feel awkward, as the topic often does.  I also felt as though there had to be a reason we were going through this, some reason why we weren’t getting pregnant when it should be so easy.  I wanted to look back (hopefully with a child in my arms) and see how God had answered our prayers.  So, I started blogging.  I kept it private for a good 5 months, just me and my thoughts.  Once I was pregnant with Reagan, I shared it on Facebook.  I thought the more personal stuff would be done, my emotional rants would be over, and I could just share some belly pics and updates.  Little did I know, my emotional rants were just starting and my grief would be laid out for all to see.  It has been so amazing to see how God has used the blog, our experiences, and particularly Reagan to bring healing and hope to some.

How do you find time to write to inspire others, take care of your boys, do therapy and (work?)?

I don’t get to write as much as I’d like to as there are just not enough hours in the day.  I have an amazing husband who helps with the boys whenever he is home, calms me down when I feel like I am about to lose it, and helps me get everything done in the evenings.  I don’t know how I would do it without him.  My boys are now almost 1 (wow!) and finally getting the nap thing down, giving me a little more time.  I did quit my job while on bed rest, so I am taking a break from working for now.  I hope to go back one day, at least part time, but it doesn’t seem to be possible right now.  They now have therapy 2-3 times per week, but everyone comes here to the house.  And at this age, it is just like an extra hand to help in the afternoon as we play.  The boys love it.

Last year, we were honored to meet you personally when you attended the Bee Something for Bee Mighty event. Your boys had just graduated from the NICU and I believe it was one of the first times you had left the boys. Tell us why this event was important for you.

It was our very first time leaving the boys.  I had to pump on the drive there and on the way home.  And I changed my mind about 15 times that week about whether I would go or not.  But, it is such a great charity.  As a PT, I know the insurance side of things, how limiting companies are with regard to OT, PT, speech.  And that all the alternative medicines aren’t covered at all.  I also know how quickly that adds up.  With twin, twice as fast.  We had no idea at that point if our boys would ever need services, but I’ve seen firsthand how much an impact therapies can have in the life of a child.  And I wanted to support the organization, as a professional and as a mother.

Have your boys needed therapy to date? What has your experience been?

Our boys have visits with their early interventionist regularly, who they love.  She has been great at giving me ideas for new toys, new games, and other learning activities.  I know what their gross motor skills should be at each age, but have no idea with fine motor or speech.  She has been a huge asset with that.  Warren has just started speech for moderately delayed receptive/expressive speech.  Thankfully, they both love their foods, so that portion isn’t needed.  They are both having their first OT visit this afternoon!  So far, we’ve loved everyone who has come to the house, they are all great with our boys, and explain things well.  We are early in the process of therapy.

Boys are busy! Tell us about your beautiful boys today and just a year out of the NICU.

Yes, boys are busy!  They are now moving everywhere – crawling, cruising, pushing their little walker toy.  They love their classic toys – cups, rings, rattles – and books.  We are finally sleeping through the night and taking 2 short naps.  Our boys are so incredibly different.  Warren is more contemplative and calculated, he thinks about how he’s going to do something, and then he just does it.  Dean has no fear and is our risk taker, he attempts to do things long before he’s ready and keeps trying until he gets it.  They are just starting to play together a bit, which is just a joy to see.

Do you have any encouraging words for other Moms walking a similar journey – through hope, loss and miracles?

You think your life is over when you experience loss as great as losing a child.  I often wondered how I would get out of bed, much less get through the day.  But it does get better.   For me, it was a combination of prayer, trust, and time that helped to heal.  But, under it all, the pain is always there.  I think it’s important to continue to talk about your child with those who will understand.  With the NICU, nurses kept telling me there are no kindergarteners in there.  They do graduate.  It seemed like we were in there forever.  There are scary moments.  But, my advice would be to embrace it.  All the stress, worry, self pity doesn’t change the fact that your child is in the NICU.  And, we had so many wonderful memories in there.  Once they were off the CPAP, I was able to hold them far longer than I get to at home.  There is no laundry, cooking, cleaning to be done while in the NICU…time can be devoted 100% to your child.  I was able to actually spend more time with my boys while they were in the NICU, whether I was just sitting there near them or later able to hold them.  I’d also recommend keeping a journal there under their isolette so you can jot down each little milestone.  Nothing formal, but it’s all a huge blur when you leave.  I wanted to remember everything – first diaper change, first poop, first bath, first time I saw their eyes, first time they didn’t brady during an assessment, etc.  There are so many more reasons to celebrate with our NICU babies!

