March 31, 2011

To God Be The Glory

What a day of emotions!  We were anxious and worried about Clara as we arrived at the hospital early this morning and at the same time felt calm and confident in the surgeons' ability to fix her today.  We have been so overwhelmed and honored with the flood of prayers that have come in for Clara throughout the day and have found ourselves wondering again and again how we have been so blessed.  The right doctors, the right community, the right family, the right baby.  So much is right.  We waited for about two and half hours while the surgery was completed and when the surgical team came out to tell us everything went okay we immediately felt a rush of relief and excitement and renewed hope.  A lot of emotions, huh?

Here's the medical stuff:  Clara's surgery was a success.  They were able to repair the diaphragm with a smaller patch than expected because there was more diaphragmatic tissue than they predicted and they were able to sew muscle to muscle on the side closest to her esophagus.  They did still put a gortex patch on the other side.  They were able to fit all of her organs back into her abdomen where they belong and stitch her up again without using a silo.  (One thing they did to help make this happen was "milk" her bowel of all its stool so it would be empty and smaller.  Isn't modern medicine incredible?)  We were all very relieved to hear this bit of news.  Her belly is firm, but not too tight.  We should see it begin to soften over the next 8-12 hours.  Her spleen, colon and intestine were all above the diaphragm, but the liver was below.  Her left lung looked normal - it's very small, but it did not appear collapsed or damaged which is great news.  Since the hernia was on the left side and that's where they did surgery, they didn't see the right lung during surgery.  We're still assuming that it is full-sized.  There were no problems with the ECMO circuit or with bleeding during the surgery.  They have done a chest x-ray to determine the placement of the tubes and cannulas post-surgery since now that things have moved around they could have shifted too.  More on that in a moment.  Her appendix is in an abnormal position, but that is okay.  He did not remove it.  Her stats stayed stable during surgery.  Her esophagus is in the right place and is a normal length.  Clara will take a little hit physiologically from surgery so the next few days are critical for her to return to square one and be able to begin focusing on weaning from ECMO.  Dr. Turner was also able to give us results from yesterday's echocardiogram which we did not have until today. It showed that her right ventricular pressure was much improved (down to 45 from 58.)

This afternoon after surgery Clara hit her first speed bump.  We were expecting these over the next few days, but it's still hard to hear news about setbacks when we had so many stable "boring" days before surgery.  She had a heart arrhythmia around 2:00, meaning that her heart started beating too quickly.  The first time they gave her a drug called adenosine to correct things and she recovered.  Then, she slipped into arrhythmia again and they gave her another dose which also worked.  The third time her heart started racing the adenosine did not work and they had to shock her.  Since then, she's remained stable and regular.  As scary as this sounds, the doctors seemed calm and not too panicked about things.  They think that the arrhythmia was caused by the large catheters in her neck that run to her heart to keep the ECMO machine going (cannulas).  Since things have shifted on her inside now, they think these tubes were just off a little and were "tickling" her heart and causing this arrhythmia.  Dr. Turner, with the help of a cardiologist and an echocardiogram, adjusted the cannulas about 1 1/2 cm.  They are watching now for recirculation issues which would cause her CO2 levels to rise too much.  If this occurs, they may have to re-adjust the cannulas again the other direction.  She is on some meds now to try to control the arrhythmia long term.  They have also given her some more blood and some more platelets because the echocardiogram showed that her heart was a little empty.  Her blood pressure and other stats besides the raised heart rate look good for now.  The latest chest x-ray seems to show that the cannulas can be adjusted a little more and Dr. Petty is on call tonight so he will probably do that.  They have also given her some insulin to manage blood sugar levels.   All of these small tweaks and adjustments are the kind of thing we were anticipating, but we are eager already to be on the other side of this surgical recovery so that we can start focusing on weaning off of ECMO and reducing pulmonary hypertension. 

Just to give you an idea of what the surgery did today, here's a before and after chest x-ray:

On the left you can see that her left side is full of lots of extra organs.  On the second x-ray, everything has been moved back down where it belongs and you can see her tiny left lung, surrounded by air/fluid in the space where her lung now needs to grow! 

Here's a picture of Clara's incision post-surgery.  We can't wait to teach Clara to be so proud of her scar and all that it means.  It will always be a beautiful reminder.  

