Friday, December 12, 2014

Grandpa

Heaven gained a wonderful man last night.  My grandfather went to be with the Lord yesterday evening.  This is the first grandparent I have lost, first family member who I really knew who has passed away.  He has been battle cancer for over 2 years.  He has been in pain.  And how wonderful to think he will never experience pain again.  What a blessing for those who know Christ!

One of his last conversations with my dad, he made a promise.  A promise to look out for Reagan, to be there to support her.  I love thinking that right now, she has his hand in her tiny one and is leading him through her field of purple flowers.  They are chatting about God, heaven, life down here.  I imagine Grandpa telling her some of my childhood stories, of how I gave my parents trouble or ran around collecting bugs, never wanted to come inside, and certainly didn't want to follow the rules.  I can picture Reagan showing Grandpa all she has learned, pointing out the wonders of heaven, dancing for Jesus side by side with him.  It is a tremendous blessing for me to know that my daughter has another great-grandparent in heaven, one on our side, who can tell her more about us.  I love that Grandpa found some peace and purpose in caring for and loving on Reagan until we get there.

Grandpa will be missed terribly.  He was a rock - always encouraging to me.  We lived far away for basically my whole life, but he was always easy to talk to when we were together.  And him and Grandma would just crack us up at these recent weddings as Andrew and I turned into their chauffeur when both my sisters got married.  Who would have thought they were so funny?  It's hard to imagine Grandma without him and my heart just breaks for her.  I cannot imagine the pain of spending 60 years with someone and then losing them in such a way.  It helps to know he is no longer in pain, that he is in a better place, that he is with his own children lost long ago, but it doesn't take away the pain.  I am so thankful we were able to be together this summer, that he was able to meet his two great-grandsons for the first time, that he could dance with us girls at one more wedding.  I'm glad we were able to have a moment to say our goodbyes, to hug each other, and to know that it was only a temporary goodbye.

We love you Grandpa.











Tuesday, December 9, 2014

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!

Monday, December 8, 2014

Au Naturel

Somehow along the way, I've accumulated a whole bunch of friends who do the natural parenting/prolonged breast feeding/cloth diaper/home birth thing.  It's found it somewhat interesting to read the tons of posts, blogs, and articles from them.  It's amazing to me how someone who does the natural parenting thing can post time after time about how their decision is the best, their method is proven, and everything else out there is damaging/dangerous/wrong.  I've avoided blogging about my opinions, actually, because I haven't wanted to offend.  But I've read one offensive post after another, attacking my stance and what I truly believe to be best for my children.

With home births, there seems to be a badge of honor awarded each time, a sense of arrogance surrounding it.  "I did it, and I needed nothing."  I remember receiving a birth announcement once with the necessary naked baby picture on the front and the stats: "Baby Girl blah blah, 8 lb 4 oz, 21 inches, birthed at home."  Like that was a stat, something so significant it needed to be announced to the world.  I'm just imagining "Warren & Dean, 2 lbs, birthed in OR 2 via emergency cesarean" on my cards.  Does that make me less of a mom?  Does it lessen my bond, to have delivered in a hospital much less via c-section (Gasp).  Surely not.

I often wonder what natural parents think of our birth story, how we conceived with the help of twice daily injections and sterile procedures.  How I stayed pregnant with the help of more drugs and hormones running through my body than I could even remember.  How we delivered through surgery, and I had to be sedated toward the end, so I didn't even get to hear Dean cry.  It was hours before I first saw my children, days before I held Warren.  They survived because of breathing tubes, medications, IV feedings, bili lights, and a whole team of people fighting for them.  Now, I'm not going to take God out of the picture at all.  No one knows more than us how little statistics really mean.  With Reagan, everything looked great until she was gone.  With the boys, everything looked awful and we were told they wouldn't survive from the very beginning.  God proved my entire medical team wrong, proved He is bigger.  And I love that that is part of our story.  But, God used each of those physicians, nurses, respiratory therapists, and everyone else to help heal their broken bodies.