1 year later

Happy Homecoming Day Deanie!  We are so blessed to have you in our lives!

That's right, today marks the 1 year mark.  One year ago, we brought a living child into our home for the first time.  He was almost 3 months old and had been through more than any baby I'd ever known.  And there we were, left alone with this child of ours, no beeping, no flashing monitor, no security of a nursing/physician team available within seconds.  I remember vividly sitting with him in the rocking chair of the nursery, tears running down my face.  I felt so many different things.  Pure joy at finally experiencing that moment, grief at realizing what I had missed with Reagan, a little like I was betraying her by spending time with Dean in HER room.  I felt lost and confused, an overwhelming sense of responsibility for this tiny human that I never truly felt while in the NICU.

And now, a year later, I have this rowdy, energetic toddler.  Walking the hallway, running behind his train, climbing the stairs, opening cabinet doors, and trying to get into everything he possibly can.  I love his deep laugh, a laugh with such innocence and joy.  I love how he will bring me books and more books and sit still (gasp!) as I read them, patiently turning each page.  I still feel a mix of emotions, from joy to grief, from contentment to frustration.  And I am still completely lost and unsure of what I am doing.  I fear my poor parenting will ruin him, that he won't learn what he's supposed to, that I'm setting him up for failure.  I think that probably every mom has had these thoughts at some point.  But we are all learning together, one step at a time.  Here's a then/now for comparison:

First time in the swing, Sept 2013

 I still fit! Sept 2014

I am so grateful for each of these last 365 days I have gotten to spend with my sweet Dean, for the blessing of being able to watch him grow up into the little toddler he is today.  And I am so excited for what is to come!

Warren's surgery, pre OR

There is a sense of terror at the thought of your child going under anesthesia.  A sense of complete helplessness.  I thought I was good with the plans for tomorrow and was surprisingly calm about Warren's upcoming surgery.  I've known about it for about 10 months now, scheduled and cancelled it several times, and not given it too much thought along the way.  He has hernias which need repaired.  It's supposed to be one of the easiest surgeries with minimal recovery.  So, I thought I was doing good, prepared, and ready.

We met with anesthesia nearly a month ago to plan and determine his risk level.  I was hoping it could be done outpatient, but we were kindly informed "no."  He needed the main OR, the special equipment there on standby just in case he didn't tolerate the anesthesia as planned (just like his mommy...)  I heard all about what to expect, what he was going to be facing, duration of the procedure, etc.  And, I was ready.

But then, this afternoon, I get a call from the nurse.  She's telling me what to bring for him for the day, about the gown he'll be placed in for the procedure and his 24 hour stay, the gas they'll have him breath to help with his separation anxiety before they take him back.  And it hits me, like a wave.  This flood of emotions I wasn't expecting.  This flashback to their first moments, when I couldn't see or touch them.  It breaks my heart that Warren needs to be given a special medication to keep him calm, that he could potentially be screaming hysterically without it, and that I will have no way to calm him down.  No way to comfort him.  As I'll be home with Dean.  I've been saying that will be a wonderful distraction, but now I just feel this sense of guilt that I won't be with Warren.  That he'll need his mommy, and I won't be there.  It only makes matters worse that he refuses all bottles, cups, etc and will only nurse.  He's going to be hungry, hurting, scared, and without his mommy.  Oh, but Daddy will be there.  What sweet cuddle time they'll have together!  How precious that sweet time was with Warren while he was still in the NICU and Dean was home.  No distractions, just me and Warren snuggled up together in the recliner, his resting quietly up against me.  How I pray that would be all they get to experience together tomorrow!