 Today was a powerful experience of community for us.  Nearly 200 people signed up for a specific time slot to pray for Clara throughout the day and countless others told us you would be praying throughout the day.  We know that many were wearing turquoise today in honor of Clara and other CDH babies and you have flooded our inboxes with words of love, encouragement and prayers.  I can't believe how many people have rallied behind us and Clara and how the Lord has used this story to touch the hearts of people and move you all into action.  We believe with every ounce of our being that it is your prayers that allowed for today's surgery to be such a success.  It is a testament to the power of prayer and we hope that you have been moved as we have by this truth.  It is times like these that we find ourselves on bended knee, but it is a powerful reminder of what kind of prayer lives we want to always strive for, even in the midst of good times.  We cannot say it enough.  Thank you for your love, support and prayers. 

My class of second graders, donning turquoise for Clara
The staff of my school, showing their love and support
Good friends from church, also sending their turquoise love!
So, in closing tonight - we are grateful.  We are praising God for this important step along the journey for Clara and we want to make it clear that although we are thankful for the surgeons, appreciative of the medical staff and technology, and amazed by the procedures that can be performed, the glory all belongs to God.  He alone is the Great Healer. 

Here are some Scriptures that especially resonated with me as we prayed in thanksgiving today:

When I said, "My foot is slipping," 
your love, O Lord, supported me.
When anxiety was great within me,
your consolation brought joy to my soul.
Psalm 94:18-19 NIV

Shout for joy to God, all the earth;
sing the glory of his name;
give to him glorious praise!
Say to God, "How awesome are your deeds."
Psalm 66:1-3 ESV

Rejoice in the Lord always, again I will say, rejoice!... Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.  Philipians 4:4, 6-7 NASB

Now to Him who is able to do far more abundantly than all we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever.  Ephesians 3:20-21 ESV

May He grant you according to your heart's desire,
And fulfill all your purpose.
We will rejoice in your salvation, 
And in the name of our God 
we will set up banners!
May the Lord fulfill all your petitions.
Psalm 20:4-5 NKJV

You have turned for me my mourning into dancing;
You... have girded me with gladness,
That my soul may sing praise to You
and not be silent
O Lord my God, I will give thanks
to You forever.
Psalm 30:11-12 NASB

Keep praying.  Please.  Don't stop now.  And we will continue to give God all the glory.

Surgery Update

A quick report to let you all know that Clara is out of surgery and it went well.  We'll share more details in a longer post later tonight but wanted to thank everyone for all of your prayers.  We are praising our mighty and merciful God.  Continue praying as Clara will likely face some more setbacks in the next few days.  About an hour ago she had a heart arrhythmia and the doctors are working now to try to determine the cause of it.  She is currently stable and doing fine.  More updates later. Thanks again for your faithful prayers.

March 30, 2011

Preparing Our Hearts

I don't have many medical updates for today, which is good.  Clara has done a good job of pulling off those fluids (you can see how much less puffy she is), but perhaps too good of a job.  They stopped the diuretic tonight and have been giving her some blood components today because her blood volume seems to have been a little low today - the ECMO machine cut off several times throughout the day (it's apparently not as scary as it sounds.... they get it back going quickly!).  They've actually increased her sedation some, but this afternoon she was wide awake and looking around for almost two hours.  It was more than just a flicker of her eyes, but instead a real constant gazing and looking around and we were able to feel like we really connected with her.  I wonder what she's thinking about all that's going on around her....
We told her lots today about what a big day tomorrow is.  We've encouraged her to be strong and brave and to be a fighter tomorrow.   We hope she listens.  

If you haven't had a chance yet to sign up for a time slot to pray for her tomorrow, click on the link on the right side of this page (or go to  We are so excited that there are already over 100 people committed to praying for her tomorrow and we know that there are many, many more who will be praying for her throughout the day.  We will do our best to keep you posted once we know something after surgery.  I'm uploading several photos today and a couple of videos of her looking around too.  We also have added a few new things to this blog - there's now a Twitter feed on the right hand side and (FINALLY) a place where you can sign up to receive an email when the blog is updated.  I hope that these features will help you all to stay even more connected.  Thanks for all the scriptures that you have sent to share with us!  We will be praying over them all tomorrow.  

