A look back...

I am sitting on the floor upstairs surrounded by Laynie's scrapbooks and caringbridge notes, not knowing where to begin.  It is my baby's birthday.  What do I want to remember?  What do I want to 'feel' today?  I am a stuffer by most people's definition.  One who can rise up in the midst of a challenge and remain strong, one who can stuff all the emotions aside and get through whatever I have to.  Not a worrier unless it is necessary.  But with that also comes the vulnerability of when I will allow myself to feel all the emotions that go along with the challenge.  And today is one of them.  I have told myself that I have to face it at least once a year on this day.  I will never forget Laynie, never.  But, not many days do I allow myself to truly remember all that went on during her life.  It is just too hard. 

As I turn open the first page of her book, my heart skips a beat.  Her hospital picture.  I remember the day we went to the hospital to pick her up.  We had previously been matched with a birthmother in the Peoria prison who was due with a baby boy.  We had all the major necessities for an infant and a room set up for a boy.  But, God had another plan.  One we could never have imagined.  He closed the door on that adoption the day Laynie was born.  I remember questioned why?  Why God is this happening again?  Do you not want me to be a mother?  What is my purpose here?  I was broken, fully surrendered to God, completely flat on my stomach heaving with sobs on what the future was going to hold.  At that point, I was mentally, physically, and emotionally exhausted.  After years of failed IVF cycles and failed adoption stories I was done.  It was at that moment in my life that I once again felt God's hand over me.  Through all my tears there was a silent strength that He had given me - "My grace is sufficient, His grace made perfect in my weakness."  I knew that God was in control and knew that nothing I would never understand why so I should stop asking and instead listen, listen to His small still voice.  I knew that I had to stop trying to orchestrate things in my life to go the way I thought they should go and instead give it all completely to God, and I did.  And not more than a minute later, our phone was ringing with the call about Laynie.

I remember still being downstairs recovering from my 'revelation' of sorts and Tadd running to me saying, "you want to be a mom?" and thinking "really hon, you have to ask? that isn't even funny!"  We were told a baby girl was born at Methodist Hospital in Peoria and if we were open to it we could pick her up the next day. 

  I remember my mom and I rushing to Target and loading a cart with bottles, formula, diapers, pacifiers, onesies, monitors, and every other baby item you could think of.  I think the cashier thought I was crazy.  I am sure the beaming smile on my face gave away any doubts that I was sane.  I was going to pick up our baby...Our baby.  Was that day finally here?  Or would be greatest fear take place, getting so close and it not happen.  Faith, it was all about faith and knowing that God was sovereign over all things I kept telling myself.  Faith no matter what happened, good or bad.

Flipping forward a few more pages in her scrapbook - the moment we got to hold Laynie.  She was such a tiny peanut.  6 lb. 6 oz. perfect in every way. I remember nurses commenting how cute she was and how tiny her features were.  The joy that flowed out of my heart was indescribable.  I know that I cannot compare it to being a mother by birth, having that child grow inside me for nine months.  But the love and joy I felt that moment I held Laynie was nothing short of what I would have felt for a child I gave birth to.  I was amazed at how protective I felt over her.  And how I wanted to shout from the rooftops that I was a mother at last, and only by God's grace and this amazing gift from her birthmom could that have ever happened. 

When we got home there was a flood of friends and family over to visit.  I honestly don't remember much about those two weeks.  Besides that I was on cloud nine and could not have been happier.  I loved seeing the baby items around the house, bottles in the kitchen sink, baby blankets thrown around the house.  Life was good.  God was faithful and everything was right how it should be...in my perfect world..

I had no idea that in just fourteen days from arriving home my world was going to come caving down.  The security net I had once again thought I was in, my world, my ideas...can you see where I went wrong?  Because I was not in control.  I am not in control or will I ever be.  God's plan was different from mine.  He had a different agenda for why Laynie was allowed to live with us here on this earth. 

Now looking back I see how God was preparing my heart through all the trials up till then of being told I would never have children of my own to going through countless failed IVF rounds and shots to being lied to from a birthmom about adopting her child.  God was putting me through the fire so that I could get ready for the greater plan He had for me, to care for Laynie those short 9 months. 

Many ask how we made it through those times of being in the hospital or caring for Laynie.  Prayer.  God's grace.  The support from church, family, and friends.  It is during these trials that God starts to work in people's hearts.  Some people who we never even knew.  And that only could have happened by God. 

