Frequently Asked Questions

With the big day just around the corner, and our anticipation rising, we are so grateful for the many of you who are following our blog, sharing our story, and praying for us.  We know that many of you have lots of questions; some of which you may even be afraid to ask.  So, I've compiled a FAQ that might help you out.  Please feel free to share our blog, and our story with any other friends, church members, colleagues.  We're thankful for all the prayers we can get. 

Q. I’ve just stumbled on this blog recently I’m not really sure what’s going on.  What’s Clara have exactly?

A.  Clara was diagnosed at about 18 week gestation with Congenital Diaphragmatic Hernia (CDH).  If you want to read our story (without reading this entire blog) this post is a good summary.  You can also learn more about CDH by visiting this website.

Q. Are you having a C-Section?

A. Right now, we have a scheduled induction, so we hope it will be a vaginal delivery.  We do know that she’s big (and seems to have a particularly large head, thanks to her father), so it’s always a possibility we’ll have to do a C-section.  If that’s the case, I’m okay with it.  A vaginal delivery is supposed to be better for her and for me, but we’ll do whatever she needs when the time comes.  (Yes, I’m signing up for the epidural.  No pride here.)

Q.  Will you get to see Clara when she’s born?

A. Yes!  Probably just briefly for a moment before the NICU team begins working on her in Labor and Delivery.  Then, they’ll take her downstairs to the NICU to do more tests, get a line in, and whatever else might need to be done.  If she’s stable and doing well, we’ll be able to stop by the NICU again and see her before I’m moved to the recovery room.  We won’t be able to hold her, but we should at least be able to touch her little fingers and toes and tell her over and over and over again how much we love her and how glad we are to meet her. 

Q.  When will Clara be transferred to Baptist Hospital (Brenner Children’s Hospital)?

A.  Probably within the first couple of hours of her life.   If there are problems or issues, they’ll transfer her quickly.  If she’s relatively stable, they’ll give her a couple of hours to catch her breath (so to speak) and then transfer her to Baptist to be evaluated by the surgical team.  There’s a special little transport vehicle just for NICU babies.  It’s basically a NICU on wheels and she’ll be in excellent care!  It’s only a 7 minute drive between the two hospitals.

Q.  Wait!  You’ll be at Forsyth Hospital and Clara will be at Baptist Hospital?

A.  Yes.  But not for too long.  It sounds crazy, but it really is the best situation.  Forsyth is best equipped for labor, delivery and post-partum care.  Baptist is best equipped for dealing with very sick babies.  We want me to be with the best doctors for me and Clara to be with the best doctors for Clara.  If labor is relatively easy (Ha!  Is it ever?!) and I’m doing okay, my doctor will discharge me early, after about 24 hours.  If I have a C-section or other complications and need to stay longer, she will give me some passes to leave Forsyth and go over to Baptist for some stretches of time and then return.  I know it might sound crazy, but we’ve thought through it and talked about it and it really will work just fine.  Everyone is going to have the best medical care possible! 

Q.  When will Clara have surgery?

A. Ahhh… that’s the million dollar question.  We’d really love to know the answer, but we don’t!  It all depends on what happens once she’s here and tries to breathe air for the first time.  It could be as early as a couple of days after she’s born or it could be several weeks.  We’re praying for the former and a speedy recovery to follow, but the surgeons will know what’s best for her and we will trust them.  Stay tuned to the blog for updates about a surgery date as we find out ourselves.

Q. Are you going to nurse?

A.  I won’t be able to nurse at first because Clara will likely be intubated/ventilated and have a feeding tube.  I am hoping to pump and give her my breast milk that way.  Down the road, we may even be able to transition from bottle back to breast.  But that’s a long journey and babies with CDH often have feeding issues.  We’ll cross the bridge when we get to it, but we’d love to be able to nurse and will at least hope to give her pumped breast milk as much and as long as possible.  It’s another great thing for you to pray for.  

