Wednesday, July 28, 2010

Saying the things I don't know how to say

We are so thankful for all our friends that are praying with us as we navigate through this time.  I have kept every email that I've received and turn to them for encouragement when I find it difficult to pick myself up or have particularly rough moments.  And I've noticed that sometimes our friends are able to put words to things that I'm feeling and working through but couldn't voice myself.  My favorite Finnish friend has a much better command of the English language than me.  Throughout our relationship she has been able to hit the nail right on the head and help me process through all the thoughts that are moving around in my brain.  She has a gift for saying the things that I don't know how to say.  In a recent email, she wrote about the reality of blessing in difficult situations.  It's easy to say we're blessed when things are peachy, but what about when things are not so perfect by the world's standards?  I've had several people tell me that I'm taking this really well or that they're surprised by our strength.  To these people, I say thank you and should probably mention that there are  definitely some dark moments where I don't look so put together and feel pretty weak.  But I'd also like to say that I feel absolutely blessed knowing this little girl is on her way.  As Sari put it:

Lady Hawk is a little miracle given by God in all possible cases; perfectly healthy, or with some issues, needing surgery, or not.
I am sure God does not want any of us to be sick, but he does allow it, and it does not take any of the blessings away. In fact, I know that God can bring about blessings through the nasty things that do happen to us.
For the last three years, I have been angry at the ER doctor who sent me to surgery for my first miscarriage.  Not only are we still paying the hospital bill for the D and C, but it was a very difficult recovery emotionally and physically.  That nasty scar that I didn't even know I had showed up on my 21 week ultrasound and caused enough concern for a follow up scan.  The scar is gone now, but I am so thankful it was there.  I can't know what would have happened without that 28 week scan.  I do know that with the information gathered at each scan we are able to rule out different things, plan for different outcomes, and cover this little lady in prayer in a very intentional way.  And I do know that her future is a lot brighter with all this information.  I don't think that I went through the trauma of my first loss to have a scar on my scan.  But I know that I'm less angry at the ER doctor now.  And I'm thankful that God used it to bring about this little blessing.  These are the things I'm processing through each day.  I'm so thankful for friends that help me work my way through it.

Wednesday, July 21, 2010

33 Weeks

I had my 33 week scan today.  Lady Hawk is looking as cute as ever.  Her head is measuring about 7 weeks ahead.  The rest of her body is right on target and working great.  My perinatologist decided she wants to be certain that her lungs are developed before we deliver.  We'll have another scan in three weeks (with two ob/gyn appointments in between), an amniocentesis right when I hit 37 weeks, and delivery via c-section around August 16th.  After she's born, she will probably have her shunt placed within the first few days to begin relieving the pressure on her head.  I don't know what happens after that.  But I'm alright with that for now.  I've realized that I'm more comfortable with a vague prognosis at this point, which is good because that's all we can do at this point.

Here are just a few little snapshots of what is going on inside my head and heart:

-Joey comes home on Monday.  I'm a day away from counting down the hours.

-My doctors have all been wonderful.  I feel so blessed and fortunate to have these wonderful men and women advocating and caring for my family. 

-I can't wait to meet our baby girl.  She is going to be loved to pieces.  We feel so fortunate to have this little gift coming our way.  Our prayer has always been that she would be exactly the person God created her to be.  We are so excited to see what that looks like in real time!

-Yes, a lot of this is difficult.  My eyes well up with tears often.  But I don't feel defeated.  I don't feel lost.  I feel very hopeful.  I take comfort in the knowledge that God knows the outcome of this situation. 

-We have an amazing support network.  So many people are praying for little Lady Hawk and hoping for the best possible outcome.  She is smothered in prayer. 

-Having a baby in 4 weeks is a little daunting.  I don't feel prepared and need to make many trips to Babies R Us between now and then. 

-They've done a few 3D ultrasounds at my appointments.  Baby Hawk looks a lot like Papa Pandiani's baby pictures.  She might just carry on Sarah's nickname of "Little Bill." 

