Wesley's Birth Story

The story of Wesley's birth and subsequent diagnosis is a story I have been trying to recall for almost two years now, but the details are so blurred that I may never remember what is fact and what is fictitious embellishment I have created in my head.  Despite this, I will attempt to document the details since with time the facts will only grow more blurry until they are eventually forgotten.

After Zach was born, we had difficulty conceiving again, had another miscarriage, and then I was diagnosed with secondary infertility due to anovulation.  Those were some hard months, and many tears were shed as I feared we might never have any more children. After consultations with several doctors and much prayer, Mike and I decided to follow our doctor's recommendation and use Clomid, a fertility drug, to induce ovulation.  Much to our surprise, the Clomid was successful and I got pregnant that first month.

The first trimester of my pregnancy with Wesley was scary.  I spotted multiple times, so we went in often for ultrasounds and heartbeat checks.  We were always prepared to hear that our baby's heart was no longer beating, but God had a different plan for Wesley's life.  For that, we are filled with gratitude to the Lord, who has upheld Wesley's life from the very beginning.

Because of family history, we had a level 2 ultrasound at twenty weeks.  It was at this appointment that we received our first indication that something might not be right.  As the doctor measured Wesley's face, we noticed that she kept measuring his nasal bone over and over again.  At this point I became concerned and asked her what she was looking for.  She nonchalantly explained that she was re-measuring Wesley's nasal bone because at first it had measured small.  But when she re-measured it, it was at the low end of normal.  She then said that a missing nasal bone or short nasal bone was a soft marker for Down syndrome, but that since Wesley's bone had re-measured as normal there was no reason for concern.  While she seemed reassured by her final measurement, I walked away from that appointment with growing concerns and questions in my mind.  I can see now that this was God's way of beginning to prepare Mike and I for the news we would soon be receiving.

On April 6th, the day after Wesley's due date, I went in for my regularly scheduled appointment and sat down for my stress test.  I remember the nurse coming in to check on the stress test several times with a concerned look in her eye.  Once I had documented the required number of movements, she took the test and went to talk to my doctor.  When he came in, he informed me that he wanted to do an ultrasound to make sure that I had enough amniotic fluid.  He was concerned because while Wesley was moving enough, and his heart rate was going up with his movements, his resting heart rate was too low.  They wanted to see resting heart rates no lower than 120, and his was at 110.  The ultrasound showed that my amniotic fluid was fine, but my doctor was still concerned about Wesley's heart rate.  He decided we needed to induce labor that day.

So I called Mike, called our babysitters, and went to get everything packed for the big trip to the hospital.  I reviewed the verse I had picked out to meditate on during labor and delivery: "Fear not, for I am with you. I will strengthen you; I will help you; I will uphold you with my righteous right hand." Isaiah 41:10.  Little did I know how desperately I would cling to that verse in the hours ahead and then in the months and years to come.

Upon arriving at the hospital, IVs were placed, and the Pitocin drip was started.  Within half an hour, Wesley's heart rate plummeted.  Nurses and doctors were everywhere and I was given a shot of something which brought his heart rate back up.  In the midst of all the chaos, the anesthesiologist came in and explained to me that at any moment they might need to rush me in for an emergency c-section.  I will never forget the overwhelming fear that gripped me.  I might lose my baby.  What if Wesley didn't make it through the delivery?  Through all those fears, I heard God's still small voice whispering to my heart, "Fear not, Elisabeth.  I am with you even now.  I will give you the strength to walk down the path I have ordained for you.  I will help you through this.  I am upholding and will continue to uphold you with my righteous right hand.  I will never let you go."

After the big scare, the Pitocin drip was stopped for an hour as we all watched and waited to see how Wesley would respond.  Once he had stabilized, the Pitocin drip was started again, but this time at the lowest dose possible.  My contractions were ten minutes apart, not very painful, and progression was occurring at an alarmingly slow rate.  To no avail, my doctor attempted to break my water in order to jump start labor.  Amazingly, though, my water broke on its own several hours later.  At this point, the nurses noticed meconium and called in a Neonatalogist to be in the room at Wesley's birth in case of aspiration.

