Sunday, July 17, 2011

The Good Shepherd

The LORD is my shepherd; there is nothing I lack.

The night before I had my hospital visit, a friend posted this psalm on facebook.  I was up all night throwing up.  I was more nervous than I have been even in recent memory.  During the day before, small things were setting me off.  My Aunt called, because she had found an OB who would take me even this late, and who was excellent.  Unfortunately, the doctor is about an hour's drive away from me.  My father wanted me to alert the fire and rescue squad of our situation.  If you call an ambulance they will not take you to the hospital of your choice, they will take you to the closest hospital.  There is a good chance that if Sarah is born at the local hospital, we will be almost immediately separated.  She is likely to need higher level care than they can offer.  So she'd be moved and I would stay put for the duration of my recovery.  I was on the verge of tears right at the dinner table at the thought of calling the rescue squad.  It was just more than I could think about at the moment.  I read the familiar psalm, but I could not help thinking, this is not the scripture for me tonight.  I just laid in bed, feeling scared and trying to get past my fears on my own.  I recited some familiar prayers, but I was not really praying- just reciting.  I have known for months now about the various potential health problems my daughter is facing.  I expected that the next day those potentials would stop being potential.  

In green pastures you let me graze; to safe waters you lead me; you restore my strength. You guide me along the right path for the sake of your name.

I woke the next morning before my alarm.  It was one of those mornings where I was not sure whether or not I had slept.  At 4:30 a.m. I checked my clock to make sure I had not slept through my 4:45 a.m. alarm.  I waited, wide eyed, until 4:45 before getting up and taking my shower.  We were out the door at 5:15, as we had planned.  We left Lily behind.  We had slept at my parents' house so that we could leave Lily behind.  She was asleep when we left.  I was fighting strange tears again.  This time, they were for Lily.  How could we just leave her behind.  I was completely focused on Lily most of the way to the hospital.  As soon I as was sure that my parents were awake, I checked on her.  She was still sleeping, of course.  Fear is irrational, and apparently it will cling to anything.  I was going through the motions of the intimidating day- but the fears would not leave.  They clung tight to anything except the realities of their invention.  

 Even when I walk through a dark valley, I fear no harm for you are at my side; your rod and staff give me courage.

My first appointment was with the MRI.  I was actually excited about it.  I had fallen asleep during my last MRI and, as you can imagine I desperately wanted to sleep.  Nausea ruins everything.  I did not get to enjoy my MRI nap, because as soon as I lay down, nausea hit.  They did the MRI with me lying on my side, which helps a bit.  (I should note, the technologist who did the MRI, was the same guy who had done my earlier one.  He remembered us.  It is that kind of place.  They guy who takes care of hundreds of patients, remembered us from our test two months ago.)  After the MRI, he took us to get the ultrasound.

After the ultrasound, we had a bit of downtime.  We had just over an hour before our next appointment.  It was early for lunch, but we had skipped breakfast.  So we went to the cafeteria.  At this point, we had not met with any of the doctors yet.  So, we did not have any new information yet.  Our discussions were limited to how much we liked the MRI technologist, how much we missed Lily, and how much I wanted a cup of coffee.  We ate.  We called Lily.  (She was having a fantastic day!)  We found coffee.  Eventually we made our way to our next appointment.

Our genetic counselor had once again thought about how to make our lives easier, and how to make the diagnosis make more sense.  She had tried to collect all the doctors together for a meeting with us.  That way, we would get out earlier, and also we could have a whole picture rather than a piecemeal account collected from all over the hospital.  We did not get all the doctors together, but we did get the neurosurgeon and the radiologist, as well as the genetic counselor, in the room together.  It was pretty exciting to hear them talking as a team.  The neurosurgeon will make sure that Sarah's brain has room to grow.  Since the skull is fusing, this is a serious issue.  The good news is, her brain is not pinched or cramped now.  It has room to grow for a little while.  He also made it very clear that this is a serious surgery.  Although that is not surprising, it needed to be said.  He had been speaking with such confidence about what he was going to do, and how the plastic surgeon would put things back together, it was easy to forget what we were talking about.  It is a complicated surgery with a lot of blood loss and a lot of risk.

