Clemson

To kick off the end of isolation, we took the boys to their very first Clemson game.  We did a single tailgate last year which is such a blur now.  I think I spent more time trying to feed the boys/pumping in the car than I did actually out at the game.  But this time, we explored Clemson a bit.  We took the boys downtown to do some window shopping.  And, along the way, we ran into Tahj Boyd and Sammy Watkins!  They signed our boys jerseys and smiled awkwardly for a picture before getting in trouble for signing merchandise not purchased in the store...oops.  But who can resist twins??

Next we walked through campus, across Bowman field, and into the amphitheatre where Andrew officially asked me to be his girlfriend back 11 years ago.  Hmmm...that suddenly makes me feel old.  They loved it.  Warren looked all around, inquisitive and taking it all in.  Dean gave big goofy grins.  And we received the expected number of "are those twins??" questions.  Still not quite sure what to say to that...

Taking in Bowman and watching the frisbee/football games

Family shot in the amphitheater 

After all that excitement, we headed into the stadium.  Warren was a little terrified and clung to me for dear life.  He never cried (except when Grandpa was holding him and yelled at the game...) but we could tell he wasn't super excited about it.  Dean, on the other hand, loved every second of the game.  His blue eyes sparkled and he laughed the whole time.  Such big grins.  Overall, they did far better than we ever thought they would.  I think we paid for it the next day, though, as we fully expected we would.  Still trying to get them back on track now...

Robbed

Today, I am longing for what I have missed.  I'm not sure why these recent days have been more difficult...possibly sleep deprivation?  Possibly spending more time with some amazing Hope Mommies and sharing Reagan's story?  Possibly seeing all the hugely pregnant women on FB and realizing how much my boys missed out on?

Coming home outfits.  I have several friends pregnant and due any second now all posting about coming home outfits.  Ouch.  Reagan had no outfit...her tiny little body was too small for even the little tutu I brought with me to the hospital.  Her head didn't fill out the handmade hat.  With my boys, we didn't know exactly when they would come home.  Dean came home in something semi-cute, but we were so heartbroken at leaving Warren behind it was one of those bittersweet moments.  Warren coming home was a complete and utter surprise.  I don't even know what he wore home...whatever the nurse decided to put him in that morning I suppose.  Don't get me wrong, I was delighted to have him come home a day early.  But it was a frantic rush to gather 3 months worth of stuff from our NICU area, put it in bags, and get picked up.  No cute little matching smocked outfits as I had once dreamed.  And, they came home to a room full of random junk as they had no nursery yet.  Never what I dreamed for us and the first children we would get to bring home.  Never dreamed that I would even have to clarify that - first children vs. first ones home.  Makes me long for heaven and our future so much!

On a positive note, we are headed to Clemson this weekend!  That's right, no more isolation.  The boys will attend their very first Clemson game since we weren't allowed in crowds this fall.  The spring game.  Should be so much fun!  I am excited to get to take them to downtown Clemson and walk the streets where Andrew and I fell in love.  It will also be their very first shopping trip!  They've never set foot in single store, restaurant, etc before.  I hope to have some great pictures along with reports that they did well with the change in schedule (gulp) for next week!

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!!

April

April 1.  The day we've been counting down to is finally here!  The end of isolation.  That's right.  Look out world, here come the Savants!

Maybe... Well, let's face it, things change when you spend 14 months confined to your home or the hospital.  And ultimately, I'm a little terrified to bring the boys out in public.  Don't get me wrong, I'm super excited for them to meet people, to take them to church, to bring them to the office.   I can't wait for the freedom we're about to have.  But...their lungs are still weak.  If they catch a respiratory illness, it can still send them right back to the hospital.  I shutter when I think of events like church...everyone shaking hands when they get there, sending their germ infested children along after holding their hand walking into the sanctuary, sitting in the service and scratching their faces.  And THEN walking up to us, greeting us with a smile, and touching Dean's hand...which immediately goes into his mouth.  Uck.  The whole "you have to build an immune system by exposing them to germs" thing absolutely does NOT apply to micro preemies with chronic lung disease.