After Reagan, I would become so angry when I heard about home births.  It seemed, again, like arrogance to think you would never need any sort of medical treatment, that nothing would ever go wrong.  And maybe I would have thought that before my daughter died.  But along the way I've met people who couldn't get to the hospital in time, whose baby aspirated or had a seizure or just quit breathing. No medical treatment was provided because no skilled treatment or equipment was available.  I know women used to do this all the time at home...but they used to die.  Women died in childbirth, babies died in childbirth.  And to think you are above it all is infuriating to someone who has experienced such loss.  While in the NICU, we saw so many full term babies rushed down because of some unforeseen complication.  Now, most babies were fine.  In a hosptial that size, with as many times as I heard the little chime played, most babies were healthy and stayed in the room, no problem.  But I cannot imagine what it would feel like to be one of those women who were wrong.  I love the idea of natural childbirth - no drugs, just breathing through it and feeling the whole thing.  I may or may not choose that if we have other children.  But you can guarantee I'll be doing it from inside a hospital where medical care is available as needed.

I hear the argument, God is in control.  God's plan is already set.  This is true.  Sometimes it's difficult to understand, sometimes God's plan is not mine (often, actually).  But God has given us an ability to learn, to develop medicine, to treat dysfunction and disease.  The fall brought all this awfulness into the world, but God has given each of us certain abilities, including those who discovered ways to treat infants born prematurely, those who are born with what would have once been a life ending illness.  We would not sit by and watch our child or spouse suffer with a life threatening illness and do nothing, stating that this must be God's will.

Some things are a personal choice - breastfeeding vs formula feeding, cloth diapers vs disposables, co sleeping vs baby in a nursery (though baby in your bed is not safe).  We chose one side of each of those because we firmly believed it was best for our family.  I would make the same decisions again.  However, we should not make the other side feel guilty.  I see this most with breastfeeding, something women have become very outspoken about in recent years.  I breastfed my twins and, minus the last 2 weeks in the NICU to get Warren home, they never had a drop of formula.  They are still getting breastmilk at most meals from our freezer stash.  However, formula feeding isn't wrong.  It is perfectly acceptable.  You can still bond with your child.  It's not always a selfish decision.  For me, in the beginning, breastfeeding was the opposite of bonding.  It was awful.  I hated every second.  And we thought many times about quitting and switching to formula, getting Andrew more involved, and taking the stress out of my day.  I felt such guilt over that though, as it was the only thing I could do for them for so long while they were in the NICU.  So we continued.

I do not write this to offend people or to state that I am absolutely right and they are wrong.  We all make decisions because we think we are doing what is best.  I do not know anyone who makes a decision because they think it will harm their child.  But from someone who has seen the ugly side of birth, I encourage all of my "natural" friends to simply consider using your birthing plan in a hospital.   And to not bash those who chose differently.  And to stop posting articles/pictures/blogs about how wonderful breastfeeding is to the detriment of those who chose another option.  We are all learning, all trying to do best by our children.  And we need to support each other.

Tuesday, November 18, 2014

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.

Monday, November 3, 2014

Birthday Weekend Celebration

We have really enjoyed a wonderful weekend away with the boys, celebrating Reagan's short life and the joy she has brought us.  The weather didn't cooperate quite like we were expecting but the snow did hold off until late on Friday.  We enjoyed a beautiful drive through the mountains with every color imaginable on the mountainside - gorgeous fall leaves of red, orange, and gold.  It was breathtaking.  I would never have known a) that it was so cold outside and b) that we were hours away from snowfall.

We started our time in Blowing Rock with a balloon release, picnic lunch, and temper tantrums.





Once the bellies were full, we headed into town for the traditional trip to Kilwins.  I purchased a chunk of the best fudge ever.  Andrew bought ice cream (yes, it was in the 40s outside, and yes, he ate it all).  This allowed the boys to have their very first EVER taste of ice cream.  Nothing but the best for my babies!  And they LOVED it, signing "more" after each bite.  And then there were the temper tantrums once Mommy said all done.  Poor little guys, couldn't understand why they couldn't have more of such a good thing.  Tough life lessons learned at a young age.


Early Saturday morning, we woke to beautiful, freshly-fallen snow.  We briefly let the boys play outside and captured a glimpse of the pure joy on Warren's face.  Such a blessing to raise these boys!