Q.  Can we visit?

A.  Maybe.  Nobody will be able to visit Clara while she’s at Forsyth Hospital (not even grandparents!).  Their NICU is still on Flu Alert and only the parents are allowed in.  Once she’s transferred to Baptist, we can have up to 2 visitors in the NICU (including one of us), so there is a possibility.  But we will also be happy to have visitors come spend time with us in the waiting room.  You should definitely call or check with someone in the family before showing up though. 

Q.  How long will Clara be in the hospital?

A.  That’s another unknown.  The shortest stays for CDH babies are usually in the 3-4 week range.  That’s certainly what we’re hoping and praying for!  Some babies are there as long as 7-8 months…. That’s not usually a great sign.  My thirtieth birthday is April 30… I’ve been saying the best birthday present in the world would be to have my baby home.  We’ll just have to see.

Q.  What will you need?

A.  Your prayers, your love, your patience.  Beyond that, we don’t really know exactly what we’ll need right now either.  Maybe some meals, but we’re not sure when.  Probably some people to drag us away from the NICU from time to time and help us re-focus on life and God and friends outside of the hospital.  We’re not sure what else we’ll need, so again – please be patient with us and let us figure out what this is going to look like before you all start showing up with the chicken pies.  We’ll take it a few steps at a time.

Q. Are you scared?

A.  Yes.  Find me a first time mother who’s not a little anxious about squeezing out a watermelon.  I’m a little nervous about labor and delivery, but encouraged by some early progress and very very very grateful to have the best doctor in the world.  I’m really not terrified or panicked.  I’ve always said I had birthing hips.  I can do this!  I’m scared for Clara, too.  It will be hard to watch her struggle, sad to see her hooked up to wires and machines, difficult to not be able to hold her or fix her.  So, of course I’m scared.  But I also have a great peace about this (most of the time!).  There are so many blessings surrounding us… we really can’t even believe how fortunate we are in so many significant and meaningful ways.  I’m excited about becoming a mother!  I’m eager and ready to meet my child!  I’m a big hormonal emotional fruit basket.  So scared is part of it, but there’s a lot of other great stuff going on, too. 

Q.  Is it hard for you to talk about this?  Should we not ask questions?

A.  Really?  Me?  Hard to talk?  About anything?  Nah….  Now, I might randomly break down on you and start crying.  But for the most part, I’m more than happy to tell you what I’m thinking and feeling and answer any questions you have.  Hopefully if nothing else, this blog has shown you I’m a pretty open book.  So don’t feel like you have to tiptoe around us.  We’re okay.  Really. 

Q. How can we find out what’s going on?

A.  We’re so thankful for so many people who are loving us and concerned about us!  We probably can’t answer every single phone call/email/text/Facebook message.  But know that each and every one means a lot to us.  The best way for you to find out what’s happening is to check the blog.  Both hospitals have WiFi and it is our intention to update, when we can.  We’ll post photos and let you know how Clara is doing whenever the chaos and craziness calms down enough for us to do so.  We’ve got a call list of folks we’re going to try to reach by phone after she’s born before we broadcast to the whole world wide web.  I’m still new at this whole public persona thing.  But the blog is your best bet for staying in touch.  All those other methods work too, but be patient with potentially slow/absent responses. 

Q.  What should we pray for, specifically?

A. Pray that Clara will be a fighter.  Pray that she will respond well to the medications, treatments and surgeries that she will face and that her condition will be able to be corrected with minimal side effects or lasting problems. Pray that her lung is big and strong and that she is able to use it well to support her life.  Pray that we will have a relatively short stay in the NICU and be able to bring her home to begin our lives together here as soon as possible. Pray that she will not experience pain or suffering and that she will be courageous. Pray that she will know how much she is loved.

Pray also for the medical staff at Forsyth and Baptist Hospitals who will care for Clara after her birth. There will be many neonatologists, pediatric surgeons and NICU nurses who touch her and care for her. We are thankful for the medical community that we will become a part of and pray that God will give these people wisdom, grace, skill and compassion as they care for Clara and for us.

