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! 

Update

 A lot of people have been asking my how I'm feeling.  That's such a hard question to answer.  I guess the best answer is "a lot."  I just feel a lot right now.  Grateful, sad, hopeful, afraid, blessed, overwhelmed...and the list goes on.  

Yesterday was a super emotional day.  I sat down to journal and pray in the morning and went to look for a verse that has really comforted me in difficult times before.  The verse I was actually looking for was Psalm 27:13-14 "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living.  Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord."  Instead - I ended up in Psalm 37 and was immediately drawn to the beginning of verse 7 which says "Rest in the Lord and wait patiently for Him.".  At this point I was sensing a theme.  Waiting is hard, but that is our current season, so we will do it and have peace for now.

I went to church and sobbed the whole way through (which, I don't recommend while wearing a mask).  When we started singing Cece Winans believe for it, the sobs came harder, as that was the exact song I listened to on the drive over.  Friends, the road is hard, but God is dropping us love notes all the time.  Then the message felt like it was just for me.  One of the questions posed was, "Is the object of your prayer the miracle itself, or the One who makes miracles?" Particularly relevant right now.  At the end of the service a teenager came to the front to share something that had been on her heart.  I wish I could repeat her words exactly, but she was talking about how God had been impressing on her the importance of waiting on Him and that there was someone who was in the middle of a battle that needed to hear that God is in the waiting.  So we wait :-)

I went into today's appointment with the Fetal Therapy doctors at Hopkins with the mindset of continuing to wait, knowing that we have surrended it all to God.  It was a LONG ultrasound (baby girl is a wiggle worm like her big brother).  That definitely created some anxiety to fight off.  When we finally got to sit down with the doctor though, the news was actually somewhat optimistic.  The situation hadn't changed.  Still way to much fluid. But, it appears that the cause of the fluid is most likely the result of an aqueductal stenosis - a blockage between the 3rd and 4th ventricles of her brain.  This is really the best cause we could hope for, because it means her brain wants to develop, the fluid just won't let it.  So, when she's born, the pediatric neurosurgeon will place a shunt in her brain to drain the fluid and we'll see how her brain develops from there.  The prognosis could vary greatly, but if this is actually what's going on, it's not fatal.  We'll continue to pray for complete miraculous healing of her brain.  The doctor said she has seen blockages resolve on their own before, but never in a case this severe.  But God...We know He is in control of this entire process and will bring about His good plan.  And we have hope.  And peace, no matter what the outcome is.

It's not a coincidence that we are in a town with some of the best medical care we could have.  It's not a coincidence the songs and verses the Lord puts in my heart at just the right time.  It's not a coincidence when someone reaches out, just when we need that encouragement.  

I'm so grateful that He draws near in the middle of our deepest fears.  We are so thankful for your support, encouragement and prayers and are excited that you are joining us in seeing what God does. 💗

Why not Me?

 After 5 years of waiting, we finally had the result we had been hoping and praying for...I was pregnant! Colton would be a big brother!  We would be a family of 4.  After just moving out of our townhouse into a home with room to expand, we were going to do just that.  Now, the year is 2021, so COVID, in addition to walking through countless hardships with friends and family over the past 2 years, has caused me to not place very much confidence in the things of this world.  The good and the bad are all very temporary and any control we think we have is actually very little.  So we were cautiously hopeful.

I had some complications early on, but was assured by my doctors that there was no harm to the baby and things were still going well for us.  We told those close to us at that point so they could pray with us.  From week 5 on, we've had a community praying for this sweet child's health and life.  I'd love for you to join us in that prayer.

Early last week we received some very tough news about our new baby.  At our 20 week anatomy scan ultrasound we found out that our baby's brain was not developing properly.  The first thing the doctor said when she walked in the room were the 3 words you never want to hear a doctor say - "I'm so sorry."  Cue shock and confusion.  What is there to be sorry about?  We just saw all 10 fingers and all 10 toes.  A nose and sweet little lips.  Kindneys!  Their heart beating away with no problems.  We saw the brain for goodness sakes.  Unfortunately, we didn't realize that all that black we saw in the brain wasn't tissue, it was an extreme amount of fluid.  The medical term is severe ventriculomegaly.  In fact, it's very severe.  At this stage in development, doctors expect to see less that 10 mm of fluid, closer to 6.  At 15 mm, they classify it as severe.  Our baby had 17.7.  A very small amount of tissue could be seen around the very outer rim.  Until we figure out a cause (which could be so many different things), we won't have a prognosis, but in this doctor's estimation, the likelihood of a healthy child was minimal.  