And then we thought, we're so close, why not head to Sky Top for some apple cider donuts??  No line today!  And, to continue the weekend of spoiling our boys all-natural, sugar-free diet, we thought we'd give them a taste.  Yummy!


Ok, so Warren definitely shows off when a camera is around.  Most of the time.  And we get those adorable, dimpled grins.  Dean, well, he's less photogenic (though equally as cute in person) and with Dean, what you see is what you get.  So, that's him enjoying his mouthful of donut in a less-cute though more realistic fashion.  Just so you don't think Warren is always making that angelic face, in the spirit of fairness...




Friday, October 31, 2014

Happy 2nd Birthday

Reagan,

Happy birthday my love!  You are turning two today - two!  It sounds so big to me, especially as I look at your younger brothers.  And the time has just passed in a blur.  But, forever in my mind, always easy for me to picture, is your precious little face.  Exactly as you looked 2 years ago.

The day you were born was difficult to say the least, full of uncertainty and pain.  But, oh the joy.  I remember distinctly my heart doing this little flutter when I first laid eyes on you.  I still remember those eyelashes, those peaceful eyes, and of course the pouty lips.  We often think you would have looked so much like Dean.  I can picture your smile, your blonde curly hair bouncing as you run through heaven.  I am so sad I am not there to celebrate with you today, but I know you are having an absolute blast.  I can't wait to see what birthdays are like in heaven - what kind of wonderful gifts you receive, what you get to learn and experience, and how special it must be to get hugs and kisses from your Heavenly Father.  You are one lucky little girl!

Knowing that, knowing how vibrant and full your life is, makes things so much easier for us.  Though I would still chose things differently, I know with confidence your life was meant for eternity.  And that brings me immeasurable peace.  So, the four of us are celebrating your birthday as much as we can down here.  We're visiting the last happy place you went - Blowing Rock.  We absolutely love it and are glad we are not house bound this year.  We have purple balloons (of course) to send up to you.  Mommy made you the most delicious strawberry cupcakes (with super yummy buttercream frosting, from scratch!).  Your brothers even made you cards and did the coloring all by themselves.  They're very special, and we'll put them in your memory box for safe keeping.  We'll watch the videos of you dancing away tonight.  And though it always makes us cry, it reminds us of how happy you were.  It reminds us you have only known love and there was no suffering in your life.

We are so incredibly proud to be your parents, to know how much your life has touched others.  We are so thankful God is using you and your precious time here on earth to change others, to change us most of all.  We love you so very much, Reagan.  So much.  Not a day goes by that we don't miss you, and we can't wait to see you again!

Happy second birthday, Rea Rea!!  Mommy and Daddy love you always!

Thursday, October 30, 2014

Anticipation

The anticipation of Reagan's birthday was so much harder last year than her actual birthday.  I am praying that is the case again this year.  Two years ago today I was relatively carefree in my pregnancy.  I went about my work day normally and stopped in for a check-up on my way home.  Two years ago today I saw the image that is still burned in my mind, forever in my mind.  Reagan's empty chest.  The place where, just the week before, her heart had been fluttering away.  The sense of disbelief, shock, horror.  And the overwhelming, crushing guilt.  That I had done something wrong, missed something I should have picked up on.  A mother should know her child, should know if something was wrong.  I didn't have a clue.  How could I be that out of touch?  How could I have missed something so profound?

October 30, for me, is much harder of a day.  This is the anniversary of all things awful, of the pain and emptiness.  Today marks 2 years since my world forever changed.  Today, immersing myself in planning for Reagan's Garden, getting ready for her birthday, packing for our trip, well, it's not enough.  I can't get that image out of my mind, can't wrap my head around it all.  Two years later, I still don't have answers to my why questions.  I still don't understand why some have it so easy and others don't, why some children die and others don't.  So, I'm going back to the one place I can find rest: Christ.  I am leaning heavily on Him today to carry me through, to remind me constantly that Reagan is loved and cared for.  That He is giving her all the hugs and kisses she needs until I can join her.  I'm back outside with my tea, Reagan's newly planted garden, basking in the warm of the early morning sun, and reading about heaven.  Trying again to grasp all my baby girl is doing and learning and loving. Trying not to let myself break again that she is doing all that without me, because I will have all of eternity to catch up.

