Wednesday, January 4, 2023

2022 in Review

 I realize I haven't been posting on here for the majority of the year.  If you haven't been following Facebook or Instagram, here's a recap of last year and where things stand as we look ahead to this year.

Camille started 2022 with her first full day at home.  She was discharged from the hospital on 12/31/22 after a 3 week stay.  She was still working on eating so she had an NG tube.  It turned out, she just needed to come home, because all of that money that insurance wouldn't pay (and we shelled out) to have the equipment at home went to waste within the week.  She started taking bottles like a champ and hasn't looked back since!

As January progressed we noticed her head seemed to be growing pretty rapidly.  A visit to her pediatrician confirmed it was growing much fast than we'd expect.  Her follow-up MRI and appointment with her neurosurgeon got moved up and I had my first "Where are you God?" moment.  It appeared that the surgery she had in December wasn't totally working and that she would probably need a shunt to control the fluid in her brain.  It was a tough time in general, being home with a newborn and not really seeing friends because of all the sicknesses that are rampant that time of year.  Looking back, God met me in those dark moments through texts and calls from trusted friends and family and firmed up that trust and faith that start to wane as we get complacent with things going how we want!

The good news was that surgery wasn't emergent, so we watched and waited and then on Feb 23, she had surgery to have a shunt placed.  She did great with the surgery and was discharged the next day.  During the week that followed, we noticed the swelling around the site of the surgery hadn't gone down.  Her surgeon just wanted us to watch it, so we did and that very next week ended up in the ER (overnight) and admitted the next day, for fluid leaking from her surgery site.  They weren't really sure what was causing it, but went with the hypothesis that she had subderal fluid due to the shunt being set too low (not enough pressure in her head) that was pooling.  So they turned her shunt up and wrapped her head tightly to give it time to heal.  Next week - imagine our surprise to be back in the ER for leaking fluid again.  During this horrific visit I was on my own with her (Seth was caring for Colton at home) and they wanted to drain the fluid that had built up and then add a stitch to hopefully keep it closed.  I asked the resident about numbing the area first and he said that was just another needle she would have to endure, so it was better to just quickly get them done.  Unfortunately, he didn't think to ask for a nurse's or tech's assistance and instead asked me to "hold her down". Yep - that happened.  And I did it.  And we survived.  We spent the night again in the ER, but her surgeon sent us home the next day (no beds in the hospital anyway) after turning the pressure up again and hoping for the best.  Less surprisingly, we were back in the ER the next week and would remain in the hospital through the beginning of April.  Her surgeon was on vacation for this ER visit, but we were very familiar with the attending surgeon and thankfully Seth's sister (who's a pediatric nurse at Hopkins) is one of his favorite people.  To say we got the royal treatment would be an understatement.  His approach was basically that our hypothesis and treatment plan was probably backwards, since it was still not working and her swelling and fluid leaking were just getting worse.  He also wanted to go in surgerically and clean out the wound in a very quick procedure.  We were the first case the next morning.  He did take a fluid sample to test for infection.  Anytime you have an open wound, infection is possible, and spinal fluid infection means you have to throw the shunt out and place a new one.  At the almost 24 hours post surgery mark, she was clear of infection and we were planning our escape home.  Unfortunately, the positive result showed up and she was on the docket for another surgery to remove her shunt, have a temporary external shunt placed, have a PIC line placed and start IV antibiotics.  I lived at the hospital with Camille until she was completely infection free, the new shunt was placed on 3/30 and we were discharged on 4/2.  It was tough.  She couldn't be picked up very often, because the external shunt had to be rebalanced every time you moved her.  She had lots of MRI's, lots of tests run and through it all, she showed us what a fighter she was.  She was the happiest, not sick, but difficult to treat baby the floor had.  We had some great visits - a dear friend who I never see came and sat with us in the ER while we waited for the plan this time.  We got bonus visits from Seth's and my parents and sisters :-)  A different family member would come stay with me most nights (those hospital night time feedings are rough - especially when you can't pick up baby and I had to pump on top of giving her a bottle).  Seth's sister would come up after her shifts and care for Camile so I could go home and take a real shower and a nap and play with Colton.  We got a peek at how strong Camille really is and a reminder of how many miracles our God is doing in her life.  This all happened right when my 3 months maternity leave was ending, so I was starting back to work (in a limited capacity) from her hospital room.  Thankfully my boss was extremely flexible and understanding.  I learned I can do really really hard things with God who gives me strength.  I saw the goodness in people - from the extremely caring nurses and other staff to our amazing friends and family who cared for us.  Honestly, rather than worry, I was filled with gratitude at almost every turn.  That's God people.  Don't get me wrong, I couldn't wait to go home - but He sustained us!  

