Monday, February 28, 2011

Here's a quick and dirty post tonight to bring you all up to speed (sorry, I'm tired).

All good things tonight.  Friday we went to have a biophysical profile done - essentially a hopped up sonogram.  At the previous two sonograms, the baby's head was measuring about 24 weeks in size.  This time, 26 weeks.  Honestly, we were hoping for more, but we're truly thankful there's progress being made.  We are moving in the right direction.

This afternoon Shawna received a phone call from the PA at our fetal maternal specialist's office.  She had some additional results to share with us from the amniocentesis tests.  We knew the 13th, 18th, and 21st chromosomes had checked out okay - today we found out that all 46 chromosomes are accounted for and appear normal.  Thank you Lord!

The lab is now going to proceed with the next round of testing.  They are looking for Miller Dieker syndrome.  We're praying that is clear as well.

We meet again with the OB on Wednesday, and hopefully he's talked with the fetal maternal and come up with a plan for birth.  The last few days have been a great stride, and we believe things will continue that way.

“These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.” John 16:33


Thursday, February 24, 2011

We’ve had several requests for an update, so I’ll offer my thoughts.
Monday afternoon, we got a call from the lab in Dallas with the early results of the amniocentesis work up.  They were looking for three major indicators of genetic anomalies – trisomy 13, trisomy 18, and trisomy 21.  The good news is that they did not find any of those.  That is a great encouragement to us and helps build our hope every day.  I guess the downside is we still aren’t sure if there’s anything else that will show up, and the rest of the results will likely take 2-3 weeks.  There’s a strong possibility that our little boy will already be with us at that time.
Which brings us to yesterday.  Shawna had her weekly appointment with her OB to monitor the baby.  Movement is still good and heartbeat is still strong.  Shawna shows no signs of labor at this point.  That brought up the discussion of labor/delivery timing.  There’s seems to be a very slight differing of opinion between our OB and our fetal maternal specialist on timing and method of delivery.  Our OB would like to try inducing labor at 39 weeks, which would be two weeks from yesterday.  They are going to put their heads together and come up with the best solution and delivery plan.  We trust they’ll make the best decision.  One way or the other, I’m having a kid in less than 3 weeks!  The scariness of that has re-entered my mind! J
On the personal side, Shawna and I are doing really well right now.  We have a peace and calm about the situation in general.  We have been inundated since day 1 with calls, emails, cards, and texts pouring out prayers, love, support, and tears.  We stand back in awe at this point.  Three weeks ago today, our life was turned upside down and shaken violently.  The barrage of thoughts and feelings we’ve experienced is nearly indescribable, but somehow, every day, God has showed up through all of you and carried us through.  Incredible.
It’s a situation I pray we never endure twice, and a situation I pray you never know.  But we have received so much positive feedback and reports from those around us who are being touched and blessed and ministered to through our ordeal.  It’s very difficult for us to see that from the inside looking out, but we’ve known since the beginning that there is a purpose for everything we’re facing or will face.  It is a humbled and honored thought we carry to see these things happening and moving.  Life is different now, as is our perspective.  When I have the opportunity to properly collect all my thoughts, there’s a great deal I’ve learned I hope to share with you all.
For today – “Trust in the Lord with all your heart, and lean not on your own understanding” Proverbs 3:5 (Thanks, Andi!)

Sunday, February 20, 2011

I just wanted to take a short moment tonight to say a few things.  We're blessed.  We have been surrounded by family and friends who are amazing.  The love shown to us from all of you in the past two weeks has been something I might not have fully understood if we weren't in our current situation.  We are humbled by you all and pray that your selfless gifts are returned to you over and over.  Our hearts are encouraged and strengthened by each one of you.  We're indebted to you and grateful for you beyond words.  Thank you.

Standing in hope.


"But if we hope for what is still unseen by us, we wait for it with patience and composure." Romans 8:25