Tuesday, October 21, 2014

Pre-isolation outings

So, we've been in lock down for 3 weeks, 3 weeks that I've been saying to myself "I really need to put up the pictures of all the things we did in September."  And then, as any mom knows, life gets away from you.  So here I am, waiting for about 50 people to call me back for things dealing with Reagan's Garden, not feeling like doing the cleaning that so desperately needs to be done, and I thought...why not now?

We ended our summer with some great trips.  Over Labor Day, we visited with dear friends from FL and all vacationed together with our 9 kids.  Yeah, 9 kids, 3 sets of twins.  We had a few hours of "vacation" each day, typically everything after 7:30.  But seriously, it was a wonderful time to catch up, to ask the hard questions, and to laugh.  It was so uplifting to see kids a year or two older than our boys doing things like listening and actually understanding, laughing and playing together.  Gives me so much to look forward to!

We also visited the lake, taking the boys out on the boat and riding around, which they really seemed to enjoy.  The boat is a whole new thing to explore.  And it has buttons and snaps, which seem to keep these boys busy for hours.  We all four went tubing.  I can't really say it was an enjoyable experience...there was much screaming and whining.  But those life jackets did look super uncomfortable, so I can't say I blame them.  

And our last trip of September was back for a Clemson game.  I tried to teach the boys Go Tigers! for their first words...no such luck.  They'll have it down by next year though.  They absolutely loved tailgating - exploring the great outdoors, eating some dirt, playing with rocks and leaves.  What more could a little boy ask for??  


It was a little less relaxing than our typical tailgates, constantly watching to make sure Warren and Dean didn't get around any of the kids with colds, but it was so wonderful to see old friends again.  So much has changed in the past two years with the dynamics of our group!


Family Photo - Solid Orange

Poor Wyatt, such a trooper!  Boys first experience "horseback" riding


And of course, on our way home, we took the boys apple picking.  They did a great job hanging out in their strollers, getting down to pick a few apples, and munching on them as we headed back up.  Warren drank something for the first time in over 2 months, an apple cider slushie.  He loved it!  And proved to us all that it is not the mechanics of drinking that is the problem, it's his strong stubborn will!  
Warren

Dean




Wednesday, October 15, 2014

October 15



Today is national Pregnancy and Infant Loss Awareness Day.  Two years ago, it was simply October 15.  I never knew there was such a day to remember babies gone too soon.  I would have thought most people wouldn't either.  But here's the thing, 1 in 4 pregnancies don't make it.  ONE in FOUR.  That is such a huge number that I think most of us have been touched in some way or another by loss.  Often these are early miscarriages, which for some reason most people don't talk about.  Maybe it's easier to hide the pain?  Maybe it's awkward to mention the miscarriage before you've told anyone about the pregnancy.  Our whole world knew we were doing IVF beforehand and I had countless people messaging me to find out if we were pregnant before we even knew ourselves so I never got to keep pregnancy a secret.  (Though I realize we are not at all the norm!)  For all our friends who have gone through miscarriage, I am so sorry.  I'm sorry you lost a child too.  I'm heartbroken you did not get to fulfill the dreams you had for your child from the moment you learned of his/her existence.  And I'm sorry you did not get an opportunity to hold them.  I would have once thought that would have been easier, to lose a child earlier in the pregnancy.  I now know that it is just different.

  Today, on October 15, we remember Reagan and our time with her, those precious hours we got to spend holding her.  We are honoring her memory today by launching Reagan's Garden to help provide support to other families who have experienced similar loss.  We'll be participating in the balloon release tonight, along with thousands of others across the country.  What a beautiful way to remember those we have lost.  We each will get a purple balloon and let it fly.  But this year, we'll also release a blue balloon for Reagan's twin and her cousin, who are playing in heaven with her now.  Their lives were so incredibly brief, but no less significant.  They don't get a birthday to celebrate.  We have no memories to recall.  But today, we honor them too.


The national balloon release occurs at 7PM, no matter your time zone.  This helps to create a continuous wave of balloons released across the country.  However, because it's nearly dark here at that time and our boys are typically in bed, we'll be releasing at 6PM.  We'd love for any and all to join us!  If you do, please send me and email or post the picture to Reagan's Garden FB page.  I'd love to put a collection together!