The rest of the year was so much less ummm...shall we say...eventful, but with lots to celebrate.  We got to travel this summer to Ocean City to see Seth's parents and Georgia to see my parents (Seth was working so I drove the 10+ hour drive on my own with both kids - a story for another blog) and eventually Virginia in the fall.  We all got COVID and a storm promptly knocked out our power for the next three days.  Colton started Kindgergarten and has been thriving.  Camille had quarterly MRI's and follow ups with her surgeon and everything with her shunt has stayed stable.  It's currently set at the highest pressure and we'll just continue to monitor with her surgeon every 3 months.  She still sees PT through the infants and toddlers program every 1 to 2 weeks and a nurse checks her development every month.  Although she's at the later end, she's hitting all of her milestones.  She nods yes and no (mostly no), signs for "more" and "all done", eats absolutely everything, pulls up, climbs and cruises on everything, can crawl but prefers to scoot still, stands for a few seconds independently, pushes walking toys around and pretty much brings delight everywhere she goes.  She loved eating cake on her first birthday and screams if she sees me eating a treat and not sharing.  She wears a doc band (helmet) to correct the flattening of the left side of her head, from laying on that side for so long.  She gets that off next week on 1/11!  All in all she's a good sleeper, but we've had a few horrible nights of screaming sprinkled in recently, which is par for the course with babies.  

We ended 2022 with a family dance party at home, while we were isolating after a COVID exposure.  Thankfully we have stayed negative.  A few nights ago, Camille had a really terrible night (gas probably?) and it sent me into my first downward spiral in a while.  I don't know about you, but when I lack sleep, my thoughts get out of control, the what ifs run rampant and I can tend to struggle with some anxiety.  It was a good reset for me though.  I stopped myself mid spiral and refected on how good God has been to us this past year.  It was not easy, but He was near and we all grew.  It also brought to light a few areas I want to work on this year.  I feel like 2022 was a lot about survival.  And we got through and had some really bright moments.  This year, I want to be about thriving.  For me personally, that means always coming back to choosing joy, especially around my family.  For my family, I think that means relying on God together and growing in our walks with Him, really celebrating who He is and what He's doing in our lives.  I think it also means investing in a church together and getting involved.  Expecting God to move in big ways and being on the look out for what He's doing around us.  Being great friends to the people in our lives.  I'm starting the year off with a promotion at work, so being a good boss to my department and helping my team thrive is part of my thriving as well.  

Some ways you could pray with us this year:

- Please keep praying for Camille to stay on this great trajectory of growth and development!  She sees her neurology team at KKI on Monday 1/9 for her 1 year assesment

- On Monday 1/9, she also has her follow up with the eye doctor.  The glassed don't seem to have helped her eye from crossing, so we're expecting a new plan.

- Camille's next MRI and surgery follow up is 2/28.  She'll have her usual ultrafast mri (usually takes about 10 minutes) and she'll also have a more detailed MRI of her cervical spine.  In her MRI in May, the radiologist noted a small fluid pocket that was partially visualized in her imaging.  It was not seen in the Aug MRI (based on where it is located on her C-spine), but in her Nov MRI report, the radiologist said it looked like it had grown about a mm.  Her surgeon wasn't worried about it, as it doesn't seem to be causing her any pain or limiting movement that we know of, but wants to monitor.  Pray that she won't need surgery to resolve this issue.

- Pray that our whole family would grow in our walks with the Lord.  We've been churchless for a little bit, so pray we would commit to and get involved in a church.

 - Pray that I would balance my new role at work and my family well.

- Pray that our eyes would be open to what God is doing around us and how He wants to use us.

