Tuesday, September 21, 2010

Our Journey Thus Far

Our Journey Thus Far

I’ve been wanting to write this for awhile – and I apologize in advance for how long I anticipate it being but there’s a lot I want to say about the journey we’ve been on to bring our precious baby boy home healthy.

First things first – how it all started:

One of the biggest lessons I’ve learned in the past couple of months is that God is always right on time.  Now, like a lot of lessons we learn in life it has practically had to be beaten over my head but I’m learning now that even when I think things should go differently, God has a reason and his timing is perfect.  Exhibit 1.  I had a very good pregnancy, granted I had morning sickness from about 4 weeks until the day I had Owen, but all in all everything was great, until 31 weeks, then our world was turned upside down.  But hold that thought.  I worked all summer, starting the first day we were out of school at Golson, through August 4th.  I taught the summer VPK program which was a 300 hour program.  I knew that a mid-morning appointment in Dothan would cause me to miss about half a day of work and I didn’t want to miss that much work so I rescheduled my appointment pushing it back one week.  That way I could work through my lunch break and only end up taking 30 minutes to an hour off to make it to my appointment.  Well imagine my frustration when they told me that day since I was leaving early I should go ahead and take my lunch and just take the rest of the day off.  The whole reason I changed my appointment was so that I would not miss too much work.  Little did I know God had another plan – he was in charge – he was at work in our lives.  We had a wonderful OB in Dothan, we were using Allison Marker (LOVE HER) at Cleveland and Gilchrist.  We were at a point in the pregnancy where we meet all the doctors and we were meeting the third and final doctor this appointment.  Well, I believe it was a combination of having a different doctor measure me, waiting an extra week, and just good thorough doctoring, and God’s guidance that led the doctor to order an unscheduled ultrasound for me that day.  April the technician found a spot and the next thing I know we have an appointment in Pensacola two days later “just in case.”  We went to Pensacola and it took 3 different technicians 4 or 5 tries to find what they were looking for because of the way Owen was positioned, but at last they found it and explained to us that they believed Owen had the Vein of Galen brain aneurysm – it was the first time we heard those words in relation to our child “brain aneurysm” wow, it’s not what you expect at all.  Even in the midst of that storm, all I could think was praise God they found it.  We would later confirm their initial diagnosis through a fetal MRI and we would learn that less than 1% of cases of Vein of Galen are diagnosed in-utero, yes praise God they found this.  And in those rare cases they are almost always found because the baby is already in heart failure or has some sort of deformity.  Our baby’s heart was perfect, as we would be on heart monitors weekly until he was born with no deformities.

We met with neurosurgeons before he was born and as he was showing NO symptoms of the aneurysm we believed that he would likely be fine until he was about 2 years old and then we would treat the aneurysm, we were warned that many newborns with this diagnosis do experience heart failure but the doctors really felt that he would be among the group of children who go undiagnosed until they are about 2 years old and begin to develop hydrocephalus (water on the brain).

The plan was for us to induce labor at 37 weeks and have him in Pensacola.  At 36 weeks they did an amnio to determine if his lungs were developed enough to induce at 37 weeks, they weren’t.  Initially I was devastated, I was so ready, we had been counting down the days for weeks, and now we were being told possibly two more weeks.  Looking back it was somewhat selfish and although I was upset it was brief, maybe half an hour then I realized there was a reason for this and I could handle another week or two, besides God was at work.  The next week our doctor called and told us he would induce me on September 5th hoping for delivery on the 6th.  And that’s what happened.  Owen was born on Labor Day after 20 hours of labor I had to have a C-Section, I listened and waited for him to cry but he never did, I was really scared, but he was healthy, they had intebated him immediately so he couldn’t cry.  I heard the nurse say he had one eye open then they wheeled him over to me where he opened both eyes for about 20 seconds he stared at me before he was wheeled away.  It would be hours before I would see him again.  Late that night we convinced the NICU at Sacred Heart to break the rules and allow me to come down (in my bed) to see him during non-visiting hours.  Initially, he was doing great.  His heart looked good, he was 7 lbs 15 ozs, a giant in the NICU where the average baby weighs 2 lbs. Thank God they made me wait another week to ensure he was a big baby – that would be so important when he faced his first operation.

So What Exactly Is the Vein of Galen Aneurysm? And what does it do?

Basically, the VOG is a malformation of vessels in the brain.  But the biggest problem with the VOG in newborns is that it causes heart failure – and it did in Owen at 2 days old.  The heart works so hard to pump blood to the body but since the brain is in distress all of the blood goes to the brain first and in the VOG the blood doesn’t travel from the vessel into smaller veins, then into capillaries like it should it just goes straight through the vessel and back to the heart meaning it leaves the heart and returns to the heart at the same speed and pressure.  The heart isn’t made to handle the blood returning at that speed and pressure so the right side of Owen’s heart started to swell pushing his lungs out of the way and causing major distress to his heart and lungs.  Before he was born it was decided that Owen would have an MRI around Day 4 (doctors plan) but Gods plan bumped that up to day 2.  By Day 3 Owen was on a jet to Shand’s so that the neurosurgeons who developed the treatment for VOG could begin treating him by Day 4 he was undergoing his first brain surgery.  I remember many people asking why they were waiting to operate, why wouldn’t they operate immediately, and I couldn’t answer that question but now I know that they needed to make sure he was stable and he’d had a big day, being moved from Pensacola to Gainesville.  I made them discharge me a day early from Sacred Heart and we left the hospital when he did.  I was pretty okay until I was being wheeled out of the hospital without my baby – I broke down and cried to my mom that I should have a baby in my arms but I knew my baby was in God’s arms and I got to him as soon as I could.