We cannot express enough gratitude and love to you all for following us so well and caring so much about us.  We're eager and anxious about tomorrow, but I truly am not scared.  The only way I can explain it is that it is God's peace that passes all understanding.  I should be a nervous wreck, but instead I just feel peace.  Thank you, Lord. 

Tonight we are just preparing our hearts for some serious prayer and meditation tomorrow.  We hope you're doing the same.  Gaze upon these precious sights:


Prayer Watch for Surgery

We know that there are hundreds or thousands of people praying daily for Clara Mae right now.  As we have said over and over again, we have really been moved by the way that people have mobilized on her behalf and united together to bombard God with prayers for our little girl.   It has been a powerful witness of how God's family here on earth can join together in praise, worship and supplication.  We are both honored and humbled to find ourselves at the center of such an amazing movement.  I would never have imagined that my baby daughter could have already done so much with her life.  What a blessing.

Tomorrow we face surgery.  This is a very big step along the way to recovery for Clara.  While the surgery will not fix her immediate problem, it must be done in order for her to start healing.  It is a difficult and complex surgery with potential complications.  After surgery, there will be a particularly tenuous time for Clara as she hopefully recovers and begins to show some improvement.

On the day of her birth, some friends from our church organized a 24 hour time of intercessory prayer on her behalf.  There were over 100 people who signed up to be a part of focused, intentional prayer for Clara.  Thanks to those prayers, she made a successful entrance into this world and those first 24 hours were her best 24 hours.  It's no coincidence.  So, we've decided to set up a similar prayer watch for the 24 hours surrounding her surgery.  Beginning at midnight on Thursday, March 31 and ending at midnight on April 1, we have thirty minute time slots where people can commit to praying for her.  It doesn't matter where you are in the country or world, just that you would stop whatever else you're doing and pray for her during that time.  Surgery will hopefully take place about 8AM and last around three hours, but the hours before and after her actual surgery are just as critical.  So, let's join together again and flood heaven with love and prayer for Clara.

We will obviously be in prayer that day too.  There are some scriptures that we've found especially powerful and touching during this time.  I'd like to compile a list of scripture to have with us while we're waiting and praying at the hospital.  Please share with us (in the comments here below or in an email if you'd prefer) scriptures that you think are applicable and encouraging with regard to Clara and her situation.  We believe in God's Holy Word and the promises within it.  We will be focusing our minds and hearts on that tomorrow. 

A small note - the website where you can sign up is doing maintenance today from 1:00PM-4:00PM EST.  You may not be able to sign up during that time.  Please be patient and visit again later, if necessary.  Sorry for that inconvience.

Thanks again for the love that you have shown us.  It is sacred.

The link to sign up is here.
Or cut and paste this URL:

March 29, 2011


It was a big day full of medical news and updates and another relatively slow and stable day for Clara.  Here’s the scoop! 

One of our big goals for this week has been to get her fluids down.  Yesterday they started her on Lasix, a diuretic that pulls off some of that fluid.  It is working well; yesterday she was negative 140ccs (she put out 140ccs more than she took in) and as of about 9:30 tonight she was negative 60 for the day so far and should be negative over 100 by morning.  She continues to pee well!  They gave her more Lasix today.  I mentioned that they had lowered her sedation drug (Versed) a couple of days ago.  We’d like her sedation to be as low as possible for several reasons.  The more she is able to move, the more the fluids go down.   We also want to reduce the likelihood of her building up a tolerance to the drug and the lower we can keep it the easier it will be for her to wean off of it and prevent withdrawal.  It will also help her with the ventilator.  With that said, we also want for her to be comfortable and she has been a lot more active and alert the past two days.  They’ve had to give her several boluses of sedation the past few days, so there was some talk of increasing her sedation, but for now she seems comfortable and happy, so it looks like the Versed will stay where it is.  That’s the news on her basic day-to-day stuff of today.  Other than those small changes, she’s holding steady and remaining stable and restful.

