Baby Girl Gets A Name

I know that there are now many of you out there reading this blog who don’t really know us very well, or at all, but are still faithfully praying for us and for Baby Girl.  It is truly humbling for us to see the number of hits on this blog each day and to know that they represent prayers and love from far and wide.  For those of you who do know us and were at our wedding a couple of years ago, you may remember the beautiful sermon preached by my brother.  It was all about names and how significant they are.

I’ve thought about that a lot in the last few months.  Robert and I actually had a name picked out for a girl even before we knew that Baby Hardy was a girl, but after learning more about her condition and all that we will face ahead of us, I wondered if it was still the “right” name for her.  We spent a lot of time looking at name meanings and trying to decide how to capture in a name all that she is, all that we hope for her to be, and all that she means to us already. 

As a teacher, it’s even harder to settle on a name.  I’ve taught a lot of children (some I loved, some not so much) and it seems that for any name of a former student there were strong associations that I just couldn’t shake.  Plus, I found myself creating additional rules that may or may not have been ridiculous: cannot be shortened to a nickname (been there, done that, makes life hard), must be called by her first name (Thanks, Mom and Dad for breaking that one too…), cannot have more than 6 letters, must be easy to pronounce and spell, etc. etc. etc.  We thought about Irish names since that’s where this child was conceived.  We also wanted to consider family names and history.  We didn’t want a name that was too trendy or popular, but also didn’t want a name that no one would be able to recognize.  Robert and I are both drawn to more traditional, old fashioned names too.  Whew.  This is a big task – naming your child.

We did not originally plan to announce the baby’s name until after birth.  Since we were finding out the gender in advance, we thought it would be fun to still have some surprises up our sleeve to announce at the time of birth.  But now we know that we’ll have enough surprises then without the mystery of her name added in.  And even though we both believe that God hears your prayers for her just fine without you speaking her name, we did think it would be powerful for you to be able to begin now praying for her by name.  We hope that knowing her name now will give you another sense of connection to her so that you will remain faithful in your prayers for her future. 

Okay, enough stalling. Baby Girl Hardy’s name is:

Clara  Mae  Hardy

Clara means bright and clear.  Mae is a derivative of Mary which has been a long time family name on my side of the family.  Mae is also a family name on Robert’s side.  It can mean beloved, wished for child, and of course is also associated with the month of the year – May (the month of Maia, the Greek mythological goddess of spring growth).  We are hopeful that next May might be a time of great growth for Clara (especially those lungs!) and that it will be a bright time in the life of our family.    We will call her Clara (although I expect that living in the South, that double name may get added on quite a bit too…).  Of course, we are already aware of how appropriate her last name will be for her.  I hope she is a hardy girl! 

Mostly, I just think it’s a beautiful name.  I love the way it sounds when we say it and can’t wait to whisper it into her ear. 

“A good name is more desirable than great riches”  Proverbs 22:1 

I hope that we have chosen a good name for you, Clara. 

The New Normal

I won't be able to write every day of the next four months, but will try to update at least weekly to let you know what we're thinking and feeling and remind you of the things we're diligently praying for in hopes that you will join us on your knees in persistent petition. 

This was our first true week back to living our normal lives.  I went back to school for the first time last Friday and so this is my first five day week after nearly two weeks out for tests and appointments and meetings and processing.  It's been good, so good, in very many ways to return to school.  I work with a wonderfully supportive group of educators who have cared well for me during a difficult time.  I love my work - even on days when I don't have enough energy to do it the way I would like to - teaching fills me up like nothing else can.  And as my mother keeps reminding me, I'm sure grateful for the health benefits I've got right now that are going to pay for all those tests from the past couple of weeks! 

I was terribly worried about what to tell my children, or how.  I was afraid of scaring them or making them worried.  I should have known that I needed not worry:

Mrs. Hardy: Boys and girls, I've missed you very much while I was gone and I'm glad to be back at school.  I have been at lots of doctors' appointments because they wanted to take a closer look at the baby and make sure she's doing okay.  Turns out she's going to have to have surgery after she's born.
Student 1: When I was five years old, I had surgery on my neck because my Great Dane bit me.
Student 2: One time I got stitches right here because I fell off my bike.
Student 3: Can I get some water?

Yeah, they're fine. 

I'm not.  Well, not totally.  It's strange to re-enter a world that's still moving at the same pace and in the same direction and going after the same things when you've had something happen in your own life that has so drastically altered your reality.  Things that once seemed very important have no meaning to me at all right now.  And things that used to have no meaning at all to me suddenly seem terribly important.