I got to share my first mother's day with Laynie.  I used to dread the holiday in the past.  It seemed to point out what I already knew, I wasn't one.  And even if I was at peace about that fact, Satan loved to stir up discontentment and make me question what I knew was true.  So on May 13, 2007...I soaked in every minute of that Mother's day. 

Two days later, I was in the hospital singing "Jesus Loves Me" to my daughter who was getting an echo done to confirm that indeed she had hypoplastic left heart syndrome.  Instead of sitting at home rocking her, I was forced to stand by her side unable to console her cries as doctors hurried to assess the situation.  All I could do was grasp her small finger in mine and sing into her ear as soothingly as I could the sweet words - Jesus Loves me this I know, for the Bible tells me so, Little ones to Him belong, They are weak, but He is STRONG!  That song haunts me a little now.  As time goes on I can sing it.  But for the longest time all that was associated it was the first day we found out Laynie was sick.  Things were such a blur.  What was meant to be a routine two-week appointment went from worse to emergent.  Phone calls were made and we were sent to OSF.  I remember Tadd sitting on the chair outside of her room during the echo, sick.  Physically sick at what was happening. 

The moments after that were ones of shock and awe.  We were told that Laynie had hypoplastic left heart syndrome, transposition of the great arteries, coarctation of the aorta, and a VSD.  It is almost laughable now to think that we had no clue what that meant.  We weren't parents who were given this diagnosis during pregnancy and could get information on what this all meant.  I remember asking nurses and doctors around us what was wrong with Laynie. No one would respond, but you could see it in their faces.  They knew what was involved in our future...the surgeries, the recovery, and the long days ahead.  She would need 3 surgeries - 1 right away, 1 when she was 4-6 months old, and the last one around age 3.  I remember thinking, no biggie.  She is a fighter and we can do this. 

I remember having to tell all of our family and friends.  Most of all I remember my mom saying, you need to call her birthmom.  How was I going to do that?  We had only talked for an hour or less the day we came to get Laynie and now I was supposed to call and tell her that it was a miracle her child hadn't died at our home and would need surgery, at least 3 in the future?  I dreaded it...  I don't remember exactly how I told her, but I do remember the shock I could hear in M's voice as she took in the news.  I felt horrible.  I loved this woman as well and knew that she would have no support that instant as she heard the news.  I prayed that God would bring someone close to comfort her and thanked Him that we had such a strong support system through it all. 

A few days before surgery she had been given meds to paralyze her and she was on a vent.  Nothing really prepares you to see a baby so little with that many lines and machines hooked up to them.  She was so tiny, so fragile.  Although Laynie was a fighter.  She had quite the grip when you held her finger as though she was feeling the same, she didn't want to let go.  I remember Tadd and his constant prompting to the surgeon - "is this like a walk in the park for you?"  And Dr. Fortuna's response of, "not a walk in the park, but I do a lot of these surgeries"

Laynie had her first surgery that Friday, 3 days after her diagnosis.  It lasted from 7:30am-4:47pm.  A long day.  We all gathered in the ICU waiting room.  Both Tadd and my parents were there supporting us with prayers and well wishes the whole time.  The hours seemed to drag on until at last,  we could go back and see her.  Fresh out of surgery she was quite a sight, but I remember thinking how good she looked.  Ha!  Makes me smile now.  I think I was just so glad to have her by me again.  To be able to touch her.  Anywhere a wire or IV wasn't plugged in, that is where I would touch her.  So she could know that her mama was right there by her to help her through. 

Days in the hospital start to run together.  However the day I got to hold her again was priceless.  Her ART line was taken out on May 30th and I finally got to hold her again.  To feel her body next to mine...ahh, heaven on earth.  Still to this day my best memories are feeling her body next to mine.  To feel her breath against my neck as I held her against my chest. 

We were almost to the point of bringing her home after that first surgery and then got some bad news. Her coarctation was worse than they thought and she needed to go into open heart surgery again.  That is kind of how hospital visits were...draining.  Just as you would think you couldn't muster up anymore strength, that the end was in sight, it wasn't.  Days were spent learning how to care for Laynie.  I wanted to do as much as I could.  During some of the beginning days they wouldn't even let me hold her and only the nurses got to when they rolled her in her bed to one side or the other.  So after awhile I would use any excuse to just touch the small part of her back as she got rolled to one side.  I used to put bows in her hair or give her a new pair of booties.  Anything to make the stay seem more normal.  As though she was still a little baby.  I remember mourning the fact that I was losing all this precious time with her while we were stuck in a hospital.  Other parents were at home snuggling with their babies, taking outings with them, and seeing friends.  The hospital life was our norm and we made the best of it.