We had a chance today to meet with some of the big key players in Clara’s care.  We’re learning that there are lots and lots of different doctors involved in making decisions about her case.  This is due in part to Brenner being a teaching hospital and there being many medical students, residents and fellows on board.  Also, since her case is complicated there are doctors from lots of different teams who weigh in on her care (surgeons, PICU physicians, ECMO folks, nurses, etc.).  That’s a good thing because it means that many people are looking at her numbers and test results and are able to all collaborate together to come up with what is hopefully the best decision.  We know that nothing will “fall between the cracks” because there are so many people treating her each day.  The challenge of that is that every medical professional has different opinions and different ways of interpreting things.  So we don’t always hear the exact same story twice and it can be confusing for us as the patient/parents to not know exactly what is happening.  With that said, most of what we heard today from several different people was consistent!  That was refreshing and encouraging to us and made us feel like we’re starting to see some things as a little more clear cut.  My type A personality likes that.

Clara with Holli.  Holli has been Clara's nurse since she was put on ECMO last Friday.  She has worked six straight twelve hour days and cared so well for our sweet baby.  We are very very thankful for Holli and will miss her the next two days while she gets some much deserved rest.
The first person I talked to today was Luke, the pediatric surgeon chief resident.  I like Luke a lot.  He is very personable (especially for a surgeon; please excuse the stereotype) and did a very thorough and clear job of explaining to things to me.  Surgery has been scheduled for Thursday, March 31 – hopefully beginning about 8:00AM.  Dr. Turner will do the surgery, although he will be accompanied by a big team of folks including Luke, medical students, a scrub tech, an anesthesiologist resident and attending, and various other people.  Instead of moving Clara to the operating room while on ECMO, they will do the surgery in her room in the PICU.  I’m relieved about that because although they certainly can move patients who are on ECM O, this machine is huge and complicated and it just seems like an unnecessary risk if the surgery can be done where she is now.  The operating team will just come up to her room to operate.  This is how the surgery will go:  They will make a horizontal incision just above her belly button and take everything out (colon, spleen, liver, intestines, stomach, etc.)  Then, they will begin repairing the diaphragm.  Sometimes there is enough diaphragmatic tissue (Luke called it a “rim” of tissue) to just sew it together, muscle to muscle.  If this is true in Clara’s case – great!  However, they are expecting that the hole will be too big for that because of how many organs appear to be in the chest cavity.  If there is not enough tissue to sew together directly, they will sew in a gortex patch.  In about 40% of cases with a patch there is a recurrence and at some point, way down the road, the patch will have to be replaced.  The next step will be to attempt to close the belly.   They are hopeful that they will be able to fit all of her organs back in her belly and close her up since her stomach appears pretty round and full right now.  Many CDH babies have a stomach that is somewhat concave and the organs don’t fit back in the belly. If this is the case, they will put in a silo, which Luke described as a cylindrical plastic bag sort of like a newspaper bag.  They will put the organs into that bag and leave it on the outside while sewing the rest of her up.  Then, day by day they will slowly push her organs back inside of her and then will have to do a second surgery to securely close everything.  The surgery is expected to take somewhere around three hours. 

Dr. Turner came by a few hours later and basically confirmed everything that Luke had told us.  Although we know that all of the surgeons on this team are extremely talented, we are glad that Dr. Turner will be the one doing the surgery and have lots of confidence in his ability to operate (and Luke too!).  Dr. Turner told us a little more about the echocardiogram that was performed yesterday.  There does appear to be more left to right shunting which is good news.  They were unable to determine if the pulmonary hypertension has changed any because there was no blood seeping back into the tricuspid valve.  This is neither good nor bad; just inconclusive.  There is still high pulmonary artery pressure on her left side… it does not seem worse, but also does not appear to be much better.  There will be another echocardiogram tomorrow and we are hopeful we might be able to get more results from it.

He also gave us some results from the chest x-ray.  Her right lung seems full sized.  It’s a little hard to tell because her heart is on the right side (it’s displaced because all the other organs are on the left side where the heart belongs), but it appears to be a full sized right lung.  Her left lung is what he described as a “nubbin.”  It appears to be filling up one-fourth to one-third of her chest cavity.  This lung is the main source of our concern.  After surgery, we need for this lung to begin to inflate and to grow and to start doing its job in order for that pulmonary hypertension to decrease.   A week ago, that nubbin of a lung was in the center of her chest.  Now, it appears to have shifted back to the left side where it is supposed to be.  It is good that it has moved because that does show some progress and improvement.  The PICU attending doctor today showed us the chest x-rays and she said that she felt like it was likely that her left lung has also started to inflate some, in addition to shifting. Dr. Turner was not sure if we could tell that or not, but we are hopeful that it has because this is the kind of progress we will need to continue to see in order for Clara to survive. 