P.S. Just like his mother, he is already making a mess in my house -

Wednesday, February 16, 2011

My alarm screamed at me far too early this morning, but it was time to head to the hospital for Shawna’s amniocentesis.  We got there just after 7 am and began preparing for the procedure.  Not being familiar with the actual process, there were some very slight anxieties.  We were in a delivery room at BSA as a precaution incase Shawna went into labor, which is a risk of amnio.  Dr. Holmes arrived around 7:35 and made sure everything was ready.  We were wrapped up by 7:55.  The procedure itself took about a minute and half and was nearly painless (easy for me to say).  Overall, it seemed to be a big ado for nothing…but that’s precisely what we wanted.  The next hour or so was spent hooked up to a monitor to make sure the baby and Shawna had no reaction.  Somewhere in this whole thing, someone felt the need to shove a needle in my arm too and send a couple vials of my red juice along for the ride.  The needle was big, and it really hurt – I deserve sympathy here. J 
This afternoon was our visit to the NICU at BSA and our appointment with the neonatologist, Dr. Haider.  He has reviewed all of our tests and reports to date and wanted to go over it with us.  He helped familiarize us with the usual workings of NICU and what choices we’ll have in the course.  He and Dr. Pickens will be running the show shortly after the first breaths are taken.
The initial findings from the test today should be back around Monday, and the full work-up will take about two weeks to complete.  As soon as we have something to relay, we’ll give you another update.
Two weeks ago, our life was really good.  I was finally to a place in my thoughts where I was eager to be a dad.  Most of you know having kids wasn’t my top priority yet, so I’ve had to go through quite a transformation in the past 6 or 7 months.  Lately, I’ve been quietly excited about what this is all really going to mean.  Before the whirlwind our life has become, I’d never had a thought about making an end of life decision for a baby.  Today, that is the exact discussion we had with Dr. Haider.  That is crushing to process.
It doesn’t mean we are giving up, and it doesn’t mean our hope is gone.  It does mean our spirits are puny today, and we just don’t know what to do sometimes.  But I don’t want to leave this on a sour note, so believe with us Jeremiah 30:17, “But I will restore you to health and heal your wounds declares the LORD.” I feel like a broken record now, but your outpouring of prayers and words has meant the world.

Monday, February 14, 2011

The word of the day is “confusion.”  At this point, we’re not sure if we should be happy or sad or somewhere in between.

We met this morning with Dr. Wilson, the geneticist.  He is a very nice man and seems quite intelligent.  There isn’t much he can do for us at this point, but he was able to review some of the things about genetic issues we’ve briefly discussed with some of the other doctors in greater detail.  He will come into play much more after our son is born and further testing can be done.

Our original appointment and plan was then to see Dr. Quershi, the local pediatric cardiologist.  That did not happen.  The office found out we saw a cardiologist in Dallas on Friday and told us we were “double dipping” and insurance was not likely to pay, so we didn’t even meet him.  Instead we visited for a while with Dr. Holmes (our original fetal maternal specialist). 

After grilling several doctors about everything we can get our minds around, we finally made another decision.  Wednesday morning, Shawna will be visiting BSA to have the amniocentesis drawn.  This should give us an idea of what is going on genetically.  This decision was considered and wrestled with a great deal because of the risk associated with pre-term birth, among other things.  Dr. Wilson helped put our concern of the test/pre-term birth affecting brain development at rest, so away we go.

The overall tone of today was different from our last set of appointments.  The level of concern (at least from the doctors) doesn’t seem as high.  We’re not really sure why this is, because nothing has necessarily changed as far as facts - and thus our confusion.  It’s almost an eerie peace, but hey, we’ll take it for now.

So, thank God for some peace (and hopefully some rest), and pray for no incidents with the amniocentesis on Wednesday.  We also see Dr. Carrasco (OB) and the neonatologists at BSA on Wednesday.  We will give another update at that time.

Your prayers and comments are amazing and appreciated.


Saturday, February 12, 2011

Yesterday was one of the hardest days of my life.  We got to Dallas Thursday evening and had a great dinner with some of our friends.  Our appointment with Dr. Magee (fetal maternal specialist) was at 3.  God definitely put this man in front of us for a reason. 

His knowledge, genuine concern and compassion, and his helpfulness were greater than anything we could expect.  He spent about an hour with us doing the sonogram and discussing different things he was seeing and not seeing.  His overall message to us was not much different from what we have heard several times at this point – the baby’s brain is severely small and does not appear to be growing.  He suggested that we do an amniocentesis so they might get a better idea of what is going on genetically.  He felt this would give us the best information to make decisions for the safety of the baby and the safety of Shawna.

He and his staff immediately set us up with an appointment at Children’s for a fetal MRI.  It was 4:30 when we left Dr. Magee’s office, so we got the adventure of making it across downtown right at the beginning of peak traffic.  It took us a bit, but we made it without issue.  Dr. Rollins (neuro-radiologist specialist) was gracious to stay late and fit us in.  After Shawna and I spent 30 minutes sealed in the room with ear plugs, the MRI was complete and Dr. Rollins brought us back to review what she’d read so far from the test.  She again confirmed what everyone else has told us so far.

At this point, it’s about 6 pm, and we received instruction to have Dr. Eapen (pediatric cardiologist in Dr. Magee’s group) paged so she can meet us back at their office for her portion of the evaluation.  After another stint in traffic, we made it back.  Dr. Eapen, again going far beyond what we expected, took time away from her family on a Friday evening to be with us and help us.  She gave us the best news of the day.  Overall, the baby’s heart looks really good.  Form and function are as they should be.  Last week, there was thought to be a problem with blood flow, so this is the direction we’ve been praying to see.