For example, when something at school got "sprung" on us teachers like so often seems to happen, the rest of the teachers on my team were furious.  Indignant.  Self-righteous.  WHAT ARE THEY THINKING?!  But me?  It just didn't seem to matter.  So what if we have one more little project we have to find time to squeeze in.  That's not a big deal.  We'll do it.

Or last night, we had a PTO meeting (Picture 150 kids in construction paper costumes on the gym floor singing African songs and doing African dances.  Yep, that kind of PTO program.).   I looked out into the audience full of parents watching their kids perform and immediately spotted nearly a dozen small babies.  Some of them didn't seem to be even a month old.  And I was overcome with sadness that these babies were at a PTO meeting with their families at one month, moving on with life, joining the rest of the world.  When our baby is one month old, we'll likely still be in the NICU, catching naps when we can and eating hospital food because it's the closest thing and doesn't require that I leave her side for very long.  Those other families haven't done anything wrong and I'm not angry at them for their ability to be out in the world and moving on.  It just makes me a little sad.

So, right now seems to be about finding the "new normal."  How do I get back into the swing of my life and continue doing all the little things that each day brings and not be overwhelmed with emotion at the sound of a Brenner Children's Hospital ad on the radio or baffled by how much "everyone else" is frustrated with things around them that don't seem very important to me right now?  How do I reconcile "real normal" with my "new normal"? 

I don't know the answer, but I'm grateful for the time and space to figure it out because I think that's probably part of the puzzle.  I'm grateful for friends and family who will let me confess to them that babies at PTO meeting made me sad or that I can't care about someone else's "CRISIS" the way that I would like to because to me it just seems trivial.  I'm thankful for God's grace that covers all of my imperfections along with Baby Girl's diaphragmatic hernia.  I rest in the knowledge that we serve a God who knows my old normal and knows my new normal and will carry me between them in whatever shape I'm in. 

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Things we're praying for:

1) That God will heal Baby Girl and make her whole.  We recognize that He has the power to do this in a time and way that is miraculous and surprising to everyone or that He may heal her through many months in the NICU with doctors and nurses working hard to help her hang on.  We'd prefer the former, but we'll take the latter.  We're just praying that she be made whole and be able to come home to join our family here.

2) That her pulmonary hypertension will respond to the medications that are offered her.  We're praying right now that she never has to go on ECMO and that her stay in the hospital will be as brief as possible.

3) That we will have the strength and courage to face whatever is ahead of us and that we will remain faithful in believing that God wants her to live and flourish here with us.  

There's more.... we pray a lot of prayers these days.  But those are a few things that we're really praying hard for right now and we ask that you will join us.  God hears the prayers of many. 

Communion

As a deacon in our church, one of the things I signed up to do was take communion and serve it to members who are home-bound and cannot join us for worship at Knollwood any more.  I was supposed to go visit Dewey and Virginia Hobbs several weeks ago for World Communion Sunday, but had not found a good time to do it, and then all this happened.  My mom and I finally went to go see them today.  We shared the story of our last two weeks with these dear, dear people and they listened with compassion and understanding that comes from having lived 85 years and seen and experienced their own share of heartache and pain.  Dewey is an ordained minister himself and has faithfully served many many people in his years of ministry and service.  It seemed backwards for me to the be one serving him communion.  So, when it came time for us to take The Lord's Supper, he's the one who blessed the broken body of Christ and the blood shed for us before the four of us shared in an intimate communion together.   They're both wise enough to not have had any platitudes or empty promises to give us.  Instead, before we left Dewey simply prayed this prayer, "May God hold you in the hollow of His hand." 

What a beautiful image, not just for us but for all of God's children.   And Baby Girl Hardy.

Adjusted Expectations

Today we geared up for another round of doctor's visits.  While we will continue to have more frequent visits with doctors in the coming months, this should be the last of this initial flurry of meetings, consultations and tests.  Today we saw the pediatric cardiologist.  As I have mentioned, the real issue with the diaphragmatic hernia is a lung/breathing/pulmonary hypertension issue.  Since the heart is an important piece of all that, they wanted to check and see if the heart looks okay and is functioning correctly at this time (apparently with CDH there are often heart issues and complications as well since it gets shifted and smooshed in the process).  The pediatric cardiologist will be another part of the team (along with neonatalogists and pediatric surgeons) who are caring for Baby Girl once she joins us.  

