The Virginia Witmers

What's Happening and What We're Learning


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March Update

We had our most recent appointment last Wednesday, March 19.  I’ll start with the positive news.  First, John is growing great and is in the 48th percentile, right where he should be!  He is 4 lbs, 12oz of cuteness (see most recent ultrasound pic below 🙂 ).  Second, our biggest prayer request for this appointment was answered: nothing has changed with his heart or his diagnosis.  His aorta is still looking strong and healthy, which is one thing the doctors keep pointing to as encouraging news.

However, this appointment was very hard for Andrew and me because we learned about some new concerns that we either never heard before or had heard but not processed (the brain can only handle so much information at one time).  Since UVA is a teaching hospital, they have different clinics throughout the week.   We’re grateful for this because we have many sets of eyes looking at our little boy’s heart but different doctors bring with them different communication styles.  For this appointment, we met with a pediatric cardiologist from Richmond.  He was nice but very direct.

He explained how very different John’s heart is.  I won’t go into too much detail but the Double Outlet Right Ventricle (DORV) diagnosis with his HLHS is rare.  I had thought that the two usually go together.  Because he has both major arteries (the aorta and the pulmonary) coming off of the right side of his heart, this causes extra stress on the right ventricle.  Sadly, God did not design this ventricle to do all the hard work.  This means that there is a greater chance of his heart developing a leaky AV valve.  I’m not sure what the long term complications of this would be but the doctor said this is something that will always be a possibility and we’ll have to watch it throughout his life.

Another piece of information we learned is that many CHD (Congenital Heart Defect) babies, and especially single ventricle babies, like John, are at a higher risk for developmental and learning delays.  We met with the head Neonatologist and he said that the benefits of having so many heart surgeries early in a child’s life now outweigh the risks (because they are usually successful) but there are definite risks.  John’s brain may not get the oxygen it needs for a time during surgery and that may have long term effects.  This was very hard for Andrew and me to hear.

We also toured the NICU and the PICU.  As you can imagine, it was very emotional, especially for a tender-hearted, pregnant momma.  We saw many tiny, helpless, sweet babies and machines, wires and monitors.  It was a lot to take in and even more when I consider that our baby will soon be one of them.

One of the doctors we’ve been seeing called me the following day and told me that I only need to come back for one more fetal echo in April but no other appointments since John is growing so well!  He also said they are now going to induce delivery at 7:30pm on Wednesday, April 30.  Hopefully, I will labor overnight and our little boy will be born on May 1.  This is great timing (unless he comes on his own, which is always a possibility) because Andrew will only need to miss one day of class.  Johnny will have his surgery within 3-10 days after birth.

I’m going to start listing specific prayer requests at the end of my posts in case you would like to pray for some our particular concerns.  Hopefully we’ll be able to see how the Lord answers these over time.  Thanks for reading and praying.  We are grateful for you!

Please pray that:

– John’s AV valve would not leak, now in utero, or ever.

– He would not have any significant mental or learning disabilities and if he does, that we’ll be able to help him and get him all the support he needs.

-I would not go into labor before my scheduled induction.  He would be best taken care of if he is born as close to 40 weeks as possible and at UVA where he can be seen immediately by the team who is familiar with his case.

-For patience and flexibility for Katie and Ben.  This is going to be a big change in their little lives.

-For peace, rest, and trust in the Lord’s goodness and sovereignty as we get closer to delivery.

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John Wyatt Witmer

After talking about it for months, we’ve chosen a name for the newest member of our family: John Wyatt Witmer!

We picked John for a number of reasons.  First, it’s a strong name with a nickname that we like.  Second, it means “God is gracious,” which we are experiencing more and more every day.  Third, we are deeply moved by the story of Jesus healing the blind man in John 9.  Our hope and prayer is that the Lord will use even our son’s struggles to show His glory, that the works of God will be displayed in his life.  Wyatt means “little warrior” or “fighter.”

Feel free to start praying for him by name!  Thanks for journeying alongside us and loving our Johnny!


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K and B 2One of my favorite parts of being a mom is watching Katie and Ben interact.  Having two kids only 18 months apart was hard for the first few years but now they are great friends.  They are into the same toys and spend countless hours playing together every day.  As I write this they are up in their room chatting.  They learn a lot from each other. I believe Ben is a more patient and sympathetic little boy because of Katie, and Katie is more fun-loving because of Ben.  I love seeing their friendship grow and pray that it only strengthens over the years.

K and B 1K and B 4  K and B 3


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February Update

After learning our son’s diagnosis, we spent the next few weeks reeling from the news.  There were many up and down moments.  Many tears were shed and many prayers were prayed.  We were, and continue to be, overwhelmed by all the support and love we experienced in the form of emails, offers to help, visits just to pray with us, meals, cards, gifts and gift certificates dropped on our doorstep, prayers, and more. Andrew and I can never fully express our gratitude. This time would be much harder without you all.

February’s visit to UVA was much better than our first trip.  We have some friends from church who had a baby born with a congenital heart defect and they spent some time with us going over questions we should ask the doctors and surgeon.  Because of their guidance and the prayers of many, we felt more prepared as we walked into the hospital; this time we got the chance to ask questions instead of having lots of new information and medical terms being thrown at us.  We had another fetal echocardiogram and thankfully not much had changed with his heart that they could see.  The bad news was that Dr. Schneider did confirm that he will almost certainly need the first surgery, which will occur a few days after he’s born (there was a chance that he might have been able to skip that because his aorta and pulmonary valves seemed to be in perfect balance).  But the good news was that he said the change is actually better for our little guy in the long run.  Dr. Schneider also said our baby has a lot going for him, including his aorta, which continues to look strong and healthy.  He even said that he may be well enough to nurse soon after he’s born, which was exciting for me to hear!