Dr. Turner was very honest and realistic with us today as well.  He reminded us that this surgery is “no walk in the park.”  Performing surgery while on ECMO is always a risk because Clara is on a lot of blood thinners right now.  And even if they’re able to perform surgery successfully, that is not at all the end of the road by any means.  I think the last week or so we have been so focused on getting her surgery done that we may have forgotten this important fact: the surgery can fix what caused the problem, but it doesn’t fix the problem itself.  They are able to get all of her organs in the right place and sew her up, but that won’t matter unless after surgery, Clara’s lungs begin to grow and fill with air and start working.  And unfortunately, there is nothing medical that we can do to make that happen.  There is no medicine to give her or procedure to perform that will cause that to happen.  We just have to trust that she will be a fighter and that her spirit will want this!  We truly need God to breathe His breath into her.  You see, moving all her organs doesn’t change the size of that tiny left nubbin and it won’t make her lung instantly inflate and start working.  All we can do is provide the support of ECMO and ventilators and give her the time to begin doing that on her own.  And as I’ve mentioned before, ECMO is a race against complications.  It is likely that after surgery Clara will get sicker before she gets better.  We need her lungs to start working before other problems start arising so that we can wean her off of ECMO and off of ventilators and off of other support.  In short, we still have a very long road ahead of us.  I think we’re so accustomed to surgery being the final step that fixes things, but with CDH it is just one hurdle along the way.  Today our eyes were opened to the many hurdles we will still have to jump over after surgery.   

Speaking of opening eyes… today Clara really opened her eyes.   This is a result of the sedation being lowered, but it sure was wonderful to see those two big beautiful blue eyes squint their way open and hold contact with mine.  I whispered to her over and over again, “Hi, Clara!  I’m your mommy and I love you!”  I can’t tell you how it makes my heart soar. 

Open Eyes

We also read books and sang songs today and I treasure each moment of my hand held inside of her tiny little fingers.  I’m so thankful that Clara is not a “touch-me-not” like some CDH babies and that I have the privilege and opportunity to spend these sacred moments with her each day.  I am thankful for my precious baby girl. 

Thank you all for your continued prayers.  I know this was a dense update, full of medical jargon and explanations.  I felt a little heavy today after talking with Dr. Turner.  I’m so grateful that surgery is scheduled and remain optimistic for Clara.  But it was certainly a reality check for me that we do have a very sick little baby here.  The stability of the last few days has been an answered prayer and we are so grateful for the time of rest on ECMO.  However, after surgery we will need more than rest and stability; we will need to see our girl start to really fight for her life.

Things for you to pray for: Praise God for her continued success with small goals along the way like the reduced fluids and the shifting (maybe inflating?) left lung nubbin.  Please pray for her surgery on Thursday.  Pray for the team who will be operating on her and for no complications from the surgery.  Pray that it is as simple as possible – that perhaps no patch will be needed and that her organs will fit back inside her belly during this surgery so that a silo and a second surgery will not be necessary.  Pray that she will remain strong after surgery and that there will be no backsliding or if there is that it would be minimal before she starts improving again.  Pray that she will be a fighter and that she will have a spirit of tenacity and a strong desire to fight for her life.  Pray that her left lung will gradually grow and inflate and that her pulmonary hypertension will resolve.  Pray for our family as we continue to try to listen and understand the doctors and as we pace ourselves for this long road ahead. 

We truly believe that the thousands of focused prayers on the day of her birth were behind her successful entrance into this world and that your continued prayers in the days since have been what has kept her safe and stable while on ECMO.  Don’t stop now!  We’re looking into setting up another intercessory prayer webpage to allow you an opportunity to sign up again for a slot of time to specifically pray for Clara on Thursday.  Stay tuned for that.