The good news is - we got good news today!  They did a full fetal echocardiogram and it looks like everything about the heart at this time has formed correctly and is functioning well!  We thank you for your specific prayers about this issue; it was truly a great relief to get good news at a doctor's visit.  The stronger Baby Girl's heart is, the better it will be able to pump oxygenated blood through the body and to and from the lungs.  (I'm sure that was not completely anatomically correct, but cut me some slack.  I'm just an elementary school teacher).  We'll go back in eight weeks for another look, but for now, everything about her heart looks healthy and strong!

We had another realization today about how our expectations for doctor's visits have changed in the last two weeks.  In our young lives and pretty healthy experiences thus far, we've always gone to the doctor with an expectation that everything will be totally fine (except maybe a sore arm from a tetanus shot.).  We started this pregnancy that way too.  Doctor's visits were something to look forward to - a chance to hear the baby's heartbeat, maybe even see an ultrasound, and be told that everything is going just fine.   Don't forget to take your vitamins.  Our experiences of the last few weeks have probably changed how we enter exam rooms forever.  Today we were a little anxious, slightly concerned, hopeful, but reserved.  We've started preparing ourselves for bad news instead of expecting good news.  While this is probably not ideal, it sure made getting good news so so sweet. 

The doctor (another very kind and intelligent man; we've been so blessed with doctors!) began by telling us all the things that sometimes go wrong with the heart in cases of CDH.  Robert and I were holding our breaths for minutes before he finally uttered the words, "I don't see any of that going on with your baby."  Whew.  What a relief.

A lot of the processing for us the last week has been about adjusting expectations in general.  We're not going to have a picture-perfect baby.  We won't be going home with her days after delivery.  Another doctor told us today that we're likely have difficulty getting to transfer to breast feeding and that we may not be able to do that.  We're grateful that even though this medical knowledge about our baby has changed the second half of our pregnancy, we do have this time to adjust our expectations, change the images in our heads (some we didn't even know were there!) and begin to prepare for what our reality will be.  When she comes, we won't feel any disappointment and hopefully not any anger.  We'll know that it's a long and hard road ahead, but at least that's what we'll be expecting. 

The Surgeon's Report

Yesterday we met with Dr. John Petty, one of the three pediatric surgeons at Brenner Children's Hopsital (Baptist Hopital) where Baby Girl Hardy will be transferred after delivery and stabilization.  First of all, let me say how wonderful all the doctors that we have worked with are.  We have been truly impressed by not only the professionalism and knowledge of these doctors, but their overwhelming care and concern for us as people and as parents.  We are so very very grateful that we live where we do and that we are receiving and will continue to receive such a high standard of care.  Dr. Petty, much like Dr. O'Shea on Friday, spent over an hour talking with us about Baby Girl's condition and explaining to us the things that we can expect after she's born.  Much of what he said we had heard before, but it was great to hear it confirmed by another doctor.  We feel like we are being so well prepared for the struggles and trials that we will all face together as a family once she joins us.  Here are some bullet points from our conversation with him.  We share these specifics so that you can better understand where we are, but also so that you will know ways to pray specifically for Baby Girl's health in the months ahead. 

• The ability to predict now (at 20 weeks of pregnancy) how Baby Girl will do once she's born is very poor.  There are some studies with indicators and ratios and markers, but the bottom line is until she starts trying to breathe air and we can see how she does with that, we will not know exactly where we fall on the very wide spectrum of CDH (Congenital Diaphragmatic Hernia).
• The problem with her condition is not so much the mechanical, physical issue of the diaphragm hole and the misplaced organs (although that will certainly have to be addressed).  The problem is pulmonary hypertension (blood pressure in lungs).  We are praying that her pulmonary hypertension after birth is not severe and that she will be able to receive the treatments that are available to her and respond favorably to them.
• Doctors' thinking about CDH has changed in the last 15 years.  It is now not so much about fixing the hole immediately as it is about stabilizing the baby, seeing how she responds to treatments for pulmonary hypertension and then repairing the hernia.
• A "last resort" treatments for infants with pulmonary hypertension is ECMO (extracorporeal membrane oxygenation).   Brenner's is one of the few places in the state that does ECMO so they see a lot (relatively) of CDH cases, approximately ten a year.  His rough estimate of the CDH cases at Brenner's is that about 3-4 of those 10 go on ECMO and about half of those babies will survive.  Therefore, Brenner's overall survival rate for CDH is around 70-80% (these are rough estimates, not necessarily statistically accurate numbers.)  The national survival rate for CDH is between 50-65%.
• The range of stay in the NICU (or PICU if ECMO is required) is anywhere from one month to seven or eight months.  
• The surgery is done one of two ways.  If there is enough diaphragmatic muscle, they will try to close the hole by stitching muscle to muscle.  If not, they will "patch" the hole which may require additional surgery down the road as the baby (and her diaphragm) grows.  The incision is below her ribs.  They hope to be able to do the surgery within a week after she is born, although that may be a little longer if she ends up having to go on ECMO.
• We looked at the MRI films again.  The surgeon said that her right lung looked "normal".  While the radiologist noted that there was no left lung present, Dr. Petty also said that he thought there probably was a little bit on the left side as well.  While this is certainly good news (and we will continue to pray that she is able to develop as much healthy lung tissue as possible), he also said that the size of the lung was not necessarily an indicator of how successful the baby would be.  The greatest indicator is the pulmonary hypertension (which we won't know the details of until she is born and begins breathing air.)