Then we met with the plastic surgeon.  We really like him.  We arrived for the appointment early and we left late.  I know he is enormously busy.  I know how valuable his time is.  He made us feel like he had all the time in the world to answer any questions we had.  He has experience with Apert's children.  He has done the surgeries that Sarah needs before.  He had the confident competence you expect from a surgeon, but also the warmth you would expect from a pediatrician.  He will work with the neurosurgeon on any surgeries done on her skull.  He will also take care of her hands.  Her fingers are fused together.

Then we went to get an echo.  The cardiologist said that everything looks the same, which is what we had hoped.  The vessel carrying blood from the umbilical cord to her heart does not take the normal route, through the liver.  It does not have anything to slow the blood flow.  If at birth it has not caused any damage, it should not be an issue.  However, this anomaly could strain the heart.  In this case, no news was good news.  He wants one more echo before she is born.

Finally, we met with the radiologist and the genetic counselor.  We were meeting with them again because they both wanted to make sure that we had a whole picture.  Radiologist gave us all copies of her report, and she put up the MRI images on a screen for us to look at together.  She compared this MRI with the last.  She does have some concerns that she would like addressed at birth.  Little Sarah will have an abdominal ultrasound in the hours after birth.  Although there is no evidence of CHAOS anymore, she wants to keep an eye on the lungs and respiratory system.

The bottom line from our perspective, although we do not expect to need surgery in the first hours, or possibly even the first few weeks, after birth, Sarah should be born in a hospital where any of these issues can be addressed promptly.  We decided that we wanted the Children's hospital team, as it is now apparent that they are a team, close by.  We have chosen an OB in DC, and made contact.  He has worked with these doctors that we have come to trust.  He was recommended by our genetic counselor, and she called him.  He called me back and if all goes well, my first appointment with him will be this week.

 You set a table before me as my enemies watch; You anoint my head with oil; my cup overflows. Only goodness and love will pursue me all the days of my life; I will dwell in the house of the LORD for years to come.

I had so much anxiety leading up to that hospital visit; more than I had yet experienced.  Keep your head up, and keep moving.  That was what I told myself.

This morning, our pastor preached about the parable of the mustard seed.  We did not get the usual sermon about how God can do great things with tiny things.  His spin was slightly different, and exactly what I needed to hear.  He reminded us that faith is a gift from God.  We can grow in faith, as we grow in our relationship with God, of course.  We should not say that we do not have enough faith.  We should not say it because we have no sense of what God can do with our mustard seed.  But also because we know that God gives us everything we need and always enough.

God gave me faith.  It did not feel like enough.  I stumbled badly through that long day.  I leaned hard on my husband.  I asked others to pray for me.  (Yes, me!  I felt very selfish asking for prayers for myself, not for my daughter.)  I tried to listen when I knew God was speaking to me.  I tried to pray, when my fears kept me awake and made me sick.  At the end of the day, I knew God had carried me.

Even when I walk through a dark valley, I fear no harm for you are at my side; your rod and staff give me courage.

So, I did fear.  I will probably continue to have fear.  Some days are harder, and that was one of the hardest. I know that at the end of the day, God is in charge.  He will equip me to handle what comes in the way.  He loves my little girl, and He loves me.  Maybe this is what it takes to grow a mustard seed.

"I am the good shepherd. A good shepherd lays down his life for the sheep." John 10:11

Wednesday, July 13, 2011


Tomorrow, I will get up roughly four hours before I usually get up.  (That is 4 instead of 8.)   That way I can be on time for my various appointments at Children's hospital.  I have another full day of appointments at Children's.  I am nervous.  I am meeting with the various surgery teams who are likely to participate in the care of my daughter.  I am also getting another ultrasound, another MRI and another fetal echo cardiogram.  The tests will show more clearly what is wrong than they did last time, because Sarah is older.  The abstract issues we have been facing will be discussed in practical terms tomorrow.  Please, say a prayer.  Maybe prayer and exhaustion can keep my nerves at bay.