Laynie was discharged on June 22nd for the first time.  Then began our life at home.  I got to have a baby shower for the first time.  Soaked in every precious moment.  The things you long for as a first time mom, I still got to experience but in just a little different order.  Life was good.  Tadd and I got into a new routine with feedings, medications, and everything that went with it.  We continued to praise God for His faithfulness at providing for our family and each minute that we got to spend with each other.  I made it my goal to try to have a positive attitude and try to do everything the same as I would with a child who didn't have special needs. 

The peace at home was short lived because by August 14th Laynie was back in the hospital for open heart surgery again due to her coarctation issues.  We were used to the surgery steps at this point and could better prepare ourselves for what was to come in the next few days.   Days in the hospital seemed to bring highs and lows.  By this point I had learned to somewhat read the monitors and know her medications better and what they were for.  I was by no means a nurse or doctor, but the best advocate for my little girl I felt.  There were days I wished I didn't know what was going on because it was like I would hold my breath as her stats went down or cheer as they improved.  To say it was tiring would be an understatement.  We got to leave two weeks later though and we were thrilled. 

Once home we were dealing with drug withdrawal and fussiness issues.  The stress of an infant with hypoplastic left heart syndrome is that they were not supposed to cry because their heart could get stressed out and then their oxygen stats could drop rapidly.  In other words if they were crying for longer than 5 minutes you could have serious issues.  This doesn't really help parents that are lacking on sleep themselves and dealing with a baby who is going through withdrawal symptoms.  I remember calling my mom one morning trying to wait until 1 or 3 am before I called.  I couldn't console Laynie and hadn't had much sleep.  I was frantic and worried she was going to crash.  Tadd had tried to comfort her to no avail either.  So I finally got in the car and headed to my mom's where I pleaded for just one straight hour of sleep so I could continue on.  My mom instantly stepped in and took over.  Without a doubt I know that God knew our family could handle Laynie.  With the support of our families and friends - we made it.  There were so many times I remember thinking, if I was a single mom how would I be doing this?  The answer was simple...I couldn't!  I am not saying that Laynie's birthmom couldn't have taken good care of Laynie, but I know that all of our support and prayers from those around us literally carried us through so many days and nights.

Laynie's next months until Christmas were filled with trips in and out of the hospital due to eating issues.  We spent another week in early September due to esophagitis and came home with a TPT (feeding tube) in.  On September 21st she got admitted again due to having trouble eating again.  She ended up needing a G-tube so she had surgery on October 4th and by the 9th we were discharged. 

October through December were our happiest times.  I struggle with trying to think of memories that are not hospital related.  So many times I am quick to relive a bad night at home or a bad day at the hospital before I can relive a day of laughter.  We did get to enjoy the holidays with our family though.  Laynie was getting plump thanks to her G-tube and getting better nourishment.  We had her pictures taken.  Looking at them now brings a smile to my face.  Her crazy hair that shot out in all directions.  Her pudgy little cheeks.  By December she was starting to try cereal and baby food.  We got to enjoy family Christmases and were starting to actually make plans for the future.  All the while we knew she would need her second stage surgery soon, but it was supposed to be the least complicated out of the three so we were hopeful we would be in for a week and then home to enjoy life together.

We waited until Jan 7th to go to the hospital for her next surgery.  The surgeons convinced us to enjoy the holidays and then come in for surgery.  I remember I was just so eager to get it done and over with.  I didn't want it hovering over us.  I just wanted to move on with life.  Laynie had surgery on the 9th.  The next couple weeks once again are a little bit of a blur.  We had begun our hospital routine.  By this time Tadd and I both knew how we could cope the best.  I would stay at a nearby hotel while Laynie was admitted.  It got to be where I couldn't be at home if Laynie wasn't there.  The stillness of the house would haunt me.  My mom would take turns and come sit with me or Laynie at the hospital and then evenings were spent with Tadd and visitors.  The hospital had turned into somewhat of our second home.  We got to know the staff so well, they were like family.  We knew where all the good places to eat or find snacks were.  We knew where a shower was if we needed to take one (this was prior to the new OSF of course where they are in your rooms now). 

I pause as I realize we are up to the last few weeks of her life.  Some details seem blurry, others as vivid as though they just took place.  And the 10th was one of the terrifying memories...