Tuesday, October 14, 2014

Reagan's Garden

So many people after Reagan was born asked us how they could help.  What could they do?  For the past two years, my answer has always been "nothing."  There was no tangible way of helping us, of honoring Reagan. Our hearts ached for other families going through the same loss, parents not able to bring their children home, but we had no way of helping them either.  We've prayed about it, and God has answered our prayers.  And now we'd like to ask you for your support...to physically give of your time, resources, and talents.

Andrew and I have talked about how we can support families experiencing infant loss and increase awareness of stillbirth and prematurity once we were thrust into both of these situations.  We felt extremely isolated and confused in both situations in two very different ways.  Since leaving the NICU, we have learned of several support options available to families during their NICU stay and a few other amazing projects being launched now.  However, infant loss support is still sorely lacking.  After talking with several people and spending much time in prayer, we are moving forward with the launch of Reagan's Garden.  We are have been so blessed by Reagan's short life and how God has used that to mold and shape us into different people.  We are excited to see where God will take this and our desire to support families in Charlotte experiencing infant loss.  The "about us" appears below, but check out our website here!  Please consider donating to support the families in our region, offering artistic talents to help us make cards, or helping us assemble boxes to deliver to women who lose babies in the NICU.


When a woman delivers a healthy child, she receives flowers and balloons.  Ribbons announcing name and weight are placed on the door.  Balloons are hung on the mailbox.  And a never ending, revolving door of visitors arrive bringing food, flowers, and congratulations.  But when your child is born not breathing, when your child will only live a few minutes to a few hours, there is silence.  No one knows how to respond, whether to call or not, what to say.  It is for this very reason we started Reagan’s Garden.

Reagan’s Garden is a non-profit fund through Novant Health Foundaition that provides tangible support to families in the Charlotte, NC region who will not be bringing their child home.  The child may be born not breathing, may pass away during or immediately after delivery, or may pass away in the NICU.  Each family is sent beautiful flowers and a handmade card.  It’s not much, it does not take away their grief, but it provides encouragement and a beautiful reminder that their baby is just that…their child.  Our daughter, Reagan Catherine, was stillborn in October 2012.  It was the hardest and most difficult thing we ever experienced, a pain no one understands unless they have been there too.  And yet, holding your child, you are still filled with a love, you still want to celebrate their life, however brief.  Reagan’s Garden hopes to encourage parents in labor and recovery to do just that, to take in every second you have with your child.  It is our mission to ensure each mother, no matter their circumstances or support network, receives a bouquet and card for their hospital room, a tiny but tangible gift to remind them their child matters and should be celebrated.

Infants born prematurely or with complications face a potentially extensive NICU time.  For us, this ended after 3 months with 2 baby boys at home.  Not everyone has experience and not everyone will be bringing their child home.  Reagan’s Garden also seeks to send these families flowers and a decorated box providing encouragement and Biblical hope.

Infant loss is devastating, but we were not made to go through this journey alone. Reagan’s Garden hopes to hold regular support dinners in Charlotte to unite parents with a network of people to talk with.  These informal gatherings will provide a safe place for parents to talk about their children with those who have walked a similar journey, celebrating the moments we had with our children, and grieving all we will miss.  Our goal is that no one would feel alone or isolated after loss.






Wednesday, October 1, 2014

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.

Monday, September 29, 2014

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.

Monday, September 22, 2014

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!





Thursday, September 18, 2014

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 3rd 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!

Saturday, September 13, 2014

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!



Friday, September 12, 2014

Hernia Free!



Warren's surgery went amazingly well.  What a great God we serve!  I met with the anesthesiologist several weeks before the surgery, and he discussed with me numerous complications from general anesthesia...especially with my history.  Because of that, we were to expect Warren to need to spend the night.  His plan was to administer general anesthesia thru the IV after Warren had been sedated and monitor his breathing to determine need for any breathing assistance if he was unable to maintain his oxygen/HR.