We ask for prayers for our family as well. We know we have some challenging times ahead of us and we are asking that God will give us the strength and courage to face whatever we have to face. We pray that we will continually seek Him during this difficult time and give Him the glory for all the miracles we experience. We pray that the lives of many people will be touched by Clara’s story and that we will be good examples of Jesus’ love throughout this.

What other questions do you have?  We're happy to answer them.  Don't be afraid to ask!

Final Photo Shoot

Well, final in utero photo shoot.  The next photos that we have of sweet Clara she'll be on the outside.  Our last ultrasound today was fine.  She's still practicing breathing lots and lots and it makes our hearts so happy to watch her chest rise and fall.  We continue to pray that her practice in the womb is preparing her and making her strong to breathe air and process oxygen once she's here.  Robert commented today when looking at the ultrasound screen how much smaller her stomach looks in the chest cavity now, compared to the rest of her body, than it did at the beginning when we were first diagnosed.  I hope that means her lung(s) has had some space to grow and will surprise us with its strength.  The weight estimate (which can be +/-almost a pound) was EIGHT POUNDS, TWO OUNCES.  We've got us a big girl coming!  As is evidenced by these cheeks:

Where, oh where did these giant cheeks come from?

PEEK-A-BOO!

Sleepy eye rubs

Baby foot

 

That's our girl! Just six more days now.  Thank you all for your fervent and persistent prayers.  We love feeling your comfort and encouragement and experience great peace from knowing how many people are surrounding us and Clara in your prayers.  God is truly being bombarded.  Keep it up!

 

Doctor's Report: Staying Put

We had a good appointment this afternoon and I think Dr. Scherer effectively talked me down from my cliff of paranoid anxiety about Clara arriving too early (for now!).  I’m still progressing towards labor.  For those out there who like the nitty gritty details, I was 3cm dilated and 70% effaced and Clara has definitely dropped.  But the doctor wasn’t panicked at all that it was too much progress to still be a week away.  In fact, she was encouraged that these signs just mean that I’ll respond favorably to induction.  So, we have now officially scheduled the induction for next Wednesday.  Robert and I will check in to the hospital at 5:30AM and once we get settled in to a room will start the Pitocin.  We’re hoping Clara will decide to arrive sometime late afternoon/evening on Wednesday.  We also hooked up to the monitor today for about 15 minutes, just to make sure everything was looking and sounding all right and Dr. Scherer said she looked “perfect.”  I was apparently having contractions about every two minutes while hooked up to the monitor, but they weren’t very strong at all – some of them I couldn’t even feel and the others were definitely not painful.  Dr. Scherer assures me that if I go into labor, I’ll know it and the contractions will be a lot stronger.  Robert got to hear her hiccups while I felt them and counted other movements.  We both listened to that sweet little heartbeat ticking away.  So, everything is looking good and on track for our best laid plans.  Fortunately, Dr. Scherer is around between now and Wednesday anyways, so if something does start to kick into gear early, she can still check in on us.  Thanks for your prayers that Clara continue to stay put and grow in her cozy safe home for one more week.  Tomorrow we have our last ultrasound and hopefully will get some final in utero photos plus a last weight check.  Hey, guess what?   One week from today I’m going to be a mama.  How cool is that?

Crossing Fingers, Crossing Legs...