So, how does one communicate this nicely while in public?  Please don't touch my child?  Put them in a onesie that says "You can look but don't touch"? Or "Share your prayers not your germs"?  How do we kindly let people know that the end of isolation doesn't mean our boys can now interact normally with other adults or children?? (Besides blogging about it and hoping everyone who may come in contact with them reads this and understands...subtle, I know)  I'm going to have to invest in industrial strength hand sanitizer and just squirt it on people's hands if they come relatively close to us.  Any advice/help from you other preemie mamas out there??

That being said, there is so much hope moving forward.  We survived our first winter of isolation.  The boys can see people who haven't had a flu shot...after they've scrubbed up to their elbows for 1 minute and only have healthy children of course!  I am taking them to visit Andrew at his office tomorrow.  The boys first trip indoors that is not to a doctor's office!  Then, I may stop somewhere on my way home.  Who knows, cause I can do that now!  How freeing it will be!  And yesterday we went for a walk without screaming in the stroller the whole time.  Praise the Lord!  Baby steps...all about the little things.

So tomorrow we will cautiously reenter society (armed with sanitizing wipes, lysol, hand sanitizer) as the boys visit daddy for the first time.

Dean

So, Warren got a little blurb - only fair to give Dean one too!  I thought now, in the middle of screaming chaos in our house as we "sleep train" (ha!) would be as good a time as any.

Dean came home our easy child.  I remember thinking during those 10 days it was just him how easy it all was.  When I drove back to the hospital each morning around 6:30 everyone commented on how great I looked (aka showered and dressed in real clothes).  I thought, of course.  I've already done the pumping thing every 3 hours.  What does an extra 10 minutes to change and feed this child really add??  Cumulatively, it was 30 minutes less sleep per night.  We just fed him, burped him, and put him right back down where he would quietly drift off to sleep.  Oh, what I wouldn't do for someone to quietly drift off to sleep again!

Dean has been our more content child, for the most part.  BUT, he is definitely all or nothing.  When he is happy, this is what you see:

But when upset...

Poor little guy, wears his emotions right on his sleeve.  All or nothing, that's what you get.  

Dean doesn't contemplate like Warren, he just goes for it.  He'll be sitting and just reach for the toy that is so far away he slams his head down on the ground.  He started "crawling" in February and there's been no stopping him.  But because he starts things so early, he takes a while to perfect them.  Breathing trials started, stopped, started, stopped, countless times before he figured it out.  He would nurse great one feeding and then have no clue the next.  He rolled over a few times in early October (when his adjusted age would have been only about a week old) but then nothing for a while.  Same pattern now with sitting and crawling.  While Warren doesn't start something until he knows he can master it, Dean plows full steam ahead.  I envision countless trips to the ER in my future for this little guy and stitches/broken bones.  Yesterday evening he manage to hit his head about 5 times in the 2 hours Andrew was home.  And he'll manage to fall in the one direction we can't catch him or toward the single corner/hard toy around.  Or just roll right into it.  No fear in that child.

Reagan's Due date year 2

Today is another painful day in our journey of loss.  Sweet Reagan's due date.  I don't know exactly how to feel today...we knew she would not have actually been born today.  We always thought she would come early, probably sometime in February, but there is still this sorrow associated with today.  I spoke with another mom who had a loss about it, about how it was still so difficult even though it was a day that would have meant nothing had she lived.  But, for the entire pregnancy, this is the day you count down to, look forward to, dream about.

Last year, her due date was absolutely awful.  We had a wonderful trip to the beach planned to have some time to rest and celebrate her life.  And I ended up in the hospital a few weeks before and told not to travel.  And, just the day before her due date, we were told by the specialist that we should expect to miscarry at any second.  That the twins would not make it.  That at 11 weeks, the boys would not live to see 12.  I remember spending the weekend in utter despair and crying out to God that we wouldn't have to endure the pain anymore.  The physical pain I was in from the pregnancy complications plus the emotional pain of what we lost put me over the edge.  Andrew finally convinced me to take a full dose of my pain medication and I vaguely remember him holding me tight as I sobbed and eventually drifted off into sleep.