Pitocin was still necessary to the very end, but after that things started moving at a more rapid pace, the contractions increased in strength, and I decided to get an epidural (both for pain and also in preparation for the possible c-section).  A little while later, Wesley's heart rate dropped again, the nurses and doctors rushed in again, and this time I don't remember what happened.  All I know is that his heart rate came back up again and the decision was made to wait on the c-section.

While other things are blurry, I will never forget Wesley's delivery.  Wesley came out, and he wasn't crying.  He was rushed over to the Neonatalogist who began working on him at once. Unlike with Zach, Mike was not permitted to take pictures as the doctor and nurses surrounded him, suctioning out his mouth and nose and giving him oxygen.  I remember trying to see him from across the room, seeing the fear in Mike's eyes, and wondering why he wasn't crying.  As fear again filled my heart, God again whispered to me, "Fear not, Elisabeth.  I am still with you.  I will uphold you.  I will never leave you or forsake you."

It was then that we saw another instance of the amazing grace of God.  We found out that I had the beginnings of a placenta abruption that had gone unnoticed until delivery.  So, it was vital that a neonatalogist be there to care for Wesley, but he never would have been there if not for the meconium (which Wesley never aspirated).  When I think back to this, I am amazed at how God orchestrated every detail of Wesley's birth and provided for his every need even before we knew he needed it.

I remember holding Wesley after he was finally handed to me and thinking that he was perfect.  After all the difficulty Zach had learning to nurse, I was amazed when Wesley latched on right away and had what I thought at the time was a perfect nursing session.  I will always treasure those moments of looking down at Wesley's adorable face, admiring his every feature, and enjoying the bond a mother has with her nursing child.  The Lord in His kindness saw fit to bless me with this experience, and I am thankful I didn't know at the time that this would be his one and only time to nurse successfully. Those first minutes with Wesley were glorious.  Mike and I rejoiced that God had answered our prayers and that nursing seemed to come naturally to Wesley.  We thanked God for giving us a healthy baby and for protecting Wesley through the labor and delivery. He was so fair and chubby - the differences between him and Zach were night and day - and we joked that he would be our big, strong, tough boy who would learn to stand up to his big brother.

I am grateful that the Lord gave us such a sweet time with Wesley when he was first born, because the next few days in the hospital were very stressful.  After nursing somewhat successfully right after his birth, Wesley then became uninterested in nursing or taking a bottle, and his jaundice kept increasing.  I worked to no avail with him every few hours, trying to get him to nurse.  Then I would pump and we would attempt to give him a bottle.  We had one wonderful nurse who was able to get him to take a bit of milk from one of the many bottles that we tried, but the rest of us failed miserably.  To add to this, he kept choking, gagging, and spitting up mucous, and his chest and neck retracted with every breath he took.

After we brought him home, his feeding and his breathing seemed to grow more difficult.  I remember the process that we repeated every three hours - attempt unsuccessfully to nurse for 30 minutes, pump, give bottle to Wesley.  We should have realized right away that Wesley would never nurse, given that it took him 30 minutes to choke his way through two ounces from a bottle.  But how were we supposed to know?  Doesn't every child figure these things out?

Then the doctor's appointments began.  Because of his jaundice, I was bringing Wesley in to the hospital every other day for blood work.  Family history dictated that we take him to a cardiologist to rule out any heart defects.  We also had many trips to specialists trying to identify why he was struggling so much to breathe.  Finally a pulmonologist identified that it was related to his larynx collapsing over his airway and sent us to a second otolaryngologist to look into the issue further.  All of these appointments were in between frequent trips to the hospital to meet with the lactation consultants there.

