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.  

Friendship

Time of isolation is rapid approaching the end!  Two more months, max, and I can leave the house!  It's been over a year now since I was first hospitalized with the boys.  Even longer since I felt like a human being ready to engage in regular, every day life.  One thing is for sure, being housebound for so long definitely reveals something about friends.

I have been shocked and appalled by what someone I once considered a close friend have said to me during this time, as they wait for me to move on and get over what happened to Reagan.  First, let me be clear that one does not "get over" the loss of a child.  And to try to put a time frame on that is just ridiculous.  Reveals the only reason we were ever friends is because of convenience as waiting just a few months was not worth it.  I'm getting off subject...not the point of today's blog.  What this person has made me realize, though, is how blessed we are by others around us.  It is so hard to keep in contact with someone you can never see, especially in an age when phone calls are rare and everything is done electronically.  The rest of the world continued living life - raising children and working - while I sat around on bed rest.  Then lived in the hospital 35 minutes away, unable to leave.  Then struggled with raising my own preemie, colicky babies while confined to the house and on a physician-ordered strict feeding schedule.  

A true friend is one that loves and cares for you, even when you can't do anything for them in return.  I have several women who I have gotten to know better during this last year, who reached out to me when I couldn't give back.  Who brought over meals without being asked, took me to doctors appointments when I couldn't drive, sat with me in the house and hospital on their brief time off, altered their schedules to meet me at the park (the only place the boys can go).  And I haven't said enough how much I appreciate that, how wonderful you ladies are.  Ever single text, phone call, and email has meant so much to me.  Helped me to not feel so isolated here.  Even when the timing doesn't work out, when my children are up all night and I cancel or yours are sick and you cancel, just the offer matters.  "It's the thought that counts" is for sure true.  I love the phone dates and emails sent back and forth.  BUT...two more months!  That's right, 13 months down, 2 to go!  It's just going to fly right by. (Unless Warren has more nights like last night when he was up screaming for nearly 5 hours...then it drags)  And then I can take all you non-flu shot people up on your offers!

So thank you, to everyone who emailed/texted/called even just once during this time.  I know it's been a long time since I've seen many of you, and I know life has changed each of us in the mean time, but I really appreciate every single effort!

Nursery

Over the past several months I have had numerous requests to see the nursery pictures.  And I have been completely slack and never posted a single one!  So, since my boys are napping (at the same time!) and our water is out so no cleaning or laundry (darn!) thought this would be the perfect time.

Our reading nook, where we sit and rock for storytime before each nap.  Most comfortable chair ever!  And thanks Pinterest for the Ikea spice rack idea for books!  The blanket shows some of the theme, with elephants, giraffes, and a hippo (we think hippo...there's some debate on what that yellow animal actually is...)

Changing table/dresser (taken at an odd angle to avoid my pic showing up in the mirror)  Thanks to my parents for staining my old baby dresser and making the changing station for the top and my mother-in-law for getting and painting the shutters/window pane mirror to match the room.  Such blessings and generosity while we were all hospitalized!

Shelf behind the chair with handmade elephant/giraffe complements of Rachel (you can check out her stuff here to support adoption)

Cribs!  Well, one crib.  Dean's looks exactly the same right next to Warren's.  For some reason I didn't get a picture of that though.  

Our little piece of Reagan sticking out from behind Warren's crib.

The quilt rack with matching bedding hanging, shelf with our Reagan board (complements of Baby Boards) and the elephant/monkey stuffed animals that sat by their side in the NICU.

Nursery art painted by my talented Mom to match their bedding

Our first Clemson outfits! Signed onesies from Dabo, booties, and helmets I made during months of bedrest

If I get around to it one day, I'll take a picture of the whole room like I should have and add that back in right here.  :)