I think that most women get to Week 38 of pregnancy and are so ready to be done with it all that they start trying the laundry list of ways to get the baby out: taking walks, eating spicy food, foot massages, drinking vinegar, going bowling, herbal teas, cleaning the house, acupressure, castor oil, eating pineapple, and whatever else the wives’ tales suggest.   Although I am eager and ready to Clara to be here, I’m now in the twilight zone of wanting her to stay precisely where she is for eight more days.  My doctor, whom I love and who has cared for us so well during this pregnancy, is on call right now until noon tomorrow and then not again until our scheduled induction next Wednesday.  So, I would really like for Clara to promise to stay put until then.  Not only are we wanting to avoid me going into labor on my own, for the sake of scheduling and having all the right doctors on standby and ready and all that jazz, but I’d really really really like Kerri Scherer to be the one to deliver this baby.  Not to mention I have three more days of school this week that I would also like to finish with my kids before handing them off to the maternity sub.  I have an appointment tomorrow to check on progress and have recently been haunted by dreams where I’m 5cm dilated and rushed to the hospital to deliver immediately following.  Please don’t come true!  I’m torn between being encouraged by signs of some progress towards labor (Clara seems to have dropped some, my feet and hands are swelling up a bit lot, and I know that two weeks ago I was already 1cm/50% effaced, so at least there’s hope that my body recognizes we’re getting closer to the time… so sorry if that was too much information for you!) that may mean that the induction is successful and labor won’t last for too long and also not wanting things to progress too much before next Wednesday when we can control everything.  So, focus your prayers on Clara and her health once she gets here, but if you happen to think of it, you might just say a little prayer that she stays happily in the womb until next Wednesday.  I’m avoiding everything in the aforementioned list.  And in the meantime, I’ll cross my fingers and cross my legs too….

Intercessory Prayer

Some of the wonderful folks in our Sunday School class at church have organized a time of intercessory prayer for us and for Clara around the time of her birth.  For 24 hours, beginning at midnight on March 23, there are 30 minute slots for folks to sign up to commit to praying for Clara.  This is just another of the many ways we have been humbled and overwhelmed by the expressions of love others have shown us.  With March 23 just ten days away (!!!!), I wanted to be sure to share the link here, so those of you who may not have been aware, but would like to sign up for a time, can do so.

If this is something that you feel called to participate in, please visit the sign up here.
If the link doesn't work, copy and paste this address: http://doodle.com/4h44gps9vwxtb89k

Again, we cannot say enough how much we have been encouraged and sustained by the prayers and love you have all covered us in the past few months.  With Clara's birthday rapidly approaching we ask you now, more than ever, to continue praying for her.  We remain hopeful and optimistic that she will have a speedy recovery and come home with us soon.  We believe that your prayers truly matter. 

More to come....

Music

I'm really not one to listen to contemporary Christian music (although I'll admit I did go through a pretty serious stage of it in high school....).  If I want worship music, I'm really more of a hymn girl and otherwise I listen to country or NPR or whatever my music-snob husband has playing.  But the past few months, I've been finding myself wanting to listen to worship or praise music while I'm driving around and since my iPod is never charged and they don't make radio stations that play Blessed Assurance and Come Thou Fount of Every Blessing, I've found myself tuning in to KLove some.  There are two songs in particular that I've heard in the past little bit that have spoken to me during this time, so I thought I'd share the lyrics. 

Amy Grant's Better Than a Hallelujah

God loves a lullaby
In a mother's tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkard's cry,
The soldier's plea not to let him die
Better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Are better than a Hallelujah sometimes.

Better than a church bell ringing,
Better than a choir singing out, singing out.

And... Natalie Grant's Held
  
Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
Were asking why this happens to us
Who have died to live, it’s unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held

I think they speak for themselves, or maybe they don't really speak to you at all right now.  But as a soon-to-be mother that is likely to be crying through lullabies in the dead of the night soon, or who sometimes feels that the sacred is torn from my life, it's nice to hear that God hears my cries, maybe even sweeter than a Hallelujah, and that He'll hold me. 

The Baby Daddy

I promise to always be faithful to you, honest with you, and understanding and accepting of you.  I will strive to comfort you and support you through life's sorrows and joys, in good times and in bad, in plenty and in want, through illness and in health.  I will forgive you as we have been forgiven.  I will love you unconditionally, respect you, trust you, laugh with you and cry with you, learn with you and grow with you as together we build a home centered on Christ's love and compassion.  I promise to always love, honor, and cherish you for as long as we both live.