During these weeks, I remember looking at Wesley and noticing little things about him that reminded me of my sister (who has the same diagnosis).  None of them were particularly concerning or unusual.  It just seemed more than coincidental that he would have such random similarities with her.  For example, both of them tended to overlap their second toes over their big toes when they were babies.  As well, both of them had short necks with lots of rolls of skin.  This was particularly noticeable because both of them spit up everywhere and it was difficult to clean their necks thoroughly.  Truthfully, none of these things were unusually abnormal, and they were so small that no one else would have noticed.  But there is just something about a mother's intuition.  As I began to notice these things, I KNEW.

At the time I was not aware of exactly what Wesley's diagnosis might be, so I Googled "Trisomy 4p" to see what the symptoms are.  My eyes filled with tears as I read that commonly, "affected infants may have feeding and breathing difficulties".  It was as if this was the confirmation that the similarities I was seeing between Wesley and my sister were not just coincidental.

I will never forget the first time I verbalized my concerns to one of my friends.  She had come over to pick something up, and as I shared my concerns about Wesley's health with her, she looked into my eyes with such love and care as she asked me if I was worried about the similarities I was seeing. After pouring out my heart to her, she gently reminded me of God's love for Wesley and His faithfulness to our family.

But this I call to mind, and therefore I have hope:  The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him."  Lamentations 3:21-24

When Wesley was one month old, we brought him in to our pediatrician's office to get his blood drawn for a chromosomal karyotype.  We were told that the results would be in within a week.  My doctor told me that he had no reason to suspect anything was wrong, but that he was happy to run the tests to allay my fears.  When I had not received the results a week later, I called the office only to be told that the lab had contacted the doctor's office to ask specifically what they were supposed to be looking for.  As I look back, I can see how God used this phone call to again prepare our hearts for the news we would soon be receiving. For why would a lab have additional questions on normal looking chromosomes?

A week later, I called again for the results and was told that they were in but that my doctor had not yet seen them.  As soon as he saw them, they would give me a call with the results.  A few hours later, after the doctor's office had closed, the phone rang and I saw my doctor's name on the caller ID - not the doctor's office, but my doctor's personal phone.

When I answered that phone call, the world as I knew it was shattered. My doctor gently told me that he had the results from Wesley's chromosomal karyotype, and that Wesley had 47 chromosomes.  My mind scrambled, as in that moment I could not for the life of me remember how many chromosomes most people have.  I did my best to listen to him, but instead of hearing his words, all I felt was my world caving in and the rivers of sorrow swirling around me as if to drown me.  I wrote down the name of the geneticist he wanted me to see, thanked him for calling me, and hung up.  I felt numb and in shock.  After calling Mike, telling him the news, and asking him to leave work early and come home, I called a dear friend.  I remember sobbing uncontrollably on the phone to her and saying over and over, "Why?  Why did God do this?  This can't be happening.  This can't be true!"  I will never forget her tears of compassion and love as she cried with me.  That night she and her husband came over and just sat with Mike and I as we cried and struggled through our feelings and how they lined up with what what we knew to be true about God in our heads.

Another friend of mine also called that evening, and to this day I regularly pray that the words she spoke to me will one day come true.  I remember her saying that her prayer was that Wesley would be filled with the Holy Spirit from a young age and that his life would point many to the Lord and bring much glory to God.

The day I received the news of Wesley's diagnosis was the day that Isaiah 41:10 truly became real to me.  Now that my fear was an all-encompassing fear for the future of my child for the rest of his life, God's promise that He was with me became so much greater to me.  For the rest of my life as I cared for my precious Wesley, no matter what happened, God would be with me.  He would never leave my side! Oh what a wonderful promise!  As the rivers of sorrow crashed over me, God's promise that He would strengthen me for the road ahead and that He would help me as I walked each day along the road that He had ordained for me gave me the hope that I needed to put one foot in front of the other and keep going.  Oh, and the promise that He would uphold me. How I clung to that!  In my mind I pictured the rivers of sorrow threatening to sweep me away, but the Lord reaching down and lifting me up and upholding me with His strong, righteous, right hand.  God was promising to never let me go. No matter what the future held, I could know for certain that God, because of His abundant and merciful grace, would hold me up and never let go of me.