Well, we pushed Warren's surgery back a few weeks, so we had a different anesthesiologist.  After reviewing Warren's history and our family history of allergic reactions to anesthesia, he opted for a different route.  He sedated Warren as planned, and then immediately put him on a ventilator.  This ensured Warren's oxygen and breathing would remain normal and prevented any need for emergency intubation mid-procedure.  He also chose not to use general anesthesia at all, but to do an epidural.  Warren was awake from the surgery by the time Andrew spoke to the doctor and made his way back to the recovery room.  He was awake and feisty!  After refusing his bottle, which I was a little surprised since it had been over 10 hours since he'd had any food, he gulped down some applesauce.  He kept it down no problem and was released before 10AM.  That's right, less than 3 hours after surgery started and he was on his way home!  Praise God he did not have to stay in the hospital the full 23 hours, didn't have to be entertained in that little room while trying to keep him from putting any number of potentially contaminated items in his mouth.  And here he is, looking mighty cute in his hospital gown.


The great thing about having the first surgery in the morning is that it is over relatively early as well.  By the time Dean finished his morning oatmeal, Andrew had already called to report everything went as planned.  And by the time Dean woke from his morning nap, he was reunited with brother!  Dean was a bit lost without Warren here, wandering aimlessly around upstairs, not quite playing with anything, a bit unsure.  Love that, how much they need each other already, even though they won't play together yet.  God kept my weak heart fairly strong during the whole process, really right up until those final few minutes when I began to wonder why Andrew hadn't called yet.  But, once again, God carried us through.  And Warren is loving being home, playing alongside brother, and dancing to a little Under the Sea with Aerial.  (which is so super cute...if the video I took wasn't about 5 minutes long I might think about posting that)

Thursday, September 11, 2014

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!

Sunday, September 7, 2014

Life with Toddlers

Time has gotten away from me as it has been SO long since I've been able to sit down and write.  These boys are sure keeping me busy!  They have such huge appetites I feel like I am cooking for them or feeding them all day long!  What a huge blessing, as we know so many micro preemies who have such difficulty with feeding.  Though we are still not able to drink from any form of cup/sippy cup/straw, I consider that to be so very minimal.

Both Warren and Dean are walking everywhere, climbing stairs, and getting in to EVERYTHING.  And once they find it, straight into the mouth.  Every toy, electronic device, ink pen, shoe, leave, and crumb must be tasted to make sure it's okay.  I remember when they were about 5-6 months old and not yet bringing hands to their mouth and how concerned we all were that they wouldn't have this oral learning stage.  Oh, how wrong we were!  I love watching them explore and learn, but I will be so excited to have this oral stage over so we can actually play outside.  Yesterday I had to pull a dead, dried worm out of Dean's mouth.  So gross.

Baby-proofing takes on a whole new level once children can climb.  Here's our week in review:




Yeah, I think that about sums it up!  I notice one particular face a little more often than the other...hmm...  Oh Dean, how many trips to the ER will we have with you during your childhood??  I've got to say, it is such a relief that Warren takes a few seconds to determine if the risk is worth the reward before jumping.  Dean, not so much.  Though they are clearly already working together to give me a heart attack.  "Don't worry brother, I'll shut the gate behind you.  Then Mom will never know!"  

But, what joy there is to see all these moments.  To know that our boys are thriving, walking, exploring, and wanting to learn.  We didn't know if they would survive in the womb, studied and poured over all the statistics as they reached each new week, trying to get as close to 28 weeks as we could for them to have the best outcomes.  I was prepared for surgeries, brain bleeds, delays, etc.  And yet, God continues to defy the odds as our little miracles move closer to catching up.  

Friday, August 15, 2014

The art of saying "no"

We are now on the move!  Dean's been walking for 1.5 months, confidently these past several weeks.  He no longer crawls much at all.  And he is FAST!  Warren is now following right along, walking further and faster than ever.  With all this mobility comes a word I am repeating more and more frequently: "no".  No, you can't play in the toilet.  No, you can't beat on the fireplace screen.  No, you can't pull out the wine bottles.  No, you can't eat the kitty food.  No, you can't drink the kitty water.  No, you can't pull out the kitty's tooth...oh wait, too late.  Oops...