So, as I anxiously wait for tomorrow to come and go, to put this behind us, I am praying constantly for Warren, his recovery, the doctors and nurses who will be working with him, and for our anxious hearts to be surrounded by God's peace and comfort.  Updates to come after surgery tomorrow!

Some things that sting

As a women who has endured infertility, loss, and sick infants, there are a handful of things that people say without a care in the world that really get to me.  Today, it's been both of these, right around the same time.  So I'm choosing to vent while my children sleep peacefully and their baby food is simmering.

#1. "We're going to start a family" or "our firstborn made us a family."  I used to say that all the time, we tried to start a family.  But, as time went on, I realized that Andrew and I were very much family already.  We loved each other, were committed to each other, traveled together, shared our hopes and dreams, and shared a name.  I'm not sure how having a child would make us more of a family.  But to those of us who can't conceive, who wait years for that child, it makes us feel as though something is inherently wrong with us.  Trust me, the guilt is already there on a regular basis, questioning everything, and this phrase only adds to the pain.  Particularly for those women (and men) who are suffering silently.

#2. We don't care what gender as long as it's healthy.  Heard this one while watching the Bachelorette (oh my goodness, I can't believe I just admitted to watching that trash...it's my guilty pleasure. And embarrassing...)  It's the first time I've heard that since the boys were born, but I used to hear it all the time when pregnant and never thought anything of it.  Who knows, I may have said it once in my life.  Of course we all want our children to be healthy.  No one wishes for a sick child.  No one wants to see their children struggle to breath, surrounded by a team of doctors and nurses, hooked up to machines, faces obscured by tubes.  Of course not.  But again, this statement stings to those of us who have had babies who are not "healthy."  I wouldn't change a second of Reagan's existence, however short it was, and this just casts her aside.  I cherish those early months in the NICU, extra time I got to spend with my boys, time so many women never get, celebrating countless milestones most take for granted.  Our journey has not been easy, but I wouldn't trade what we have and where we are today for "healthy."  Do I wish Warren & Dean didn't have their medical issues? Absolutely.  Would I like to be able to take them in public during the fall, winter, or early spring?  You bet (especially this year as they are "big boys" now!) Would I like to hold Reagan in my arms every day, watch her laugh and play?  Of course.  But God has used each of these difficulties, these "unhealthy" children, in my life, in Andrew's life, in others' lives.

I know nobody means any harm when these statements are said.  I know nothing was directed at me personally.  I'm sure I offended women at one time with these very statements.  So I'm just putting it out there for those who are tempted to "start a family" with their "healthy" child.  It's picture perfect, but when it doesn't work out like we dream, the statements dig just a bit.

OT

So, 3 weeks ago we had our second set of evaluations for the boys: Occupational Therapy.  She asked ridiculous questions, like does your child help with dressing?  Ha!  Dean does the exact opposite of helping with dressing.  He rolls and wiggles and throws his head back, screaming hysterically.  "No!!  Don't put that shirt on me Mommy!" Like I am torturing him.  It's even worse when, God forbid, someone else attempts to dress him.  My simple response: No.  They do not assist with dressing.  I was unaware at 1 year old that this was expected.  Apparently it is.  And once again, we were diagnosed with developmental delay.  (For far more than just the dressing issues).  How do parents keep track?  How do people who have no therapy background know that, at 12 months, a child should pick up a small object using a pincer grasp?  I feel like I am struggling to keep track of the milestones when I had several classes and an internship in dealing with the physical side of those.

This time, Dean was a little more delayed than Warren.  But both qualified for occupational therapy, falling well below the normal range for their ages, even when we subtract 3 months for their prematurity.  Sigh.  When I look at them, I just don't see all these delays.  I tell everyone how great they are doing, how they are advancing and growing.  Only to be told they are not.  It's incredibly frustrating.  Yet, at the same time, I am so grateful we receive all these services in our home, on our schedule, with some great women who (so far at least) have been incredibly accommodating as I deal with the boys schedules.  Our first session is this week.  If we schedule as recommended, that brings our weekly therapy visits to 4.  Add in the near monthly weight checks, soon to be monthly synergist shots, hearing and eye tests every 3 months, etc. and my new life will apparently be attending doctor appointments.  I now understand a little better how overwhelmed my patients must have felt when I recommended PT 3x/week!  But I am ready to help Warren and Dean catch up to where they should be, as we only have 11 more months where the excuse "but they were 3 months early" can be used...craziness!