Also, I want to mention that Thursday (March 31) is National CDH Awareness Day.  We think it is no coincidence that the day Clara will have her operation is a day that CDH families across the country are trying to help raise awareness about this birth defect that affects so many children (1 in 2500), has such low survival rates (nationally only about 50%), is as common as spina bifida and cystic fibrosis, but that very few have heard of.  We hope that Clara’s story has helped to spread the word about CDH.  In her support (and in support of all CDH babies), national CDH organizations are asking people to wear turquoise on Thursday and help spread the word about CDH. 

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint." (Isaiah 40:31)

"For I will restore health unto you, and I will heal you of your wounds, says the Lord."
(Jeremiah 30:17)

"Behold, I will bring you health and cure, and I will cure you, and will reveal unto you the abundance of peace and truth."  (Jeremiah 33:6)

March 28, 2011

Getting into a Groove.

Today has felt like we're getting into somewhat of a routine. I knock on wood having said that, because I know that we could have everything change without warning, but it was the fourth day in a row without any major drama, with Clara doing well on ECMO, and us playing the waiting game to see when she'll be ready for her surgery, so we were able to get into more of a groove than we have been. Chrissy and I moved back into our own house, and I went back to work. Since we didn't spend the whole day together, this post will have a little more "me" than "we."

I started out today's work day with a side trip to Brenner to see Clara at around 9am. I planned to just pop in and talk to her some and then leave, but before I knew it, it was after 10. It's amazing how quickly time passes when I'm at her side; it feels like I can blink and I've been there for hours. I guess that time flies when you're having fun, but it launches into orbit when you're completely, hopelessly smitten.

I reluctantly tore myself away and went out to call on some nursing facilities and make a few deliveries (Note: for anyone who doesn't know, I am a representative for a company that provides splints/braces and other medical goods for nursing home residents). It was really good for my psychology to get out and get some work done, partly to provide a distraction, and partly because I work on 100% commission, and we have some pretty significant medical bills pending. But it was also good because I have found myself supported, loved on, and prayed for by my clients that I call on. To have people cross the boundary from customer to friend, to have them drop professional pleasantries and give you a big bear hug and tell you that you're in their prayers, that's powerful. And it fills reservoirs that have been emptying. And it reminds me of the ever-repeating miracle that we can step outside ourselves to connect with and care for others.

After work, I went back to the PICU to soak up just a little more time with Clara. This seems as good a place as any to brag on the staff at Brenner Children's Hospital. Every single nurse, doctor, respiratory therapist, receptionist, and whatever other titles we've come into contact with there has been patient, helpful, and compassionate in a way that you don't often see. If any of you happen to be reading this, we can never thank you enough for all that you do to take care of our little girl and facilitate her healing. You also deserve a lot of credit for caring for her parents and grandparents, whom you have helped immensely. I can't imagine Clara being in better hands, short of those of the Creator himself.

Chrissy urged me not to let myself stay for more than 45 minutes this time; after all, meals and sleep have to happen at some point, and those take time too. I stayed every second of that 45 minutes though, holding her hand, touching her toes, kissing her head, and talking to her and telling her how much her mother and I love her. My favorite thing to tell her has become "Clara, I want you to have a good day. Because when you have a good day, I have a good day." And I finally got to see her open her eyes juuuust a crack and look around, before she fell back asleep. That half-second sent me soaring.

I returned home (again, reluctant to leave Clara's side) to a wonderful meal cooked by my mother, who has selflessly given up her Spring Break to be our live-in nurse, chauffeur, maid, butler, and chef. And now, my eyelids are starting to droop a bit, so I'm heading bed-ways momentarily.

But first, the medical updates for the day:

-Another blessed boring day for the most part, with Clara resting and getting some fluid off.
-An ECG (Echocardiogram) was done to try and gauge the pressures in her lungs, but unfortunately didn't show us very much.
-We've been told that the pediatric surgeons are looking tentatively at Thursday to perform the surgery to repair her diaphragm, but that is not set in stone and could change with her condition at any point.

Like I said, pretty boring, stable day, so there's not much to report. We're glad of that.