It's been amazing to see and hear how Camille's story has touched others.  Thank you for being a continued part of that!  💖

Tuesday, February 1, 2022

Waiting and Weeding

 Camille had her much awaited neurosurgery follow up this afternoon.  The good news is that behaviorally, she's still not showing signs of pressure.  The sutures in her skull (not stiches, but where the plates connect) aren't very splayed either (which they would be if her head was compensating for extra pressure).  The doctor did confirm, though, that her head circumference is growing at a rate faster than we'd like to see.  He's not at the point where he wants to say her surgery is failing, because it seems like something is working, but it just doesn't seem like it's working enough.  If he had to guess, he thinks she's going to need a shunt - BUT he wants to give her a few weeks to prove him wrong.  Because she's not showing signs of pressure and the MRI two weeks ago showed that her brain matter was growing, it doesn't harm her to wait.  The scary part is watching her for the signs of pressure (which could wind us up in the ER), but he thinks that's unlikely to happen in the next few weeks.  As I've been typing this, his office actually just called to schedule the MRI for 2/16 - so two weeks it is.

I feel like the one word that has characterized Camille's journey, from that 20 week ultrasound until today is "waiting".  During my pregnancy, we were waiting for her to be born so we could see how she was going to do.  Then she was born and we waited for her to show us signs that she needed surgery.  She had the surgery and now we wait for her to tell us if and when she needs another.  The waiting doesn't seem to end.  But I guess if you think about it, we're always waiting for something.  Is there something you're waiting for?  An answer to a question, something you've prayed for, an event you're looking forward to...?  So if waiting is inevitable, what do we do?  I went to the Bible and searched for the word "wait".  It's used in many different contexts, but 2 stood out to me.  Waiting in hope (Psalm 39:7 - And now, Lord, for what do I wait?  My hope is in You) and resting and waiting (Psalm 37:7 - Rest in the Lord and wait patiently for Him).  



What matters is what's happening during our waiting.  My mom sent me this picture this morning and told me that weeding is good prayer time.  I was struck by the symbolism in that idea.  I think during this season of waiting and praying, God is using this time for some weeding in me.  When I rest in Him and place my hope in His word, He's plucking out the seeds of doubt that have grown over the years in my life.  The lies I've let take root that tell me He doesn't really care and "you're on your own."  He's weeding out the idea that things have to happen my way for them to be good.  

I don't want to have to go through the next two weeks worrying that Camille is going to start having pressure in her head that makes surgery emergent.  I don't want her to have to have another surgery.  But it's going to be ok.  Our God has already brought us so far and given us better outcomes than anyone imagined at first.  He's not changing and we can trust Him, so we do. 

Pray for us as we wait these two weeks for her MRI and next follow up.  Pray that we would not be anxious.  Pray that Camille would remain stable and that none of this would negatively affect her development.  Thank you for waiting and resting in hope with us!







Tuesday, November 30, 2021

Distractions

 I love the holidays.  I don't even mind the busyness that comes with them.  This year has been particularly busy already, with trying to wrap everything up at work for a 3 month leave, preparing the house for a new baby (trusting she comes home), decorating for Christmas and buying and wrapping ALL.THE.GIFTS before she gets here.  The nesting bug has definitely hit me...along with the pregnancy discomfort that comes with carrying a bigger baby.  

It hit me over the weekend, when an emotional moment came out of nowhere, how distracted I've been.  It's so easy to forget about all God has been doing these past few months, to draw us so close to Him as we trust and hold on to hope.  I've said this before, I wish this wasn't our reality, but I'm so filled with thankfulness for the way the Lord has met us in our fears and uncertainty...for the ways He has encouraged us with all of you.  I don't want to ever forget any of it.  

It's such a blessing to get to see her every single week.  Today the blessing was not lost on me.  Part of my devotional reading was from Psalm 136, where the writer is giving thanks to God for who He is and what He's done.  Each phrase is completed with "His love endures forever."  His love for this little girl, for this little family is enduring.  I was filled with great gratitude for His enduring love as I soaked in her (very) chubby cheeks and double chins, her already full head of hair and her chunky little legs.  God is so good for giving us this very special time with her.  

All went well in today's appointments.  The amniotic fluid is decreasing (which is normal for this time in pregnancy) to normal levels and my body is still healthy and doing what it should to carry her to term.  Her brain remains stable.  The doctor said it actually doesn't look like the fluid is putting a severe amount of pressure on the tissue and she's liking how the tissue is developing.  Her guess is that it's going to be a "good outcome" when she's born, although we really won't know until that happens.  For now though, we'll just be glad for the positive reports and hopeful outlook.  And no matter what, our hope remains in the ultimate Healer.  