Speech Therapy

Every other week our early interventionist comes to the house and give me a wealth of things I can use to work with Warren and Dean to get them closer to meeting all their goals.  After each visit, I buy the new toy, or make the new sensory bag, play the new game, etc.  I absolutely love it because I am always giving them something new and different to try. (without having to find idea on Pinterest!)  I am intimately familiar with how they should be progressing with gross motor from my PT background.  And that is primarily what I have focused on, especially in the beginning.  At their 9 month evaluation, Dean was right on track with his motor skills without even adjusting for him being a preemie!  BUT, I have neglected some of the other areas.  I just didn't know...didn't know milestones to know how delayed they were getting.  And so, they are currently both 7 months delayed in fine motor.  Oops.  And Warren is 5 months delayed in speech.  Oops again.  (These numbers are without adjusting for their micro preemie status) There is so much responsibility on preemie parents to get their kids to catch up, get them with the right therapist, provide this amazing learning environment.  And here, I thought I was doing it all, but no.  Epic failure.  I saw those numbers, those months of delay, and tried not to feel too disappointed.  Never disappointed in my children, but in myself and my job as a mother.  So, I discussed with Bright Start, and we started speech last week.  Of course, Dean would decide to say his first word earlier that day.  "mama"  Such a proud moment...more on that in another post...

Our first visit was great.  It's weird to be on this end of therapy, after asking so many of the same questions myself during my pediatric rotation (wow, was that really 5 years ago already???).  Getting their long medical history, my pregnancy history, etc.  And then came all the questions.  Does h babble? No.  Does he string vowels together? No.  Does he make noise other than crying to get attention? No.  On and on.  No, no, no. Poor Warren.  I had no clue he was supposed to be doing these things.  Am I just slow?  How do working mothers handle both?  Regardless, the evaluation revealed that Dean (with his newly found babbling, ptyerdactyl screeching, and loud laugh) does not qualify.  But Warren will.  He's always, as the doctors said in the NICU, been a little more immature with his development.  But this is the first time there has been a big enough difference that he will have a service that Dean will not.  Now, those will be some interesting treatment sessions...what to do with an 11-month-old who is into everything and has separation anxiety??  Should be entertaining, to say the least!

Wire Free

After more than 9 months of constant monitoring and wires, we are all now officially wire free!  Warren has finally graduated from his apnea monitor!  I don't think I realized how much time we spent prepping those pads and wrapping the strap around his chest until we didn't have to do it for the first time last night.  And we were ready for bed so much faster!  Sweet Warren gets to have lotion on his chest for the very first time.  And nothing uncomfortable poking him and rubbing him all day and night!  Swaddling is easier.  I don't have to worry about stepping on the wires or getting them caught in the crib as I lay that sleeping child down to bed.  No more "loose lead" alarms in the middle of the night because he wiggles WAY too much for these baby monitors.  God is so GOOD!  All outward, blaring signs of their preemie-ness is gone as they continue to grow and develop.

If you look closely, guess what you see.  Nothing!  No wires sticking out of those pants!!  Woohoo!!

26 weeks and a brady

I cannot believe my boys will be 7 months old next week.  Craziness.  This time is all going WAY too fast.  And it was just about 1 year ago that we found out we were pregnant.  How is that even possible??  To have 7 month old babies only a year after learning we were pregnant in the first place??  So, I started doing the math.  The nice thing with IVF is, there is absolutely no budging on the due date.  Normally, on may be off by a few days.  Not so with us.  We knew exactly when.  And when I started counting the day, it lined right up...almost.  That's right, my due date was wrong.  I counted it again, confirmed with Andrew, and sure enough - we were told wrong.  Or I heard wrong.  Or it was just put in the computer wrong.  Not real sure exactly as those early weeks are quite a blur.  I had pain with this pregnancy from before we even saw the little guys, so I never had a carefree "normal" ultrasound.  So who knows exactly where I pulled the due date I told the OB/GYN, the one that went down on the boys records.