The treatment that they’ve been able to do on Owen entails going in through the groin to access the brain.  They place coils (or glue) in the vessel which routes the blood the way they want it to go.  Before his first surgery, the neurosurgeon told us that they expected to help a little then come back 3 days later and do it again and this would repeat until he was better likely for weeks.  After the first surgery they were very optimistic and told us that we could wait a month before they had to go back in that way Owen’s vessels could get bigger before the next procedure.  We were so excited and felt really good about the prognosis.  That was on a Friday.  Saturday and Sunday were good.  Monday was not.

The Worst Day

Monday, our baby was a week old, and when we got to him that morning he was grey, his organs were not profusing – meaning that blood wasn’t getting to them and they weren’t functioning properly.  The doctors told us that the brain was demanding all the blood so his stomach and extremities weren’t getting the blood they needed.  I didn’t want to leave his side, I was afraid he wouldn’t be there when I came back if I left him.  His lactid acids were an 8 (they want them under 1 – 8 is very bad).  The doctor actually told us that he wasn’t giving up on him but there wasn’t much left they could do.  It was the hardest day.  I had been so strong for weeks but that day I wasn’t so strong.  Luckily, Ed was and he kept it together for me, everytime I began to have doubts he woud remind me that God was going to take care of Owen and that he was going to be fine.  We prayed over Owen so many times just as we’d been doing.  We were told that morning that they were going to go ahead and do a second procedure – again, I wanted them to do it right away, I didn’t understand why they weren’t wheeling him into the OR, he was at death’s doorstep.  But God was right on time again.  We left Owen around 2:00 that Monday and I took a nap upstairs at the hospital.  When we returned he was a different child, his color was back, he was doing better, becoming more stable, prayers were being lifted and answered.  I remembered something his Godmother would do when she was having a really hard time - she would pray and then sleep with her bible under her pillow.  So we went and bought Owen his "first bible" and we placed it under his incubator and prayed with him again. We also put our bible under our pillows and they've stayed there.  The next morning when he went into surgery his lactid acids were down to a 2 and he was very stable – he was in a much better place to go into the surgery than he would have been the day before, again God showed me he’s right on time and now I try to remember when I’m not sure why things aren’t happening when I think they should that God has a plan and he’s right on time.

God is still in the business of answering prayers

The first surgery they placed 17 coils in his brain, the second procedure they placed 2 but they got the flow in his brain down from 46% to 16% they wanted to get it under 20% so they felt they were very successful.  It’s been 6 days now and they’ve all been really good days.  His lactid acids have gotten better and better, his organs are profusing, his heart looks smaller on the x-ray, his heart functions have improved, he’s almost breathing on his own, and he’s digesting food.  They have taken him off of most of his heart medicines and are weaning him off the last one now.  Today he was taken off of his ventilator and we were really excited - but his lungs weren't strong enough just yet so they had to put him on a C-Pap which allows him to breath on his own but still gives him just a little support.  He’s doing great, yet we know how fast things can change so we still pray.  He had an MRI Sunday and today the neurosurgeons told us that they would like to wait about 2 months before they go into the brain aneurysm again for another treatment.  It will likely be about two weeks before we can take him home then we will still have to travel here every two weeks for doctors appointments with the nuerosurgeons.  We are told he will need several more procedures over the next couple of years and there is still no way to tell what damage has been done to his brain.  We are told with babies “all bets are off.”  They haven’t yet decided which part of their brains will do what so there’s no way to know the long-term effects this will have on him.  So we pray every day for him to be healed, for him to live a full, whole life, for him to be a living testimony of the love and healing power of God and we believe with all we are that he will.

Our little Piece of Heaven

Our little Owen is just 2 weeks old today and already he’s taught me so much.  We know that God has a plan for him and his big heart and we are so humbled by all of the people who have prayed so hard for him for so long.  We praise God daily for all he’s done for us.  Every thing that has been placed in our path God has provided for us in an amazing way to make sure we got through it all.  I can’t imagine going through all of this with anyone but Ed, he has been so incredible and I can’t imagine how I’d get through all this without him.  We thank God for Owen, our families and friends and our community and we can’t wait to bring Owen home.

Final Thoughts

The past couple of days I can't help but remember a prayer that Ed and I prayed a lot months ago when we first began searching for a new church home - together we would pray for a closer walk with God.  Well, I know sometimes we have no way of knowing how God will answer our prayers but that is definitely what our angel has been to us, we definitely have a closer walk with God.  We had began visiting at Evangel Worship Center almost a month to the day that we found out about the aneurysm, in a way I believe God was preparing our hearts for what he knew was coming.  Just one more shining example of how God is right on time and God is always answering our prayers.

I know without a doubt that I couldn't have carried this burden alone and if it weren't for my faith and relationship with God I don't know where I'd be right now.  Some may critizice me for publicizing so openly what has been going on with my son but I feel obligated to both protect my son with a blanket of prayers and to keep those prayer warriors updated with his progress.  Complete strangers have called, emailed, and mailed us cards to let us know they are praying for Owen and that comforts us so much.  Our pastor was on his way here to see us at Shands and ended up on the phone with a Florida Highway Patrol Dispatcher out of Tallahassee who asked what he was doing on the interstate.  He told her that he was headed to Shands to visit a couple from the church who had a child down there to which she replied "is it baby Owen?"  We have no idea who it may have been but she wanted us to know she was praying for us - and that's just one of the many stories we've heard.  I hope that Owen gives others a closer walk with God too.

If you've taken the time to read all of this I thank you for caring about our family so much (and for having the patience to read this all).  I ask you to continue to remember Owen in your prayers as we are just starting out on this journey and I pray that God blesses you and your family as well.

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