Here are some ways to keep praying for us:

- Pray that baby girl and I both stay stable and healthy

- Please pray for my sleep at night.  Indigestion, restless legs and just general discomfort and insomnia are making it tough.  She's already estimated to be over 7 lbs (which is bigger than Colton when he was born), so this is a bit different for me.

- Pray that I am able to bring things at work to good places before she comes

- Please continue to pray for a miraculous healing of her brain

We are trusting that God is good and He has worked out all of the details of her coming into the world and what happens after that.  Please know that whatever our "good outcome" looks like, if you are praying with us, you are already part of a miracle.  Her life is already so special.  Thanks for supporting us and praying for us!

Tuesday, November 16, 2021

We have a date!

Today was a first.  We were able to see the fuzzy hair on her head in the ultrasound.  Just amazing.  

Not a lot to report today, although we had a full mid day of appointments.  Everything is still stable.  The doctor actually commented that it's nice to have these kinds of conversations with parents, because it's not always the case!  We are very thankful.  She's estimated to way about 5 lbs 13 oz and her growth is right on track.  Her head is of course still very large (99%), but the growth there is expected and stable.  The good news is that the ratio of fluid in her ventricles to overall head growth is pretty much the same and we continue to see more brain tissue in the scans.  We still really have NO idea what this means for her once she's born, but they are hopeful indicators.  In other good news, I had fewer and lighter contractions while hooked up to the monitor today (I still don't feel them.)

We met with a high risk OB in the practice today and scheduled my c-section - Dec. 21.  I was hoping it could be earlier, but baby girl and I are so healthy, they won't do it before 39 weeks.  If I'm honest, I wish it weren't so close to Christmas and so close to my due date (12/26).  I'm a little nervous about going into labor before then and having to have an emergency c-section.  Our doctor was great though, and walked us through everything that would happen if that were the case.  The NICU nurses would still be in the delivery room ready to assess and care for our girl, so we should be good!  In a neat coincidence (or God moment for us), the OB we met today, who will also do the c-section, is from Nigeria.  If you don't know a lot about Seth's and my story - Seth was born and spent his first 5 years in Nigeria and 20 years later, I visited the exact town (hospital even) where he was born!  

Life outside of the baby has been a little haywire recently (a Covid case in Colton's class - he's negative, thankfully - the week before his birthday and party, that totally changed all sorts of plans last weekend, this week and this weekend) and it's had me thinking about how tightly I hold on to my plans.  This c section scheduling just reinforced my conviction that God is showing me something here.  "In his heart a man plans his course, but the LORD determines his steps" Proverbs 16:10 But the plans of the LORD stand firm forever, the purposes of his heart through all generations. Psalm 33:11

While it's good to make plans, I really am learning to hold onto them loosely, because God is determining each step of the way.  It's definitely difficult for me to let go, but at the same time, so reassuring that the One who holds the whole Universe in His hands holds the specifics of our lives.

Please pray that I would be able to let go of any plans I think I have and just let God work.

Pray for miraculous decrease in the fluid in her ventricles and if not, continued stability and health.

Pray for my mood as I move into this last month of pregnancy.

Pray for continued stability and health in my own body.  

Thank you so much for all of the ways that you've been supporting us and praying for us.  We feel very lifted up and have so much peace (that in itself is really a miracle!)

Love you all! ♡



Monday, November 1, 2021

When it starts to pile up

 So I've moved to weekly appointments because of a slightly high amount of amniotic fluid they noted in my ultrasound 2 weeks ago.  It's concerning, because this could lead to preterm labor, which would just add to the challenges our girl has.  I had my first weekly monitoring last week and baby girl passed all of her tests just fine, but they noticed I was having pretty frequent contractions.  They aren't painful (which is good), but something to keep an eye on. 