Soon after receiving Wesley's diagnosis, I began meditating on Romans chapter 8 each day for several months.  God brought much comfort to my soul through Romans 8:28-29, 32, which says:
And we know that for those who love God all things work together for good, for those who are called according to his purpose.  For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.... He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? ... For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.
I clung to the promise that God would work Wesley's diagnosis and subsequent struggles in life for good in my life, in Mike's life, in our marriage, in our family, and in Wesley's life too if he trusted in Jesus as his Savior.  Through these verses, along with others, God opened my eyes to an eternal perspective as I saw that God was using the trials I was walking through and would continue to walk through to conform me to the image of Jesus.  While I selfishly wished for life to be easy on this earth, I began to see that God was using these circumstances for my eternal good, which was far greater than any momentary affliction.

As I looked at the possible pain and struggles in our future, God graciously drew my heart to Him, reminding me that I could trust Him and trust that He was working all things for my good because of the gospel.  Since God had already provided for my greatest need by sending His Son to die on a cross and pay the price for my sins, how could I not trust Him to graciously give me everything that I needed to raise Wesley and care for him?  How could I not trust Him to graciously give Wesley everything that he needed in this life?  Then God confronted my fears by reminding me that nothing - nothing present and nothing in the future - would ever be able to separate me from the love of God in Jesus Christ my Lord.  If this promise was true, then I truly had nothing to fear!

Two years later, I still fear the future sometimes, and I still mourn the life that Wesley will never live here on this earth.  Some of my fears have come true.  Therapy is hard work.  Wesley is falling farther and farther behind his peers.  Zach has had a difficult time adjusting.  Mike and I have had to work extra hard to build our marriage as we walk through this together.  Life is hard. But there are so many joys too!  While Wesley's diagnosis is a trial, Wesley's life is a complete delight and joy.  There is more laughter in our home now than there ever was before Wesley was born.  We have the opportunity to look at life through the eyes of a little boy who is radiant.  Every moment of every day is exciting for him as he discovers new things and enjoys life to the fullest. And oh how we love him!  I can't imagine what my life would be like without my sweet Wesley.

God has blessed us abundantly in giving Wesley to us as a precious gift. While the rest of the world might not think so, we have come to see that God made no mistakes when He created our sweet Wesley.  Wesley is not living out God's second best plan for his life.  God created him perfectly according to His perfect plan for Wesley's life and for ours.  The lines truly have fallen for us in pleasant places.
The Lord is my chosen portion and my cup; you hold my lot.  The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.... I have set the Lord always before me; because he is at my right hand, I shall not be shaken. Therefore my heart is glad, and my whole being rejoices; my flesh also dwells secure.  For you will not abandon my soul to Sheol, or let your holy one see corruption.  You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.  Psalm 16:5-6, 8-11

1 comment:

My Plate Is Full said...

Oh my goodness your boys are too cute!!! I came across your blog because as a mother of a child with physical and learning disabilities… I am always interested in hearing the stories of others and how they have coped with raising a ‘special’ child. I could so relate to your story when you first learned of your son's diagnosis. When I found out that my fourth child has the same disease as my 3rd I just couldn't understand how God allowed it to happen AGAIN! I just felt so let down! I now know that GOD has a plan. I recently saw a film called ‘Dakota’s Pride’ which showed the MANY wonderful blessings children with Down syndrome bring to this world. I can’t even express to you how moved I was by this film! I was amazed by all of their accomplishments… one young man with Down syndrome even graduated from college, drives his own car and is an advocate for other adults with Down syndrome! I know you get to experience these many wonders on a daily basis, but I thought I would share the following link for the video. http://www.dakotaspride.com/
I hope to get my blog and website up and running soon!