I was sitting in the corner of the room working on Laynie's scrapbook on a hospital rolling table.  I could see Laynie off to the right in front of me.  They had her paralyzed since the surgery in order to try to get better blood flow amongst other things.  I remember watching her monitors and thinking things were looking a little different every once in a while, like a funky heart beat, but her stats were fine so I told myself to relax.  In the afternoon around 3:49pm Laynie's heart stopped beating.  Her alarms went off and within seconds the nurses were yelling and my table full of scrapbook supplies was thrown to the side as they rushed to get to her bedside.  Her heart only stopped for 6 seconds, but those 6 seconds felt like an eternity.  I remember being completely frozen.  After all the commotion had subsided one of the nurses pulled me aside and I remember her shaking me and holding my face in her hands telling me, "She is fine, Jill.  She is fine now, don't worry she is fine"  Then I collapsed.  I had to sit down on a chair as the tears flowed.  It was the first time I felt as though I was going to lose her.  And I wasn't ready.  I remember praying to God that she could be OK that I could have some more time because I wasn't ready to let her go.   

The pages in her book ahead show the regular hospital things.  But, I am still smiling.  Tadd and I by her bedside smiling.  By God's grace we could smile.  Because we knew he was in control and although we were scared and unsure of the future we knew that God had a plan.  That He had our best intentions in mind.  Ways to grow us and mold us into better servants for His kingdom.  Ways to teach us compassion for others. 

God granted me a couple weeks after that incident before He decided to take Laynie home.  She had gotten an infection where they had to pack ice bags around her whole body to cool her off, she was septic, and ended up having to be put on ECMO on January 22nd.  We still had hope.  Hope that God was going to change this outcome and heal Laynie.  We had so many people praying for a miracle.  And yet our prayer was mostly that we would not have to make any hard decisions.  Decisions to take Laynie off life support.  We didn't want the anguish or guilt, we wanted peace.  The perfect peace that God grants.  The serene feeling you get knowing that you are in God's perfect will.  And God answered our prayers.  On Feb. 1st Laynie had a massive intracranial hemorrhage where she was pronounced brain dead.  God had spared us the agonizing decisions.  Of course, that is not the answer I would have preferred.  That would have been to take my daughter home with me.  Hold her in my arms and go back to my life as I saw it.   But I am not in control. 

Instead here I was sitting in the cold plastic rocking chair in a hospital bed waiting to hold my daughter for the last time.  As I sat there waiting for them to pass her to me I went into waves of no feeling at all, gut wrenching body shaking cries of horror, and back to quiet pleading sobs....They asked me how I wanted to hold her.  I wanted to hold her free of wires, free of tubes...just as God made her.  I wanted to feel the warmth of her body against mine one last time.  This moment is one I will never forget, one that holds the most peace and the most sorrow.  As I sat in the chair holding out my arms for Laynie, I remember the rush of peace that covered me.  My fear was gone, my sorrow was gone, my body had stopped shaking.  Instead the greatest peace filled my body.  As though God was holding his arms around me, His child, as I was holding my child in mine.  As family members came up to the chair to kiss Laynie goodbye I sat there knowing it was all going to be OK.  My Father would carry me through. 

And 5 years later as I sit here, my feet asleep from writing for so long...  I am sad.  I miss Laynie more than ever.  My chest still aches to feel her warm body against me.  But I remember the scars and bruises on her body that she endured in her 9 months of life and I know that she is in a better place.  After her death, God has grown me in ways that I never knew were possible.  I am a stronger believer because of it.  And that is not to say it hasn't been hard.  I can honestly say we are still working on recovering from her death and I don't ever know that we will be the same, nor do I hope that we will.  It has tested our marriage and our faith.  But, through God's love and our relationship with Him we have become closer to each other and to Him because of it.

I don't wish this experience on anyone, but I do pray that you can experience the effects of what an incredible trial like this has on a person.  It was funny, this Sunday our Bible Study group was talking about trials in relation to orphan care and how we are grown by it.  We each endure different trials in our lives.  Ones that are perfectly formed by God to perfect us.  To expose the sin in our lives and to help us grow in His grace and knowledge.  I thank God for Laynie.  For allowing us to love her, to care for her those 9 months, and for giving us the opportunity to show His love to others and what that has done in our lives through Laynie.  May you each find peace like I have in knowing that we are not in control, but that our Father is!