One of the best parts of our visit that day was meeting the pediatric surgeon, Dr. Gangemi.  We were still not totally sure if we were going to stay at UVA or go to a bigger children’s hospital, so we had a lot of questions for the guy who was going to be handling our baby’s heart.  He was great!  Andrew and I were super impressed.  He was confident, knowledgeable and had all the right answers for us.  He said that he also practices in Richmond and performs hundreds of these surgeries every year, including some with the exact specifics of our little guy’s case.  We feel very comfortable with the team at UVA and were so glad to make the decision to stay there for all our care (unless, of course, something changes, in which case we will do what’s needed).

We had another ultrasound to look at everything besides his heart.  He looked great!  He is growing at a perfect rate- in the 49th percentile, which is right where he should be.  We also met with the OB team.  They decided that they will induce me at 39 weeks, April 29, to make sure I am at the hospital when I deliver so he can be seen right away.  Andrew and I left feeling very tired but encouraged.  We stopped at one of my favorite places, Sticks Kebob Shop, for lunch on the way home, which is always a treat.

One of the best parts of all these appointments is the chance to catch a glimpse of our son’s sweet face.  Here’s a profile shot we got at this appointment.  Isn’t he cute?!

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Our Son’s Diagnosis

In August 2013, Andrew and I heard some wonderful news: I was due with our third baby in early May!  After a few months of feeling awful, the morning sickness started to subside and I was back to feeling like myself again.  The midwives noticed that I was measuring a bit big so they ordered an ultrasound to rule out twins (!) in early December.  We took the kids and the ultrasound tech said she saw one healthy baby!  We had her write down the sex of the baby and opened the envelope on Christmas morning.  We all couldn’t wait to meet our little BOY!

Since I had a normal ultrasound just a few weeks prior, I decided to go to my next one at 22 weeks by myself while Andrew was home with the kids.  This is the first ultrasound he ever missed with any of our babies.  On January 2nd, I went in feeling excited to get another peek at our little guy.  The tech talked me through the whole scan…until she started looking at the heart.  Suddenly she got very quiet.  She gently put her hand on my arm and said the thing no expecting mother wants to hear: “Something is wrong with his heart.”

I went numb.  What did she mean?  How was this possible?  We have two perfectly healthy kids and no history of heart problems in either of our families.  Could she be wrong?  I had a quick appointment with my midwife and she told me we needed to go for another ultrasound at the University of Virginia Medical Center within the next week.

One (long, tear-filled, anxiety-filled) week later, Andrew and I headed over to UVA.  We love Charlottesville.  It’s where we met, dated, had our wedding, and spent our first few years of marriage.  For the first time, I was dreading a visit to our sweet city.  Everything moved fast.  After our ultrasound the doctor made a few calls and we were whisked away to have a fetal echocardiogram, where they look only at the heart.  Since UVA is a teaching hospital, we entered a small room with about 8 people, 4 of whom were cardiologists.  It seemed so surreal.  They were throwing around terms that Andrew and I had never heard before but were about to become very familiar with.  We didn’t know what they were saying but it was clear that it was serious.

One of the cardiologists (Dr. Schneider) took us into another room and finally gave us some information in layman’s terms.  He said that our baby has a rare and severe congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).  He also wrote down the words Double Outlet Right Ventricle and Mitral Atresia.  Basically, our son has and will only ever have half a working heart.  The valve that separates the two left valves of the heart (the Mitral Valve) is closed and so blood can’t flow to that chamber.  Since it never has the opportunity to pump, it is severely underdeveloped (hypoplastic).  Therefore, the right side has to do the work for both sides.  This causes all kinds of complications because all chambers of the heart have specific jobs and one isn’t meant to do all the work.  You can read more about the details here: http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html

Dr. Schneider gave us some good news, which is that our son’s aorta (which is usually affected in babies with this condition) looked very strong.  He said the baby is perfectly safe in utero and I could anticipate a normal delivery.  He talked about the steps we need to take after our son’s birth.  Babies with this heart defect usually have 3 staged surgeries — the first a few days or weeks after birth, the next around 4-6 months, and the last around 3 years.  He will never be cured but this is their current recommended treatment (before the 1980’s babies with this condition died).  Since these surgeries are relatively new, there aren’t a lot of stories of adults living with this condition.  The doctor did mention that our son may need a heart transplant when he’s around 20 or 30.  His heart will never allow him to be as active as a person in full health.

We are grateful that the Lord gave us many little blessings that day (which I’ll write about in a later post), including presence of mind to focus and ask good questions.  But when we left we were physically and emotionally exhausted.  This was not the news we were hoping for.  We came home, thanked our sweet friend for taking good care of Katie and Ben, made some emotional phone calls, ate a delicious dinner dropped off by a dear family from church, and were all asleep by 7:30 pm.  It was one of the hardest days of our lives but even in the midst of great sadness, surprise, and fear, we saw, and continue to see, glimpses of the Lord’s provision for our family.  We are trying to focus on that as we move forward in light of this hard news.