Waiting...

Last week was A.WEEK...Our church had it's last service on Sunday and one of my very best friends suprised me after being overseas the past 3 years, on Monday Seth and I spent most of the day at Hopkins for appointments, another zoom appointment on Tuesday, Colton's first x-rays on Wed (he's fine), Colton's first COVID test on Thursday (he's fine) and our neighbors tree crushing our fence.  

After all of the appointments, I think the main take away is still "Wait and see", although we do have some more information.  I had a fetal MRI first thing on Monday, followed by another ultrasound with the Fetal Therapy Team at Hopkins.  They were able to read both together and are more confident in acqueductal stenosis as a cause for the fluid.  The doctor also told us that the imaging answered some important questions about her brain development that the team had been wanting to see.  The good news (or what we're taking as good news) is that other than the fluid (which is really bad and growing), her brain seems to be doing what it's supposed to.  It's forming the folds that are supposed to be forming and the nerves seem to be migrating to where they are supposed to be going.  Her cerebellum and brain stem also appear unaffected.  Her other organs also appear to be functioning just as they should.  Seth and I are taking one additional step to hopefully rule out anything genetic being the cause and give us more confidence that this is purely mechanical.  The amniocentes that we did when we got the news ruled out most things genetic.  She has one portion of a chromosome that is duplicated, but they call it an unknown variant, because they don't know if it's significant or not.  The hope is, if Seth or I also have this duplication, then we can just say it's nothing.  If we don't have it, then it's more decisions about how much additional testing is appropriate.

And decisions are not my favorite thing right now.  It's strange how the stress of all of this lies really just below the surface and most of the time I feel pretty great just going about normal life.  Then the smallest thing will set me off - not having apples when I need one, something going bad (yes, mostly food related - I AM pregnant :-)) and the tiniest decisions.  This morning Seth asked me if Colton should wear long sleeves to school and I was almost in tears.  So if you experience me being even more indecisive than usual, just know that it's because we are contemplating some really huge decisions we might have to make in the coming months and not because any other decisions are unimportant.  

But back to the doctors.  We felt pretty encouraged after meeting with Dr. Miller, the Fetal Therapy doctor who did the ultrasound.  Another aside, but please please please be kind to the medical professionals you know.  Throughout this entire COVID crisis, they haven't missed a step and continue to fight to give their patients the best care they can.  Dr. Miller went above and beyond for us. As our appointment with her was ending it was getting close to lunch time and I still had to meet with the new OB and come back and meet with the neurosurgeon.  Not only did she offer snacks, she also worked with the other providers to help us get seen as quickly as possible so that we could get out of there and eat.  She walked us to our next appointment and her whole staff made sure our coordination of care was seemless.  That's not her job, but it made a world of difference to 2 overloaded parents on that day. 

The neurosurgery consult rocked me a little bit.  I think it's part of her job, but she seemed a lot less optimistic than the other doctors we had talked to.  And that's ok, we need to hear it all.  In short, shunts in newborns only have about a 50% success rate, due to infections, blockages and just not working.  And even when the surgery is successful, there's no telling what brain damage the fluid build up and pressure will have already caused.  So then we're faced with the decision, do we even risk the surgery?  It's awful to contemplate.  I honestly felt really stuck after that appointment.  On the drive home though, we stopped ourselves in our tracks and prayed and remembered that we have a Great God walking with us and guiding our steps.  I am a firm believer that if you are seeking God in your decisions, He is faithful and won't let you take the wrong path.  There's rest in that knowledge.  There's peace in that remembrance.  

The appointment on Tuesday with the Pediatric Neurologist just confirmed that way of thinking.  She went over the MRI with us in detail and had the opinion that at this point, with the things we know right now, there's no reason not to think that the shunt surgery could be successful and lead to our daughter having a pretty great qualitiy of life.  I specifically asked about outcomes she's seen with this amount of fluid already and she confirmed that she's still seen good outcomes.  

Of course, medical evidence or not, we know we always have a reason to hope, because our God is able to do exceedingly, abundantly more than we could ever ask or imagine.  If you know Jesus, but still struggle to have that hope, please let me know how I can encourage you.  Remember, our hope is not in the miracle we are waiting for, but in Jesus Himself and His goodness.  If you don't know Jesus and aren't even interested, please keep reading.  Your support is meaningful to me and my family. And feel free to ask me questions about how we can have this crazy hope!  It won't offend me, I promise.

If you are praying with us, please continue to pray for a miracle healing for our girl.  I'll be seeing both my new OB for normal pregnancy stuff and the Fetal Therapy team for ultrasound monitoring every other Monday.  Please pray for continued good brain growth and limited fluid increases.  We are hoping to be able to hold off on scheduling a c-section until around 38 weeks, so there's still a ways to go.  Pray that Seth and I would be able to fully cast our cares on God as we are in this time of waiting.  Pray for peaceful sleep.

Thanks for reading and praying.  Writing all of this out helps me immenesley and keeps me in the right mindset (and sometimes brings me back to the right mindset when I've wandered).  Love you.

He cried too

It's been a good week.  Life has felt pretty normal and we had a glorious 4 day weekend spent with friends and family.  We are so thankful for these bright moments.  