When they were born, they were 26 weeks and 6 days.  Now, really, this changes nothing.  They were only hours away from being a true 27 weeks.  But as I reflected on how wonderfully they are doing, that extra day makes me even more grateful.  26 weekers don't typically go through an entire NICU stay without any complications.  God was so gracious to us!  But then I was thinking about my pregnancy.  When I went into labor the first time at what we thought was 20 weeks, I was admitted to L&D for a weekend and it was stopped with meds.  Had they known I was only 19 weeks, I would have been admitted to the 7th floor women's center with no meds.  Medically, it would have been a miscarriage and they wouldn't have tried to stop it.  It's crazy that just one day made that much of a difference.  So whoever made the initial error (whether the nurse or my hearing!) I am so appreciative!  They also planned my second set of steroid shots when I hit 27 weeks, and we wouldn't have received those without the error either.  I am just in awe.  Our little miracles became even more miraculous!

We have been trying to get the apnea monitors off W & D for a while now.  I never felt like Dean needed it in the first place, and I am just tired of fussing with the wires, hauling around the monitor when we go out, tripping over cords.  Plus, they have started to play with their wires.  Neither of them have had an episode since October.  OCTOBER!  It just seemed time.  Warren still has major reflux, so I thought we'd keep his for a bit longer just to make sure.  And then, yesterday in the wee hours, it went off.  It took us a second to realize what the alarming noise was as it was the first time that's happened since they've been out of our room.  Warren's heart rate dropped somewhere below 60.  And he was sound asleep but with his face buried in his sleeve.  And our little rolly polly now won't stay on his back for a second.  In that instant, I became so grateful for the monitors and the peace of mind.  It's the only true brady he's had that wasn't when he was spitting up or eating (when we would always be right there and would notice it anyway).  So as I was lying in bed for the next 1.5 hours trying to fall asleep, I realized how much I rely on those monitors, how much better I sleep knowing there will be an alarm if anything happens, and how hard it will be when the doctor officially says they are ready to come off.  Thankfully our doctor is conservative and doesn't seem to be rushing the process.  Just another blessing we have to be thankful for.

Learning to be content

For the most part, through this journey, I have not really thought of my boys as preemies.  I read about women who were grieving their decreased pregnancy times, their inability to bring a baby home immediately, the NICU time, etc.  And I've had my moments with that, but found them few and far between.  Compared with my last pregnancy, I made it 6 weeks further and my boys survived.  What more could I ask for??  And I was already big and uncomfortable...definitely not missing out on getting even bigger and even more uncomfortable. (though I absolutely would have if it had been an option to keep them healthier)  And I knew long before they were born that I wouldn't be taking them home with me the first time.  The days did begin to drag on, but I never doubted they would make it.

But this weekend, as I'm standing in church surrounded by families, I felt as though I was grieving for the preemie state for the first time.  Sure, I've been frustrated with the feedings and thought things would be easier if they were born later, if I could have had even 1 week into the 3rd trimester.  But this weekend, I really felt the weight of all our family missed out on because of their prematurity.  Because of isolation, there are only a handful of people outside the family who have even met our boys, much less been able to hold them.  I don't get to show my boys off, bring them with me out in public.  We have had so much support from our church family, but it will be another 3-4 months before they will be able to see these blessings that were prayed for so diligently.  When we knew we were having twins, I dreamed of sticking them in our carriers and bringing them to church and small group, putting them in the stroller and heading out to just walk in the mall, just to get out again after all the bedrest.  I always swore I wouldn't be one of those moms who would never do anything or go anywhere, whose child had to sleep in his crib at exactly 9:00 or the world would end.  I wanted my boys to be able to nap in the car on the way up to meet Daddy for lunch in the park, to be able to continue their nap in the stroller while I jogged.  Of course, I completely underestimated the task of breastfeeding multiples.  Absolutely no way to do that discreetly in the park while we nibble on sandwiches!!  But I've still worked hard to try to keep the boys sleeping schedules and such flexible, even though their eating isn't so flexible, and we have no where we can go...