On June 14, 2008, Robert and I stood before friends and family and read these vows we had written together.  We would never have expected that less than three years later we’d be where we are now or just how much these vows would mean in light of what’s ahead of us.  Most of this blog has been my ramblings, my worries and fears, my hopes and dreams and my updates.  But there’s a remarkable unsung hero behind it all and he deserves a little recognition.

Robert has loved me so well through this pregnancy.  I can’t even begin to imagine becoming a mother without him as the father.  When we first found about Clara’s diaphragmatic hernia we were both devastated.  It was the kind of news that could have driven a couple apart with fear and sadness and grief.  But instead, we clung to each other with a tenaciousness and desperation that has just made me so terribly grateful for this man I married.  When I feel overwhelmed or panicked or sad, he is the one who is strong for me.  He allows me to cry, he holds me when I’m broken, he reassures me of our hope and faith without ever belittling or discounting what I might be feeling.  He is a rock.  His calm and peaceful spirit has sustained me and comforted me through the darkest of times.  He is so patient and forgiving and understanding of me.  (An email I got from him last week said, “Is there a reason that there’s a full jar of jelly in the sink?”  Yes.  It’s pregnancy brain.  Thank you for putting it away.) 

He has cooked meals so I could sleep on the couch and cleaned them up when I still couldn’t manage to get up.  He has made runs to the drug store to buy medicine for me without complaint of the time of night.  He has rubbed hydrocortisone cream all over my rash-covered body and covered me with ice packs to soothe the itching when I couldn’t sleep.  He has listened to more vomiting than any one man should ever have to endure and brought me crackers and Sprite at all hours of the night.  He has gone to sleep in the guest room so that I could have the whole bed to myself and my pillow fort.  He has painted Clara’s room and assembled her furniture and endured hours in Babies R Us while I contemplated which carseat, stroller, highchair or pack n play would be best.  He has offered his frustration and annoyance that parking lots rarely have “expectant mother parking” (even though I’ve told him I can still walk; I’m pregnant, not handicapped!).  He has fussed at me for licking the bowl of raw brownie batter for fear that I’d give Clara salmonella poisoning.   He has refilled my ice water ten thousand times.  He has arranged his work schedule to be with me at doctor’s appointments, even when it hasn’t been necessary, but just because I seem to constantly carry fear of “bad news.”  He has installed a new faucet in Clara’s bathtub so it will be easier to give her baths once she’s home.  He has held me while I cry.  He has rubbed my back when I cannot sleep.  He has prayed for me and with me and over me.  He continues to tell me I’m beautiful even when I know for a fact I’m not.  He has extended grace to me countless times for things I have forgotten, broken, burned, or ruined.  He has made me laugh when I just need to be distracted.  He has let me watch USA shows when he really prefers FX.  He has carried girly tote bags in public when he deemed them too heavy for me.  He has checked the temperature of my bath because he worries that I take them too hot for baby.  He has taken me out on dates.  He always drives, even after he’s sometimes spent 6+ hours driving that day for his job, just because he knows I don’t like to.  He’s stayed up late to finish chores around the house I didn’t get to.  He’s woken up early just because he knows I don’t like leaving for work while he’s still sleeping.  He went to birthing classes with me and watch horrific videos and still promises to stand by my side through labor and delivery.  He has worked so hard to earn as much money as possible so we can save for Clara’s medical expenses.  He has even quit drinking much beer, for the sake of the budget.  He has run up and down the stairs to get things for me so I don’t have to.  He has skipped out on opportunities to go kayaking or climbing to spend time with me instead.  And a million other things.  He has loved me well.  He has lived in to those vows in a way I would never have dreamed would be necessary or possible.  Clara doesn’t know how lucky she is to have him for a daddy.  Because as much as he loves me, I’m sure he’ll love her even more.  Just imagine what he’ll do for her….

Baby Daddy, ready to hold Clara in his arms....