I've had several people ask me questions about hydrocephalus, shunts, procedures, etc.  I'm going to try and address some of that here.  But for any anxious readers, I've put some informational links on the right hand side of the blog. 

Friday, July 9, 2010

THe Hawkins Family Update

In my last post (a whole 3 months ago!), I shared our exciting news about our pregnancy.  Shortly after that post, we found out we are having a precious little girl.  The ultrasound tech noticed some scar tissue during the scan that needed to be looked at again as the baby grew.  We were reassured that it was probably nothing and that this was just a precaution.  We joked that it wouldn't be a normal Team Hawkins appointment without at least one speed bump.  And we left our 21 week scan bubbling with joy and an appointment card for a follow-up scan at 28 weeks.  Joey left for his work rotation at the beginning of May, I headed up to Alaska to visit some favorite friends for a week, and life went on as usual.  I eagerly awaited my 28 week scan to get another look at our little lady.  I wasn't worried at all.

Since Joey was/is out of town, my step-mom came with me.  As the tech did the ultrasound, she talked us through different body parts we were looking at and different measurements she was taking.  I noticed that the head was measuring 2 weeks ahead, but I've heard so many stories of the vast differences in growth rates that I didn't think anything of it.  She showed us the heart, the kidneys, the bladder, the stomach, little legs kicking around, little hands waving, confirmation that this is a little lady, and a nice long look at the spine.  She mentioned that she was having a hard time finding the scar tissue and wanted to confer with the perinatologist (high risk pregnancy doctor) and look at my old scan to see where she should be searching.  She came back a few minutes later with the perinatologist who told me that they couldn't find the scar tissue.  She scanned through the screens of the ultrasound and said, "Are you looking at the screen?  This shouldn't be here."  She went on to explain that the left and right ventricles of our baby's brain were measuring twice the normal size.  She used words like "concerning" and "serious issue."  She then told me that she wanted me to meet with the genetic counselor again to talk about testing options.  We had met with the genetic counselor after my previous scan due to a normal variant in the baby's heart called a bright spot.  At that appointment, we decided not to do any testing and were encouraged not to by the counselor as it had a higher likelihood of false positive than anything actually being wrong.  At this appointment she again said that the testing available wouldn't tell us anything we didn't already know and would only rule out things that we had already ruled out.  At this point I was told that the preliminary diagnosis for our baby's condition is something called hydrocephalus (water on the brain).  I was walked through the various outcomes of hydrocephalus ranging from a simple brain surgery after birth (simple brain surgery, that sounds like an oxymoron) to developmental delays to motor skill delays to, well the list got a little scarier from there and we're not crossing that bridge of worst case scenario.  She explained that we can only guess outcomes at this point and we'll have to wait and see as the pregnancy progresses and as the baby develops.  One thing I held onto as we met is that she emphasized this was not a question of survival for our little lady, more a question of what life could look like.  I left the appointment with another scan scheduled for two weeks later and a very vague view of what was wrong and what could go wrong. 

I am now almost 32 weeks pregnant.  At my last perinatologist appointment, the diagnosis of hydrocephalus was confirmed.  At 30 weeks Baby Hawk's head was measuring about 4 weeks ahead.  I've been told to expect to deliver around 36 weeks most likely via c-section.  Between now and then I'll see either my ob/gyn or my perinatologist every week (starting next Thursday).  At each appointment we should get a little more or an idea of what delivery and post delivery will look like for both me and the little lady.  And each moment between now and then, I try to concentrate on the things I know and not dwell in the things that might happen.

This is all a lot of information for one update, but at the same time I feel like I lack so much information.  For the sake of time and in an effort to actually get a post up, I'm going to end this update here.  In the next few days, I hope to post some about the processing we've been going through.  We've decided that this blog will be our way of getting information and updates out to friends and family.  The tricky part is actually doing the updates.  I know that as time goes on and appointments become more frequent, there will be a lot more information to get out.  But for today, I'm going to enjoy the sunshine and try to stay cool in my non AC apartment!