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

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...

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.

Getting dressed

Any new mother will tell you what a challenge it is to find the time to shower.  Much less blow dry the hair, put on makeup, fix the hair, and put on the big girl clothes.  I have been living in that world.  I have always, always had myself put together.  You would never find me running out to the grocery store in a t-shirt.  My hair was done, face on, professional dress for every day at work.  I absolutely HATE t-shirts.  They're not comfortable, the neck feels like it is strangling me, and it just makes you look frumpy.  You're kidding yourself if you think you look good in a t-shirt.

During the first 3 months, when I went to the NICU, I continued to pump round the clock, getting up 3 times each night so I was never going more than 3 hours at a time and was coordinating that schedule with the boys feeds during the day.  Yet, each day, I showered, put on real clothes, dried my hair, (Thankfully my hair requires only a blow dry and no straightening), and drove to see my babies, timing my arrival for their first feeding for each day shift.  Once we were home and isolation started, things quickly deteriorated.

It really snuck up on me.  I had these tank tops that I would nurse in because I could use it to pin down their hands (hands that like to grab and poke and pull).  Then I ordered 2 more of them, because they were just "so comfortable."  Eventually, I was washing my hair every other day because it was too time consuming to try to blow dry the hair I hadn't had cut in over 1.5 years.  And then, it became showering every other day.  Then, sometimes only 3 times a week.  This week, though I have showered and laundered the clothes, I realized I wore the same navy tank top 4 days in a row.  So gross.  Even though it was washed at least once, maybe even twice, in the middle of that, the realization of what Andrew was coming home to dawned on me.  Ugg...I had become a woman who no longer felt, looked, or acted like a woman.  I was taking my new role as mommy to a totally unnecessary level.  So yesterday, I showered AND blow dried my hair (gasp!).  And then...I put on real clothes.  Like, a shirt that wasn't used to pin down my children's arms and some khaki shorts.  Big day.  Andrew commented on how nice I looked and I didn't even get to the makeup part of things.  What a complement.  So today, I put on (drum roll please...) a DRESS!  That's right, I am wearing a dress.  It's cotton and quite plain, it's actually comfortable, it has a few drool spots on it, and I am going absolutely no where.  But, I feel like a human being.  And it's wonderful.  My new mission is to get dressed in real people clothes on a regular basis.  Particularly once isolation starts back up and I'm once again confined to these few walls.  It's the little things in life that can bring some sort of healing and semblance of "normal" into the life again.

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!

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.

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!

SAHM

Being a stay at home mom is the hardest job ever.  I have complete new respect for my mom who stayed home with all of us throughout our childhood.  I am realizing how many more times I should have said "Thank you" or let her know I appreciate her and all her sacrifices.

Some days are wonderful and I am in awe of God's goodness and mercy, particularly with all he brought the boys thru in their short lives.  I am so grateful that they survived despite the odds and are active and energetic little boys.  I love that.  I love seeing their smiles, hearing their laughs, watching them learn the little tasks, playing with them, and seeing them grow stronger.  It is really an amazing thing to be there and see the day to day of any child, especially preemies.  But then there are days like today.

Today consisted of feeding, screaming, feeding, errand, feeding, screaming, feeding, screaming, baths, feeding, and screaming.  All day long.  No laughs, no smiles, no special little moments.  It didn't matter what I did - held Warren, rocked him, sang to him, read him a story, walked with him, bounced him, etc.  Nothing mattered.  He just screamed and screamed, swatting his arms and slapping me in the face over and over again.  It is the most frustrating thing in the world, to love a child who seems to hate being with you.  To have a child so incredibly unhappy and not be able to console him.  And we typically have 1 or 2 play times like this a day, and I say the next one will be better.  Today...it never got better. and Andrew had to work super late.  I am trying to transition Dean to his back for sleeping, so he screamed through nap times today too.  I am let feeling completely exhausted nearly 14 hours after the day started with Warren still screaming away in the next room.  With the few moments I had when they were both relatively calm I managed to grab a meal and clean a bathroom.  That's it.  Today, I am mourning the life I once had.  The job I once enjoyed.  The people I once interacted with.  I miss feeling like a productive member of society, stopping by the store on my way home, grabbing coffee with a friend, and reading a good book.  Tomorrow is another day, one which will hopefully and prayerfully involve less screaming and hitting from one little boy.  As I quit writing to go tend to him again, I find myself sighing and feeling utterly conflicted.  The blessings I prayed for consistently for so many years and finally here, home with me as I always dreamed.  And yet, it is so much harder than I thought.  And no matter how hard I work, I feel completely unappreciated by my boys...especially when they don't respond to my efforts.  Or when they respond quicker to Andrew.  Like all my efforts are useless.  I know one day it will get better.  And I have to keep reminding myself that they are essentially 3-month-olds.  Still in that hard stage...

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.