I found it odd that the pain of this, of not just me being housebound but the boys, would hit while I am finally able to attend a church service for the first time in 6 months.  Devil works constantly, tempting me to be discontent after the boys slept for nearly 12 hours at night and had a great morning feed, allowing me to get out of the house.  Church is also still one of the places I feel the pain of losing Reagan the most.  It's the only place we'll still go where she would have come along.  Again, we have some wonderful support from there, but also a lot of hurtful things said to us from those who were once friends from there.  After the sermon, we sang 2 songs.  The first was one I had never heard before and spoke to me about trusting God when we cannot understand.  The second was It is Well with my Soul which is a simply amazing song, but one we sung at Reagan's memorial.  And I couldn't stop the tears from flowing.  (for anyone who doesn't know the story of Spafford and how he wrote the hymn, you can read it here.  So powerful.

Blessed

I am sitting in the rocker in the nursery as I watch my two sweet little boys sleeping soundly and I am left to reflect on just how blessed I am.  These boys, with all they have been through, being where they are now during this holiday season.  Last Thanksgiving was utter despair, and this year we have much to rejoice in.

I joined a preemie awareness group and have loved seeing the posts from others, seeing these tiny ones develop into toddlers, teenagers, adults through all the pictures.  So many little miracles.  But then I read about the 30 weeker still on oxygen at home, the 28 weeker with brain bleeds, the 27 weeker with NEC...and it goes on and on.  I am just left in awe of how smooth our NICU ride was.  We were in there for a LONG 87 days, but mostly it was just waiting for the boys to breathe on their own and then waiting for them to eat on their own.  I didn't go in each day terrified of what news we would get.  Every single test was normal by the time they came home - brain scans, heart scans, hearing, ROP - it all checked out.

When I think of my time there, I have very few truly scary memories.  It was a nervous wreck when they each had to have blood transfusions and when NEC was mentioned for Warren (negative).  The worst moment was when Warren (poor guy) had water dumped down his cpap and he got choked on it, maybe around 2-3 weeks old.  I watched him choking (nose plugged with the the breathing tube and chin strap on, so no way to get any air in), turning blue and fighting to get in some air, and I sobbed.  And then called Andrew and sobbed.  And then sobbed all the way home as I remembered the moment.  Warren was perfectly fine after an hour or so, but I was not.  And for having two micropreemies, a simple "dumping" was the absolute worst it got for us.  Praise the Lord!  No surgeries, no procedures, no reason for them to ever call us while we were at home.  I watched the little girl across the way from us battle with several surgeries, NEC, sepsis, and eventually MRSA and could only stand amazed at how well our boys did.

As I read about these preemie stories, I feel so different.  We knew in advance we would have preemies, knew they would have a long NICU stay.  There was no moment where everything suddenly changed or water broke or anything.  I never expected to leave the hospital with the boys when they were first born.  And so my early NICU days were not spent worrying and stressing but just being so excited!  I couldn't wait to get there each morning and hated to leave.  We feel as though the boys' biggest battle was not in the NICU but while I was still pregnant.  That was when we worried and prayed for a safe delivery and healthy boys.  And God answered that prayer in a mighty way.  He chose not to have me continue to carry them as we sometimes prayed, but gave us two incredibly healthy boys.  We have 27 weeker twins who are sleeping 7 hours, have no special medication, no brain issues, and are growing strong.  When I think of all that could have gone wrong, I realize how incredibly blessed we are.

It is so easy to take it all for granted.  Especially when they are both crying.  But during this week of Thanksgiving I am feeling extra grateful and appreciative of where we have come from last year, all the changes in our lives, and these two little miracles who were sleeping soundly when I started this...