This of course brings me back to that ugly state of worry.  Last week was pretty rough as I tried to stick to a really low glucose diet (to hopefully help with the amniotic fluid issue) and drink more water (for the contractions) and not worry that every tiny contraction could be turning into labor.  It was frustrating, because I've felt so much peace recently about God having her life in His hands.  It was so much easier when it was trusting Him with her and not having to trust Him to take care of me too.  Sometimes when things are clearly out of your control (baby having enlarged ventricles), it's easier to say "Ok God, this is Yours.  I surrender and trust You."  Then, when it's something you can exert a little more control over, you (I) drive yourself crazy trying to do everything perfectly so you don't mess up the plan.  In reality, I don't have control over when I go into labor. That's in God's control too.  I can follow all of the guidance to the best of my ability (limit simple carbs, try for 100 oz of water), but there's no peace until I give that to God.  I can't just trust Him with parts of this situation, I have to trust Him with the WHOLE thing.  I also have to continually trust Him with each detail that comes up.  There are times when it feels like it's all just piling up and the tiniest thing is the straw that breaks the camel's back.  The lesson I'm learning is that everyday, multiple times a day even, I have give each of those little pieces of straw to God, and give them back when I take them back.  

Seth got to join me for today's appointments, which helped me so much.  I'm still having frequent Braxton Hicks contractions (although I don't even feel the majority of them).   The doctor asked me how much water I was drinking.  Imagine my surprise when I proudly announced that I had been drinking 70 oz of water daily (which I had upped a lot from the prior week) and he told me that still wasn't enough.  Whew, I might float away.  If anyone has any suggestions how to drink 100 oz a day, I'm open! 

In other news, though, my amniotic fluid levels are back in the normal range (although the high end of normal).  I still have to stick with the lower glucose diet, but I'm getting used to that.  (Halloween was challenging, but I'll survive.)  She's still doing a great job growing, moving (ouch) and practicing her breathing.  The sonographer commented today on how strong she is (in relation to her kicks and punches), and I smiled to myself thinking about how strong she is in more ways than one.  Her left and right ventricles (the fluid in her brain) did slightly increase in size, but in line with her head growth, which is normal.  All of this is definitely reassuring.  

Thanks for continuing to walk this road with us! If you are praying for us, here are some specifics:

- Pray for the amniotic fluid to stay in normal range

- Pray that I will not go into labor in November.  Once we get to December, she will have a much easier (and less risky) time getting to where she needs to be.

- Pray that her brain continues to experience good growth (there is tissue growing)!

- Pray that her ventricles would even start decreasing in size and that she wouldn't even need surgical intervention when she's born.

- Pray that if she does need surgery, that she'll be a good candidate, there will be no complications and it will give her a great quality of life. 

- Pray for my sleep.  I have restless legs and pretty bad heartburn.  I'm also just getting to the stage where I'm generally a little more uncomfortable.  The anxiety doesn't help either.

Thank you again for your overwhelming support! 💗

Thursday, October 14, 2021

Holding Pattern

 We are still doing ok over here!  Last week was crazy busy with appointments and regular 3rd trimester pregnancy testing and this week has just been about catching back up.  

The good news is that there is no real news to come out of last week's appointments.  I'm doing fine (if fat and tired is considered fine :-)) and baby girl is still fighting.  The fluid in her lateral ventricles did increase slightly from my ultrasound two weeks prior, but not aggressively.  The doctor explained that there are 3 scenarios we can see in our appointments going forward - 1) the fluid stabilizes and just stops growing, 2) fluid growth stays on the same trajectory 3) fluid growth spikes (which is when there's an issue).  We're happy that we seem to be in scenario 2 and are praying to stay there or scenario 1 (or the fluid decreasing, which we know God can do!)  Everything else is still looking great.  She passed her punching and kicking tests with flying colors (which did not surprise me in the least) and we saw her taking practice breathes, which is also a great sign.  She even gave us a smile, which may have made my eyes a little leaky!

Her smile made me realize how thankful I am for this time with her right now.  When we first got the news of the fluid on her brain, every kick, punch and squirm was a reminder that she wasn't ok.  Every time Colton hugged my belly or talked to her, it took everything I had not to burst into tears.  But now, it fills me with so much joy that this little girl is a living part of our family already!  I'm so glad Colton can feel her kicks and interact with her and will always have these precious memories.

We are still filled with hope that although life may have some more challenges for her (or maybe not!), she is going to live a meaningful life.

My next appointment is this coming Monday.  Please continue to pray with us for full physical healing of her brain.  Pray that the fluid growth would not spike.  Pray that God would continue to fill us with His hope and peace.

Thanks again for being a part of this journey with us!

Monday, September 27, 2021

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.