Prayer Requests:
-Pray that her pulmonary pressures would drop significantly. They're less of an immediate issue at the moment, because the ECMO machine is doing the work for her, but the less time on ECMO, the less chance of ECMO-related complications, and the sooner she's able to pump blood through those pulmonary blood vessels, the sooner she'll be able to go without ECMO.
-Pray for her to be able to get rid of her fluid build-up; she's on Lasix to help get rid of some of it, but we'd like to get rid of a lot more before she goes into surgery.
-Pray for the doctors and surgeons that will be making very serious decisions about Clara's care in the coming days and weeks.
-Pray for the day when she can come home to us. We prayed tonight for God to bless her entire life and to let her grow up and be an incredible testament to his love for decades to come.

-Don't forget to follow @PrayForClara on Twitter. This will be one of the ways that we can update during the day without having to sit down at a computer and bang out a full blog post. Even if you aren't signed up for Twitter, you can easily check it for updates by going to
-A lot of people have been asking what they can do to help us out. We haven't actually had time to think a whole lot about it. We'll get back to you. Right now the #1 thing is to pray for Clara and for us.

It's midnight. I'm about to pass out on the keyboard. I love you all; thank you for caring for us, and thank you especially for loving our little Clara.


PS - Oh shoot. I forgot that I had this whole thing I wanted to say about the etymology of the phrase "Getting into a groove." I'm crazy about analogies, and the phrase is derived from working a saw. The saw tends to jump around a bit until you can make a groove and get the saw down into it. Once "in the groove," you can focus on the action at hand and your work gets much more efficient. A lot of people hear that phrase and take it to mean that you're getting into a routine, and can just coast, but when you're sawing, you've got a specific goal in mind: turn one big thing into two smaller things. We've got a specific goal in mind too: bring our girl home. And our routine is getting a little more efficient, so that we can put our energy into getting that goal accomplished. But sawing can't be forced. Anyone who has ever used a hand saw can tell you that you have to let the weight of the saw do the work. We know that we've got to let go and let another Force do the work here too.

That whole digression probably would have gotten me a B- at best in one of my classes in Park Hall at UGA's English department, but I thought of it and liked it. Cut me a break, it's late.

Ok, goodnight for real. Love and Peace.


March 27, 2011

Day Five

We had another rest-filled day for Clara and are praising God for these hours and days of stability.  We thank you all for your prayers and ask that you please continue praying that she will stay stable and continue to make progress towards being ready for surgery.  We’re taking small steps, but celebrating each little victory along the way.  In addition to getting off of the dopamine yesterday (which was apparently a bigger deal than I even realized), today she also began to reduce her sedation.  Obviously, we will leave her sedated some so that she is still and comfortable, but reducing her versed is another goal because it also helps her systemic blood pressure.  She was definitely a little more alert today, kicking her legs and responding more to touch and even light.  The nurse said she even had her eyes open some this morning, although we did not get to see that while we were with her.  Tomorrow, she will begin some Lasix which is a diuretic.  This will hopefully help get some more of that fluid off.  She will also have another echocardiogram tomorrow to determine how her pulmonary hypertension is doing.  This is the biggest factor to determine her surgery and one of the main things that we ask for you to continue praying for.  Go away pulmonary hypertension!!

Yesterday we mentioned that Clara might get some of my breast milk today.  They did place the NG tube (in her nose) and begin giving her a trickle of milk.  Then, a couple hours later the attending surgeon (Dr. Turner) had a chance to consult with her primary surgeon (Dr. Petty) and they decided to stop the milk for now.  Although the nutrition would be great for her, we cannot tell right now if she has a bowel obstruction or not since all her guts are smooshed and in the wrong places.  Dr. Turner said he thought that it was unlikely, but just to be safe we don’t want to create a bigger problem there.  So breast milk is on hold until after surgery for now.  She will  continue to get full nutrition through an IV (called TPN) and they are looking to gradually increase her dextrose in that dose.  It started at 10 and is expected to be at 17 by tonight.  Those extra calories will give her more strength as well. 

Her respiratory tidal volumes (how much air she’s breathing in) were better today as well and the chest x-rays look like the pneumothorax that she has a drain for is starting to resolve. 