Today, one year later, life looks so different.  God performed a miracle and saved little Warren and Dean.  I have been immensely blessed to watch them grow and develop despite their trials in the womb and very premature birth.  Part of me will always wonder and question why God didn't chose to perform that same miracle with Reagan.  And part of me will always feel a sudden pain and anguish when I see other little girls.  I pray that will one day go away, that I will be completely filled with God's grace and peace that I no longer feel that way.  But today, it is just bubbling up fresh.

There is so much joy that I associate with Reagan's life.  God used her, her short life, and my love for her, to teach me so much about Him and others.  Nothing will ever be the same.  I often find myself only blogging when I have these moments of immense pain and loss, but I am really so grateful for every moment I spent with her.  I'm grateful for the video we have of her dancing away in my tummy, smiling at the camera, sucking on her thumb.  I love that she was the first little one I ever felt kick, that Andrew got to feel that.  I love the little pieces of her that have found their way into every room in our house - pictures, butterflies, board, mementos.

One verse is hanging on our bathroom mirror, has been since about a month after her birth.  Romans 15:13 "May the God of HOPE fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit"  We serve a God of hope, even on days like today.  Even as I sat sobbing in the chair clinging onto my boys (who are old enough and aware enough now to just both stare at me with big eyes of concern, looking from my face to each other and back again).  God is bigger than all my pain.  And, on days like today, I must be in constant pray that I will remember what Reagan is doing.  That she's dancing away in heaven, playing with her brother, singing with a perfect little voice.  As I look at her footprints, I imagine those tiny little feet running through the flowers, see her blonde curls bouncing, and her face lit up in laughter.  She's not here with me, crying because she's hungry/tired or needing/longing for anything.  She is perfectly satisfied in a place without sin.

We love you always, Reagan.

Warren

I feel as though I am getting to the point where I say "the boys" too often.  Everything I've read and heard about discusses the importance of making sure they have their own identity.  When I write, I discuss either how grateful I am for both boys, or how frustrated I am.  And I feel like poor Warren gets the brunt of my frustrations.  So often I discuss his health conditions, reflux, colic, screaming, etc.  And he is the more difficult and fussier child by all means.  But, when he chooses to be sweet, he is also the sweetest boy.  Many of our pictures feature this face:

BUT, sometime you capture this one:

Here's what I have learned about Warren.  He is very inquisitive.  He loves watching you, figuring things out.  There is no gradual learning.  He takes it all in, and then just does it.  From the very beginning, that's what he did.  He started his room air trials in the NICU 3 weeks after Dean and came off breathing assistance on the same day.  He took over a week longer to start bottles and yet got his feeding tube out only a few hours later.  In early December, he couldn't pick his head up while on his belly.  A few days later he could pick it up and roll over.  Another few weeks and he could roll all 4 ways.  And this past week, on Tuesday he couldn't handle a pull-to-sit with the Early Interventionist.  Flopped right over, major head lag.  And yet, on Friday, he decided to start sitting by himself.  Not propping on his arms or leaning on something, just full on sitting.  No assist required.  Look at this kid!

Warren has also become my cuddler. I never would have imagined that after our NICU stay, but he loves to just sleep right on us.  I try to not do that too often, as he got spoiled with visitors and Daddy and now fights to fall asleep on his own.  But I can still only handle so much screaming (as can Dean before he wakes up) so Warren wins out and sometimes will fall asleep on me.  Such a sweetheart, and such tender moments we share.  I have to remind myself that he won't do this one day and make the most of the fact that he is not napping and I'm sure not getting that shower in...  But worth every second of it.  Speaking of which...he's now reached his max crying time for this "nap" and I'm going to rescue him.