Saturday, July 9, 2011

back from vacation

Thank you.  I have gotten so much encouragement and prayer support, some from people who have never met me, from readers here.  I am sorry I have not posted in such a long time.

I just got back from our week-long vacation.  We decided we needed a real vacation, so we left our computers at home.  We brought our phones, but they are not smart phones, so no internet, and we did not carry them with us everywhere.  Cell phones can be great; you are never alone when you have a cell phone.  Miss Manners recently wrote an article that referred to them as leashes, and that is how I often think of them.  Since everyone has instant access to everyone all the time, some feel that they are entitled to immediate response from anyone.  We were comfortably disconnected.

Now returning home we are re-immersed into our busy, ever-connected life.

I spent my morning on the phone with various scheduling departments and doctor's offices.  Children's hospital made that particular chore easier.  We have to get another MRI, another Ultrasound, and another echo.  We also have to meet with the neurosurgury team and the auto-laryngology team and, of course, the genetic counselor.  I only had to talk to one person to set up all those appointments.  Our genetic counselor, ever making my life simpler, gave me a direct line to someone who could coordinate all the appointments with all the different doctors and departments.  That is no simple chore, and we are very grateful.  I am grateful that I did not have to talk to six different people to make my six different appointments.  I am grateful that I only have to go all the way to the hospital once, since she made the appointments for the same day.

Then I began the more difficult chore of finding a new OB.  I know, it is getting late.  It is getting more and more urgent that I find someone.  It is hard!

My pregnancy is getting harder too.

Little Sarah seems to think that she can get out only she can find the right place and push hard enough.  I have been trying to explain that no matter how hard she pushes her head into my rib cage, she will not get out that way.  Anyone who has ever raised a child can tell you though, children do not always listen.

I look and feel as though I am further along than I am.  Everyone who asks is surprised to find that I am not due until September.  They try to hide their surprise, presumably thinking I will be offended that they have noticed my size.  I can assure you, wearing these proportions, I am more aware than you of my size.  I am not offended in the least if you should happen to notice that, for instance, you may not have arms long enough to give me a hug.  I am, however, slightly amused when you try to hide your awareness.

I am tired.  Really, really tired.  I do not remember being this tired when I carried Lily.  Maybe my memory is colored by the joy if meeting her.  Maybe it was easier.  I know I was smaller.  (About half my maternity clothes don't fit!)  Pregnancies are unique, and this one makes me tired.

We spent half of our vacation in a family house, halfway up a mountain in New Hampshire.  I had hoped that I could climb a bit.  Not serious climbing, mind you.  I had no intention of doing any rocks or cliffs.  I had no intention of making it to the top of anything.  But some easy mountain hiking sounded wonderful.  The house has a meadow cleared in the back, so that we can enjoy a spectacular view of another mountain.  On the first day I was there, I walked, slowly, with my daughter stopping to pick wildflowers and wild strawberries about every three steps, to the end of the meadow and back to the house.  I barely made it.

It is not that I was tired, though I was.  What mother is not used to continuing to plod ahead, though she is tired?  I was in pain.  My abdominal muscles hurt.  All of them.  All around my round belly, I was in pain.  I began to wonder if I should call for help.  I would have, if I had to go much further.  I did not know whether this was my muscles protesting against carrying my ever-growing belly, or whether it was contractions.  I made it to the house and I laid down for the rest of the day.  The pain went away and did not return.  I spent most of the rest of my vacation smiling at the same view from the adirondack chairs just outside the house.

So now, home again, I am disinclined to do much walking. I understand that someone makes garments that support pregnant bellies?  I am not sure how such a thing would work, but I am going to look into it.  It would be nice to take some of the weight off my abdominal muscles.

The best part of our vacation was the company.  We spent time with family.  We spent days with cousins I have not seen in years, along with their spouses and children that I had not met.  We spent days with my parents and siblings.  We spent days with my Godmother, and her family.  It was just wonderful.  I have been blessed with an amazing family.  Seeing so many people from both sides of my family in such a relatively short time was an eye-opening delight.  What a joy to have such different people, supportive in different ways, surrounding me and my little family!  What a pleasure to glean wisdom, amusement, and advice from such varying sources!