This is a lot of information for us to process and consider as we look ahead to Baby Girl's birth and preparing for her to have the best chance possible at life.  We were especially grateful for some of Dr. Petty's closing remarks.  He encouraged us to enjoy the rest of the pregnancy, to be grateful for the gift of a child that we have been given, and to celebrate her coming into the world.  "Paint the nursery, and have fun getting ready for her," he said.  He echoed the many other doctors who have assured us that we have done nothing wrong to cause this condition and that as long as she is in my womb she remains safe and healthy, breathing through the placenta.  We are looking at the months ahead as a chance to adjust our expectations of her first few weeks and months of life and to grow more and more excited about her joining us and being a part of our family.  We know that we have changed our perspective on becoming parents and on what really matters in the last couple of weeks.  As hard as it is to receive difficult news like we have received, we are grateful for the opportunity to prepare and pray for her healthy growth.  The generation before us would never have even known that this was ahead of them.  We'll have the best doctors on standby and ready to respond and hundreds of you out there, praying for her success as well.   That's a pretty good report.   

Grandparents

As we have grappled with sadness and confusion this week we have also found many, many blessings and small miracles in this difficult time.  I know that it is God's grace that allows us to find any positive things during dark times.  As I've mentioned before one of the greatest of these has been the love, support and prayers poured out on us by both friends and strangers.  Another is our parents.

This was a time when we felt especially blessed to live near my parents.  When we left our appointment on Tuesday with the worst news of the week we drove straight to their house and fell into their arms.  Throughout the week, as we learned more information or had last minute appointments scheduled they dropped anything they were doing at the last minute to join us, listen to us, and stand by our side.  My mom brought us dinner (which I ate three or four bites of before promptly throwing up), but her presence and intentions nourished us more than the food itself.  They were every bit as heartbroken as we were - or more - but stayed strong for us throughout the week.

Robert's parents live in Georgia, but after work on Friday they drove four hours to see us, hug us, and be near us.  His mom cooked for us all day on Saturday and filled our freezer with meals for the weeks to come.  They were only here 24 hours, but in that time they were able to comfort us and restore us like only parents can.  I am so very thankful for my in-laws.

We are beginning to understand what parents' love for their child is like.  As much as we already love Baby Girl Hardy and yearn for only good things for her, our parents somehow love us even more.  They've had nearly thirty years to practice it.  We are so fortunate to have good examples of marriage and of parenting in our parents and are grateful for the close, positive and healthy adult relationships we cherish with them now.  Just as this week has brought Robert and me closer together it has also strengthened our bonds with our parents.  This is one of those small little blessings.

Baby Girl Hardy is going to be so lucky to have these four grandparents doting on her and loving her like only grandparents can.  And we are daily counting them among our many blessings.

 

Big Daddy, Mama K, Sweet Mama, and Daddy Bob

The Crib

We ordered the crib for Baby Hardy's room before our first 18 week ultrasound on October 28. It arrived on Monday before our 2nd ultrasound when we first received the scary news about Baby Hardy's future. It sat in the box all week while we just stared at it, unsure of its future or our baby's.


Today we opened the box and put the crib together.


It was a more significant experience and ritual than putting a crib together should have been, but to us it represents so much.


It is a tangible sign of the hope that we have for Baby Girl coming home and sleeping here. It represents our belief that she will be here, alive and healthy and able to make this her home. It is a reminder to us to pray for her each day between now and then and trust in God's ability to create her wholly and provide for her needs as well as ours. It is a bold statement that we intend for her to join us here on earth.


With each screw that Robert added or piece that was put together it felt to me almost like we were putting her together, physically creating a space that will be just for her.


Baby Girl, we're getting ready for you.


This is the fabric and these are the colors that will brighten your room the way that you will brighten our lives.


We're not done getting this nursery ready, we're not done preparing our hearts for you, we're not done praying for you. But we're beginning all these things and we'll continue until you have safely made your home right here.


We love you.