"Now, we have this hope as an anchor for the soul, firm and secure." Hebrews 6:19 We believe our God is bigger that this issue.  We believe He is the ultimate healer and we have hope that He will miraculously heal our baby.  It's a strange thing to hold supernatural hope and and hard reality in the same hand, but that's what we're doing.  We won't bury our heads in the sand and hope it goes away.  We will proceed with testing (although there is absolutely nothing they can do to help while the baby is in utero) so we will have an idea of what kind of care the baby will possibly need when they are born.  

We are counting our blessings.  We live so close to one of the best hopsitals in the world, so we are thankful we'll be able to work with the amazing doctors and pediatric surgeons at Johns Hopkins Hospital.  It's not a coincidence that Seth's sister happens to work with those very surgeons and she has already been an invaluable help in getting advice and resources for us (and just being an incredible support).  It's also not a coincidence that my dear friend is friends with a doctor there who's team will be providing us direct care.  We already have so many friends and family on our team and praying for us and those prayers our working.  I am living and not hiding in my bed right now, and I have been able to sleep peacefully at night.  If you know me and my heart that tends towards anxiousness, you know those are miracles resulting directly from prayers.  Seth is off this month and we already had a vacation planned this week - time to reflect, decompress and press in to God.  Our almost 5 year old continues to thrive and bring joy at every turn.  My job is extremely flexible and my coworkers are amazingly supportive and understanding.  We are reminded by friends and family all day every day that we are loved and are not alone.  This all helps us keep our focus on the One who carries us through all of our troubles.  

I'm not going to sugarcoat it...that sadness and fear frequently still creep into my mind and heart.  Everytime Colton kisses my belly and talks to the baby, it takes everything I have not to collapse into a pile of sobs.  When I feel the baby practice their karate moves one me, I used to burst with joy, and now it reminds me of the uncertainty we face.  And sometimes in the quiet moments, it's just hard.  I think about things like - should I still set up the nursey? What will Christmas look like now (we are due on 12/26)?  I pass out at hospitals, how in the world will I care for a medically fragile baby?  Will I even bring my baby home from the hospital?  None of this is helpful I know - and none of it is even true - we have NO idea what God has planned.  I medidate on this verse, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Philippains 4:8.  This is right after he tells us not to be anxious for anything but to bring our requests to God with thankfulness.  The truth is that God loves us and loves this baby and that this journey is hard, but He promises to walk us through it.  

I haven't really asked Why Me? Why Us?.  I think the temptation is there, but before this even happened, I would sometimes ask, "Why not us?"  I've seen the worst of the worst happen to the best of the best. It's not fair, but that's across the board.  I don't want this to be happening.  This is not the road we would have chosen, but I'm so thankful God is meeting us here and we are experiencing Him in an even deeper way.  

So for now we wait.  A pediatric neurosurgeon told Seth's sister that the best thing we could do is try to live our lives as normal as possible.  Please pray with us in this waiting.  For God to fully heal our baby on this earth.  For strength and peace as we wait.  For closeness to Him as we continue on this journey.  For Colton, that we could explain things in the right way and the right time and that his faith would grow.  

Thanks for reaching out and checking on us.  It makes a huge difference when we're reminded that we're not alone.