Yesterday was emotionally draining, but still good.  I met with some of the neonatal palliative care team over zoom yesterday.  The NICU Chaplain and 3 neonatologists from Hopkins were on the call.  No new information, just more support and details on possible scenarios once she's born.  It was extremely helpful to hear from the doctors who've seen babies in our situation and could give us some concrete possibilities and a better idea of what her first few days and weeks might look like.  It was also extremely hard and emotional to walk through the worst case scenarios and the decisions we could possibly be faced with.  I cried.  Like a lot.  Like ugly cries over the computer in front of people I just met.  And they sat with me and let me process.  It's weird, because I knew the range of possibilities, but walking through their reality was just a different experience.  The Doctors and Chaplain reiterated multiple times that they are hoping with us.  What an amazing group of people.  Although the call left me emotional for the rest of the day (and even a little still today), I also received new infusions of hope and support.  The Chaplain has texted since then to check in and give me her number and she wrote a long e-mail summarizing our call, since Seth wasn't able to attend. 

One thing that the Chaplain reminded me multiple times yesterday was to be kind and gentle with ourselves, as this is a very stressful and difficult journey.  Honestly, that's hard for me.  Because I've walked in the peace that God has brought me through your prayers, I feel sometimes like being emotional is letting myself down - failing at keeping my mind in the right place.   As I was praying through this yesterday, the thought came to me that you can fully trust Jesus and still just need Him to hold you sometimes.  And He wants to do that.  It's funny.  As I was medidating on that, my mom texted me a very similar thought.  

There are going to be triggers that I have to work through.  To be frank with you, the abortion discussion this past week that has been all over social media brings up some emotion, as termination of our pregnancy was one of the first options we were given when faced with our baby's possible prognosis.  In fact, even after we firmly shared with anyone who listened that we were firmly commited to our child and this pregnancy, wherever that led, doctors still left that option dangling.  I'm not trying to make any sort of political or moral judgement here at all.  I'm just encouraging anyone taking part in the debate to remember that there are real people behind these decisions and to speak with kindness.  Sorry for that aside.

There are going to be ups and downs on all of the roads that all of us walk, and there is a God Who's Name is Comforter.  In fact, Jesus knows and understands grief well.  He wept when Lazarus died, even knowing He would be alive again soon, even though He is God Himself.  

Thank you again for walking alongside us.  I am humbled when I think about all of the people praying for us.  Some ways to pray would be: 

Continued peace and comfort for our family

That I would baby able to carry the baby into December and as close to her due date as possible (being premature adds complications and would delay her shunt surgery)

Pray for Seth and I to be on the same page as we walk through difficult decisions we could need to make in the future

For a miraculous healing of her brain

That many would know God's goodness and greatness because of this sweet girl's life

Good does not always equal easy

 The past few days have been difficult emotionally for me.  I can't really explain why.  Nothing has changed.  No new appointments or information.  I still know that God is in control, He is good, His plans are good, He is love and He loves my family deeply.  None of that is different.  I know that it's true and I believe it with all my heart, but last week I was full of joy and this week I'm just weepy.  I guess sometimes, in the midst of His goodness, we are still faced with hard.  And He gives us the strength to keep moving forward.  

Isaiah 43:2 "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."  I imagine that even though you won't be burned, it's probably still pretty hot walking through the fire.  I think this is such a good picture of the hard and the good together.  We are protected and safe.  He is walking this journey with us, but sometimes we'll still go through hot spots.

I think these are the times when it's the hardest to keep my eyes set on the One who holds all life in His hands, but when I'm able to it's so much easier to see the little miracles that He's working all around - like when a loved one shares just the right thing at just the right time.  Yesterday, my cousin was texting me and said "There is a reason God is letting you raise this baby."  That instantly brought me out of my weepy spiral back into the hope of God's good plan.  2 friends texted last night as I was growing a little sad and fearful before bed.  Just the right words at just the right time.  Seth's dad texted me this morning that he thought I might get some encouragement from a song by CeCe Winans - Believe for it.  He didn't know I've been struggling this week and he also didn't know about my blog post last week where I talked about that song popping up at multiple crucial times.  A friend also shared last week that she read that blog post last week before work one day and then it was playing the moment she started her car.  I could give you so many more examples of friends and family sending a devotional or verse that feels like it was written just for me in that moment.  

Thanks for reading this and walking with me.  It helps me so much to write these reminders out, and I hope it encourages you too, in whatever journey you are walking right now.  Community, both near and far, lifelong and recent - God definitely uses people to be His love notes to us.  In the past I've really had a hard time knowing what to do when friends and loved ones are struggling or just going through a difficult time.  I'm learning now that even if you don't think you know the right words, just reach out.  If something comes to mind that you think might help, ask specifically and directly if they would like you to do that for them.  The day we first found out the news, our close friend and pastor reached out and said, "Can we bring your family Sparticus pizza at 6 pm tonight?"  It was exaclty what we needed.  I couldn't have chosen what to eat or asked someone to bring us something.  (And this is not an underhanded way I'm requesting food, lol - We are good now - just an example of how something small can go a long way.)  So much love to all of you!