Keeping track of where these boys are, these eager to explore boys, is such a blessed challenge.  I love that they are mobile, eager to explore, curious minded.  I hate the disciplining that comes with their new-found freedom.  I hate not knowing, especially with Warren's speech delays, what exactly they are understanding.  Do they think it's a new game we play?  And how can I say no with a serious face when Warren turns to look at me, smiles so big, and does a nice slow-motion clap??  (It's the cutest thing ever, by the way)

I'm trying to learn how to best express the dangers (choking, drowning, suffocation, burning, etc) that comes along with each "no."  But most of the time, I feel like a party pooper.  I know they aren't being defiant (most of the time) and that they really just want to see it, look at it, explore it (with their mouths!).  And, again, it's such a joy to watch them figure all this out.  But, at the end of the day, I feel as though a huge percent was spent trying to contain them, telling them no, waiting out the temper tantrum that follows, and then moving on to the next potentially dangerous activity.  Teaching your children no is such an art, one I have clearly not mastered yet.  The good news??  I am sure to get many more years of practice!

Wednesday, August 13, 2014

Anger

Some days are just hard. Anymore, most days are hard, but some days are harder. I am only beginning to realize how much anger I have buried down deep. Here I am, closing in on 2 years later, and I just want to scream "why?!?"  Why is life so hard?  Why is our world so broken? Why do some people endure such heartache and loss while others move along, blissfully unaware of the hurt around them? I don't get it. It isn't fair. Or just. And it makes me question everything that has held me together in these past months. When does the agony end? How are God's plans greater than mine?  I don't see his sovereignty right now. Or his goodness. I am completely overwhelmed by it all.

And yet, I KNOW it to be true. I know I cannot rely on my emotions, which are fleeting and fickle. I have experienced first hand the glimmer of peace and hope that come from knowing Jesus. I know my suffering and the suffering of those around me is due to our broken world, a product of sin. It doesn't make it easier in these late hours when I can't seem to sleep, it doesn't make me feel better, but one day it will. One day it will all be better. But today? Today I'm allowing myself a few hours of anger before I have to pull it together for my children. Today, I'm allowing myself a moment to feel selfish and I grieve the loss of my dreams and plans.  Tomorrow is another day.

Tuesday, August 12, 2014

Job offer and some art

Today was filled with temper tantrums and a complete lack of naps.  I think my boys know when their daddy will be home late and play that little game with me.  I was feeling exhausted, frustrated, and like nothing I was doing was making a bit of difference.  Sigh.  And then, I open my email to see a job offer sitting there from my very first professional mentor, a man who helped me fall in love with my profession.  It was the first time I saw real PT - not a series of exercises, but skilled, hands-on treatment.  I saw how he cared for his patients, got to know them, laughed with them.  And I was there in the beginning when he started his practice.  And now, 12 years later, he's offering me a position to come back.  Hmm...how tempting.  To feel like a productive member of society.  I chose not to do pediatric therapy because it takes so long before a visual improvement is noted.  And the same is true with all our home therapy sessions each week - does it really make a difference?  Do I really make a difference?  Would they notice if someone else watched them?

So, I sigh, and walk back into the kitchen, and see this hanging on my fridge:

Our very first art project.  And I know, I can't leave them.  Not for anything full time.  Not even for a 20-hour part time position.  Nope, this is where I belong.

I love how each picture so perfectly describes my children and their personalities.  At the top, we have Warren: meticulous, controlled, planned.  Each paint dab is carefully placed, perfectly round, well spaced.  He thinks, then he does.  In the middle, we have Dean.  Erratic, energized, and all over the place.  Some dots are smeared, some misshapen.  There is no order or plan, dots are clustered together, and you can just see the energy he put into it.  Not to mention all the paint dots on his arms and face as he was experimenting with it.  And then, at the bottom, we have Reagan (thanks to a very sweet 8-year-old boy whose heart is full of Jesus for drawing it for us).  Beautifully drawn purple butterfly, full of color and joy, perfectly controlled.  I love these pictures and how they speak of all 3 of my children.  I am so blessed one of my Hope Mommies thought of me and the empty fridge/lack of artwork I would have for Reagan and filled that void long before Warren and Dean were ready to make anything.