Love is kind

The train was late.  The crowd was already getting uncomfortably close.  Inconvenience began to boil up inside her.  Next to her, the man was mumbling.  Talking to himself or trying to communicate with her, she couldn't be certain.  Train, please come quickly.  She took the steps onto the train directly behind his tall, malnourished frame, one slow step at a time.  Her heart softened.  As they entered the crowded aisle together, strangers began offering this elderly gentleman their seats.  He preferred to stand.  Their kindness settled inside her and brought a smile to her face.  At the next stop, seats opened up and she found herself next to him, sharing a seat with his bag of books from the library.  She smelled that sweet alcohol smell as he apologized in his soft mumbled words for taking up so much room and told her about how his mother always made him give up his seat for ladies.  He made her uncomfortable.  She had to get close to understand his speech and the sun was in her eyes as she looked his way.  Not wanting to be rude, she smiled and nodded.  The plastic bag on his lap was giving him trouble; his swollen fingers couldn't wrestle the knot open.  Minutes passed as the verse played in her mind "Love is patient, love is kind..."  "Sir, can I help you with that?," she finally asked.  "Oh no, I can get it, but thank you so much.  You are so nice."  The struggle continues as soda cans drop from the bag and roll to the seat behind them.  She turns around and the ladies behind them return her smile as they load up her arms with the goodies that reached their feet.  One can springs a leak as it hits the ground.  He holds it still with his bright white tennis shoes until he can manage to open the bag.  This time, he lets her give the knot a try.  He notices the ease in which she works out the knot, and showers her with thank you's and blessings as she fills the bag back up with the sodas, cigarettes and candies that had escaped.  She shows him the hole in the bottom of the bag and they work together to rearrange his books (his most prized possession, he tells her) to secure his bag of snacks.  It's still hard to understand him, but he's expressing his surprise that someone would actually help him; his gratitude - that he'd still be working on the knot if not for a friend to lend a hand.  "I hope your husband knows he's got a good woman!  And I'm not trying to be fresh.  This is the nicest train ride I've ever had."  As the train slowly pulls into the station, she wishes him well and tries to steer clear of the Pepsi puddle near her feet.  The train starts moving and she feels a tap on her shoulder from behind.  "That was really nice of you.  Most people wouldn't do that.  Thank you."  Embarrassed, she responds "No need to thank me.  Just been wondering if it would actually make a difference if we all tried to love each other a little better.  Thought I would give it a try."  She feels awkward, but maybe, hopefully, it will remind people of good and love and beauty.  And that it's not that hard.  They share a certain bond as the soles of their shoes, sticky from the man's soda, noisily exit the train at their stop.  And they go home changed by a simple interaction with a man, his books and his plastic bag.

...yet beauty remains

I haven't felt too inspired to blog lately, but today, as I was letting the darkness of my city's situation and all of the media hype overwhelm me, God gave me a little tap on the shoulder.  I thought I would share...

I've been glued to the news coverage of the riots in Baltimore - frustration, sadness, anger, annoyance, disbelief - all emotions running through me.  Lately, I've been catching myself saying "This world is becoming an ugly place.  What's going to happen next?"  Today I felt that gentle nudge that God gives you when He wakes you up from your self involvement.  As clear as day, I felt that still small voice tell me, "What's going to happen next?  Valerie, you already know how this ends.  Just a few weeks ago you celebrated it.  When Jesus overcame death, He overcame the world and the powers of darkness.  He proved that He is the only One with power in this world.  Don't forget this, He has already defeated the powers of Hell - now live like it!"

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  John 16:33

It's so easy to let the darkness overwhelm us, but we know that where there's light, darkness has to flee.  Light has power over darkness.  We see it in science; if you light a candle in a dark room, the light always overcomes the darkness.

"The light shines in the darkness, and the darkness has not overcome it" John 1:5

The images that we see on Facebook and TV are ugly.  But there is still so much beauty.  I've seen people posting beautiful prayers.  I've heard strangers on the light rail promote peace among one another.  I've seen true reconciliation.  Yet it's still much easier to focus on the ugly.  As someone who struggles with anxiety and depression,  I know this all too well.  When we focus on the good, though, the bad gets so much smaller.

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."  Philippians 4:8

So, how do we do this?  To me, the answer is clear - Love.  I won't quote Rob Bell and say "Love Wins" (because truthfully, I haven't read the book and don't want to get into a debate), but I do know that the Bible tells us this: Love never fails! (1 Corinthians 13:8)  The Light of the World lives in those who believe.  He certainly doesn't need us to be light, but He allows us that privilege.  Let's be light and show love together.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres." 1 Corinthians 13:4-7

How would things be different if I was more patient and kind; if I stopped envying others and put an end to my boastfulness and pride?  What if I honored others above myself and didn't get angry, but let things go?  Whould it promote change if I didn't buy into the media hype that "delights in evil" but remained constant in speaking truth?  Can I be more protecting of those more vulnerable, trusting, hopeful and persevering?  Want to try it with me?