Wesley's Birth Story - Part 3

Click here to read Part 1 and Part 2.

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

Click here to read Part 4 and Part 5.

Wesley's Birth Story - Part 2

Click here to read Part 1.

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.

Click here to read Part 3, Part 4 and Part 5.

Wesley's Birth Story - Part 1

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.

Click here to read Part 2, Part 3, Part 4 and Part 5.

Boy's Best Friend

Today I learned something new about Wesley.  He LOVES dogs!  I had always suspected that he might enjoy having a dog of his own someday, but today I had the joy of watching his complete and utter delight as he played with a friend's dog.

As soon as he saw the dog, Wesley made a beeline for him, waving his arms and smiling. Despite not having other contact with dogs, he knew exactly what to do.  He ran over to him and started petting him.  He touched his face and swatted gently at his nose. (Thankfully my friend's dog is wonderful with kids!)  Soon Wesley was chasing him all around the kitchen, army crawling under the table to join him as they rummaged for left-over snacks, and running in circles around him.

When my friend had her dog sit for a while, Wesley loved going right up to him and standing face to face with him.  Then he would reach out and gently pet him on the nose.  It was the most precious thing.

It looks like this non-dog-loving mommy may be getting a dog sooner than she had hoped!

Impromptu Photo Shoot

Every so often I realize that I haven't taken any pictures of the boys together, and I decide to have an impromptu photo shoot.  Last week we had one of those days.  I know all of you moms out there are laughing, as you know what I am going to say next.  How can it be SO HARD to get just ONE picture with BOTH boys looking at the camera AND smiling?!

There is no way I am sitting here for this!

Check out my new pointing skills!  Why does mom keep looking at me like that?

Maybe if I give her a look while I point that will help. Oh wait, Zach didn't smile anyway!

How about waving at the camera?  Is that better?

I could show you how I can purse my lips.  You love that I'm learning to keep my lips together!  Of course, it would help if Zach wouldn't ruin my pose...

There - that's better!  At least my serious face is the center of attention again.

This is so much fun!  See, I've even got my big brother pointing now!

See mom, you can't complain about this one, can you? At least MY smile is real!

I love that you're so proud of me for sitting still. Can we all take a minute to clap for me?

OK mom, we got a few good ones. Now I'm getting bored and it looks like my brother has forgotten his picture etiquette.  Can we be done here?

The Shiny Red Balloon

When we were looking at putting Zach into preschool, I spent a lot of time talking with the preschool registrar - asking her questions, explaining our family situation, and sharing what we were hoping school would provide for our family.  I never imagined though, that God would use these conversations to make a special place for Wesley in her heart.  When Zach started school, she would often wave me in to her office so that she could ask me how Wesley was doing with his therapies.  She very quickly recognized his affinity for fans and would hurry over to turn on the ceiling fan as soon as he started looking up at it and waving at it - no matter how cold it already was in the room.  Zach's school relocated at the end of February, and when Wesley and I saw her at the new location, the first thing she expressed was how disappointed Wesley must be that there were no ceiling fans at the new school for her to turn on for him.

This week she had four mylar balloons remaining at her desk from the grand opening open house.  On Wednesday, after we dropped Zach off and stopped by to say hi to her, she smiled at Wesley and asked me if he would like a balloon.  My first thought was, what about all these other kids and their parents?  How will they feel about the fact that my kid gets a balloon and none of theirs do?  But I graciously accepted her gift, as I saw the joy that it gave her to give my sweet boy a shiny red balloon of his own.  Sadly, somehow I lost it on the way home.  I have no idea how.  I never saw it float away, but suddenly I noticed that it was no longer in the car.

On Friday morning, I saw that the registrar still had three balloons, and as we stopped by to say hi, she again asked if Wesley would like a balloon.  Feeling bad that I had lost the other one, I said that yes, he would very much enjoy one.  As she cut the string and handed it over to me, Wesley's smile lit up the entire room.  He started laughing as he batted at the balloon over and over again.  Of course, again, as we walked out the school doors, I brushed against the doorway and the balloon broke off of the ribbon and flew away.

When I went to pick up Zach on Friday afternoon, she asked how Wesley had enjoyed his balloon.  As I explained to her my disastrous experience with these balloons, she quickly cut off the last two balloons and gave them to me, saying that she would like for each of my boys to have one.  As I CAREFULLY brought the balloons to the car and then CAREFULLY carried them into the house, I kept thinking in amazement that somehow my little boy came home with all four balloons this week.

I know it's such a small thing, and I'm sure she has no idea how she has blessed me, but to watch a woman dote on my sweet Wesley and love him just for who he is just means the world to me.  To have a woman who hardly knows us faithfully ask questions about how Wesley is doing and genuinely care about his progress has been such an encouragement. Every time I talk with this dear woman, I am reminded of God's love for Wesley and His faithfulness to provide blessing upon blessing for the sweet child that He has created.

I just wish that this dear woman could have been at our house on Friday night to watch Wesley as he played with his balloon.  I tied it to a leg of his little table, and he squealed in delight as he batted at it over and over again.  He ran all around the room shrieking with laughter as he watched it float around, calling him to chase after it and hit it again.  

Then Wesley did the most amazing thing.  He accidentally pulled at the balloon, which released the tie and caused it to rise up to the ceiling.  Instead of screaming until I came to see what was wrong, he ran over to me, stood right in front of me and signed "help", so that I would come and get his balloon for him.

This is the first time he has EVER asked for help without prompting.  The first time he has EVER made a request instead of screaming or throwing himself to the ground.  He was so proud of himself once he realized that when he signed "help", he could tell me to do something and I would do it.  In fact, I am highly suspicious of the activities that ensued.  That balloon floated to the ceiling over and over again the next few minutes, with Wesley watching it float up, looking over at me, smiling, and then running over to me to sign "help".  Of course, I was thrilled to play this game with him, as it re-enforced that he could initiate signs and I would respond to his requests.

Since that night, Wesley has often run up to Daddy or me, signing "help" until we figure out what he wants.  It has been so exciting to see his little mind make this connection, and we are praying that this will be the beginning of a whole new world opening up before our little boy. God is definitely at work in our precious little guy, and it is such a joy to watch his delight as he learns new things.

Thoughtless Words

So often we speak words thoughtlessly without considering how our words might hurt others. In honor of Spread The Word To End The Word Day, let's think before we speak.  Using the word "retard(ed)" is a derogatory way to use someone's disability as an insult, whether we are speaking directly to them or not.

When I hear this word, I hear "That was so Wesley!"  Or, "I can't believe I just did that, I'm such a Wesley!"  Out of respect for my boy, please find another word.

The tongue is a mighty weapon.  According to Proverbs 18:21, "Death and life are in the power of the tongue, and those who love it will eat its fruits."  Today, with God's help, let's choose to give life with our words.