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.
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!

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