Robert and I got to rub some lotion on her today and it was great to hold her little arms and legs and be able to care for her as parents by meeting one small need.  I continue to pump milk and freeze it for her – I’m pumping about every 2 hours to keep the supply up and make sure my body doesn’t figure out there’s not a baby there right now.  That means that a huge portion of my day is spent pumping and washing pump pieces.  For instance: I pump at 6:00 for 20 minutes.  Store the milk and wash the pieces and it’s about 6:40.  Then, I pump again at 8:00.  That’s a lot of the day (and night!)  Waking up during the night to continue pumping means that a nap in the afternoon is imperative.  I’m starting to figure out what a routine and schedule will look like for the next few weeks.    Since being discharged from the hospital yesterday, I’ve been staying at my parents’ house to have my mom help with things.  But tomorrow, we plan to move back home and begin to settle in there.  Fortunately, Robert’s mom is here all week (thank goodness it was her spring break!), so she’ll be helping to take care of me, cook for us and drive me back and forth to the hospital next week.  Thanks to the many of you who have asked how I’m doing.  I’m recovering very well from the C-section and am feeling good as long as I stay ahead of the curve with pain meds.  I’m glad I’m feeling good because it means I can focus on Clara. 

Robert returns to work tomorrow.  It will be very difficult for him to be away from Clara, but we know that the distraction is probably helpful in some ways.  Plus, he’s in sales so his salary is 100% commission.  We need him working to be able to pay the medical bills that will be coming.   Remember him as he tries to re-enter reality some tomorrow. 

That’s about it for today.  Things to pray for: reduced pulmonary hypertension, continued stability, wisdom for doctors who are making decisions about her care and specifically about when surgery will occur, continued protection from the many potential ECMO complications, Robert’s return to work, strength and rest for all of us.  

Clara's hand holding on to her "Irish Bunny"

Mommy and Daddy loving this precious girl so much

Mommy loving Daddy; Daddy loving baby
Aunt Stacy meets Clara!

Daddy can't stop kissing that sweet little head


Today I am thankful for rest.  I have been thinking a lot the past couple of days about rest and I am grateful that God designed us to need rest in the way that He did.  So much good comes from rest – we are renewed, we are refocused, we are given life and energy.  In the days after Clara’s birth I sought rest desperately.  Having a baby is tiring.  Traveling back and forth between two hospitals wears you out.  Recovering from major surgery demands rest.  And yet, having a sick baby brings worry and fear and anxiety – all things that steal away rest (also nurses who want to check your blood pressure and temperature and blood and press on your belly every hour in the hospital….)  So the moments of rest that I have found have been so precious and so treasured. 

God has modeled this for us.  After six days of creation, what did he do?  Took a Sabbath – a day intended purely for rest.  He also made this day of rest holy.  Rest is holy.  “By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work. Then God blessed the seventh day and made it holy, because on it he rested from all the work of creating that he had done.”  (Genesis 2:2-3) He calls us to do the same.  And even better, He tells us to give over all the things that impede our rest to Him.  “Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”  (Matthew 11:28-30)  Not only does God want for us to rest, he wants to help us do it.

As I’ve been thinking about rest, I also realized (aha!) that rest is the root word of restore.  Clearly, I’m no linguist, but that connection was a powerful moment for me.  In order to be restored, we must give in to rest.  We must allow for rest.  We must embrace rest.   And we will be restored not only emotionally and physically, but spiritually.  While Clara is on ECMO she is resting.  That is what this time is all about for her.  She is resting her heart and resting her lungs and resting her sweet little body.  It is our continued prayer that this time of rest for her will lead to restoration.  Just as I am trying to nap between pumping and put my feet up while at her bedside, the rest that Clara is getting now is hopefully preparing her body for a big fight ahead.  Again, I am thankful for ECMO and I am thankful for rest.  What a beautiful gift. 

And so, in the weeks ahead, we will continue to be intentional about carving out time and space for rest in our lives and of course for Clara.  It is my hope and prayer that this is not just any kind of rest, but a sacred rest that is centered on God’s renewing and restoring love. 

Psalm 62:5-8
Yes, my soul, find rest in God;
my hope comes from him.
Truly he is my rock and my salvation;
he is my fortress, I will not be shaken.
My salvation and my honor depend on God;
he is my mighty rock, my refuge.
Trust in him at all times, you people;
pour out your hearts to him,
for God is our refuge.

Rest, sweet baby.

*Today’s medical update coming soon.  Didn’t seem quite right to mash that in with this….
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