We left her office about 8:30 pm and grabbed a quick bite to eat before getting on the road to come home.  Home is where we wanted to be.  Shawna’s parents were with us and got us home safely at 4:30 am.  So here we are.  What now and what next?

Our hearts are drowning in devastation – to hear professional after professional tell you there’s little chance your son will live – but through our tears we are still asking and believing for a miracle.  Asking that our son will be made whole and standing on Isaiah 53:5 – “by his stripes we are healed.”  So please don’t find ignorance or arrogance as we press forward with our plans, baby showers, etc. as we celebrate life.

Thank you for standing with us.  The outpouring of prayers, love, and support is beyond tremendous.


Friday, February 11, 2011

Zane and I decided to start this so that we can keep everyone informed of all doctors appointments and any information we can. We are going to have a baby boy join our family on March 15th. The past 35 weeks have flown by for me. Up until a few weeks ago I have had a great pregnancy with very few complications and no sickness.

January 6th, 2011
We went in for what we expected to be our last ultrasound. The ultrasound tech did the ultrasound and took all his measurements, while we sat and talked about how cute he was (my mom came with us). Most of my ultrasounds have been 4D, but this time we could really tell what he looked like. He was being difficult for her to get the measurements she needed for my doctor. He would not move his hands out of the way and he would not be still so she could get some good pictures. I guess he cooperated enough and she got what she could so we went over with her report and ultrasound pictres to see my OB. My doctor told us the ultrasound showed that the baby's head was small and he was surrounded with extra fluid. My doctors main concern was the excess fliud and he decided the head size may have been positional because his head was snuggled up against my placenta. He sent me for the 3 hour glucose test to test me for gestational diabetes (diabetes can be a cause for the extra fluid) and said he would do the ultrasound again in 2 weeks at our next visit to measure the babies head again.

January 18th, 2011
We went back to see Dr. Carrasco (my OB) and found out that I was not diabetic, which was great news! Then we started the ultrasound...the good news was he had turned into position with his head down. The bad news was his head had not changed sizes in the past two weeks. Dr. Carrasco decided we needed to see a Fetal/Maternal Specialist that could see more with a better ultrasound and who specializes in this area. My doctors office set up our appointment with the specialist and my doctor sent me on to get some blood tests run for the specialist to get ahead, since I was only 8 weeks away from my due date.

We did not get an appointment with the specialist until February 3rd, 2011, so I was now 6 weeks away from my due date.

February 3rd, 2011
We have an appointment with a RN who went over our entire family health history, from us to our parents, grandparents, aunts, uncles and cousins. They were very detailed. Then luckily Dr. Holmes had a cancellation so we got right into see her on the same day (these 2 appointments are normally a few days or weeks apart), otherwise our appointment with Dr. Holmes would not have been until February 15th. We were unaware there would be 2 appointments, but her office staff was great and so was she to get us worked in that day so that we could get some answers.

It did not go as we hoped.  The front of the baby’s brain is severely under-developed at this point.  It is measuring approximately 24 weeks in size, and I am currently at 34 weeks.  From what we have to go by right now, there is an 80%-90% chance he will have a fairly significant problem.  If a good deal of progress does not occur, there is a chance he might not make it. He also has some possible heart problems where his heart is not pumping the blood that it should.

They do not know what the cause of the problem is, but we will be seeing a neurologist, cardiologist and geneticist next week to run further tests hoping to determine the cause and to prepare for any treatment after he is born.  We will also be introduced to the two doctors at BSA who run the neo-natal ICU, because he will be going there immediately.  If they are unable to gather any additional information, they will be sending us to Dallas for a pre-natal MRI. Somewhere in there, we also have to pick a pediatrician and get them up to speed. We will be seeing at least one doctor every week until delivery to monitor.  If they detect he is in distress at any point, they will perform an emergency c-section. If any or his heart or brain are surgical we will need to be in Dallas for his surgeries.

We have two appointments set for February 14th in Amarillo with a geneticist and pediatric cardiologist. Then February 16th we will meet wih the NICU doctors at BSA.

February 8th, 2011
We had another appointment with my OB and discussed everything we were told by Dr. Holmes, the fetal/ maternal specialist. During that appointment we decided that the best place for us to be is in Dallas. If the baby needs any surgery after being born he will need to go to Dallas because there are not any pediatric carologists that perform surgery. I may be stubborn but refuse to be stuck here in the hospital with my baby boy and husband on their way in an air ambulance to Dallas. So my doctor got us set up to meet with a fetal/maternal specialist and a pediatric cardiologist in Dallas on Friday February 11th.

Which bring us to today...February 10th, 2011
We are on our way to Dallas to meet with the doctors and hopefully get some answers and next steps.

We want to thank you all for your prayers and support as we take this journey we know we are not alone. We really have an amazing group of family and friends and we love you all!!