Sweet Cheeks

And they're free again!



At least for now...

 We'll pray she eats like a Hardy...

And continues to gain weight this week.

So that tube won't have to go back in!

And we can continue to admire those precious little cheeks...

And perfect little smile.

Grow, Clara, grow!

 

So, the doctor today was - once again - surprised by how well Clara has done.  She said something like, "I don't usually see babies who are doing this well... I'm not quite sure what to say."  But we're giving it another shot!  I'll breastfeed exclusively for the next eight days and when she goes back to the pediatrician next Thursday if her weight gain has been adequate, we'll be able to stay free of the NG tube.  The only downside of this is that we're back to trying to get that nasty pulmonary hypertension medication in her orally (three times a day - ick!).  So any of you out there who are still reading, please pray hard this week that Clara continues to eat well and gain weight....especially during the night when we'll have to wake up sleepyhead and try to make her eat.  I'm a little anxious about this, but oh so hopeful.  To me, this feels like the last big hurdle before I can take a deep breath and relax a bit.  Eat, Clara. Grow, Clara.  And take your medicine!! 

Carolina babies... sweeter than the tea

There's not much I love more than a glass of sweet tea, but here's one thing for sure:

She truly is sweet.  Great report from the pediatrician yesterday; Clara gained nine ounces this week and is now weighing in at 11 pounds, 12 ounces.  We're replacing her first nighttime gavage with breastfeeding and beginning the process of weaning that NG tube.  Tomorrow's appointment is with the developmental pediatrician who is an eating expert.  We'll see what she has to say about our progress.

Clara at Home

Whew.  It is much harder to find time to blog with Clara here at home with us.  It’s a pretty fantastic problem to have.  Clara continues to sleep really really well at night (12-13 hour stretches, uninterrupted thanks to enteral feedings through her tube).  This rest is great for her and is helping her grow.  Robert and I are still up every three hours to start those bolus feeds and for me to pump, but we’re so very thankful that this baby rests well.  Those long hard stretches of sleep at night mean that she’s not really that into napping during the day.  She takes 3-4 thirty minute naps throughout the day and that’s about it.  But I’ve figured out her routine (for now, at least… I’m sure that since I’m writing that she’ll change it up immediately) and have learned her cues pretty well.  She eats every two and half hours or so, stays awake and plays for awhile after eating and then takes a thirty minute nap before it’s time to eat again.  We’ve gotten a good naptime routine down (paci, lovey, mobile, her sound machine and some Classical music) and she will put herself down for a nap in her crib pretty well, although her favorite way to nap is in the stroller on a walk or in the carseat during a drive.  Our nighttime routine is coming around too – a bath (which she no longer hates), jammies, swaddled up for reading books, singing a few songs, saying prayers and then off to her crib with her sound machine, Mozart and a lovey.  What we were always told about a NICU baby seems to be true – she sleeps just fine with lights and noise, maybe even prefers it to dark and quiet.

When she’s awake, she’s happy.  Oh my, is she happy.  We keep saying, “I guess if we’d been through all she’s been through, we’d be pretty happy too,” but I know that many babies who have faced chronic sickness like this don’t have the pleasant disposition that she does.  She is very rarely fussy.  She is almost always smiling and loves to babble and talk – especially when you’re singing to her.  I think she’s trying to join in!  She’s very social and likes to be talked to and be interacting with people.  She loves her swing, her bouncy seat, her stroller and her playmat.  Of course her changing table is a favorite spot, too, as is naked time.  We’re working on tummy time to build up her strength and although that’s not her favorite, she’s doing better with that every day too.  Her favorite place to be is outside.  She can’t get enough of the fresh air, the trees, the birds and the sounds.  Her eyes open so wide and she just takes it all in. The slight respite from the oppressive heat this week has been nice.  Even on sweltering days though, we’ve found ourselves on the screened-in porch a lot.  We’ve made one trip to Costco, one trip to the grocery store and an epic outing to Greensboro for me to order a bridesmaid dress.  Even though she’s been such a trooper through that, the excursions and the very few visitors we’ve had do wear her out, so we’re trying to make a conscious effort to keep things quiet and low-key as much as possible.    

We’ve been to see her pediatrician twice – once on the Friday after discharge and again the following Monday.  She gained three ounces in her first weekend at home (average of an ounce a day!) and we’ll visit the pediatrician again tomorrow for another weigh in.  She’s been eating really well, so I’m expecting more weight gain to be shown then.  All of our follow up appointments begin this week.  I’ve been warned that the feeling of “normal” that we’ve experienced the last week or so might feel a bit like a honeymoon coming to an end this week as we visit lots of doctors and are reminded that we still are caring for a sick baby.  We will be following up with: her regular pediatrician, pediatric surgery, cardiology (for pulmonary hypertension) a developmental pediatrician with a program called “Kids Eat” for feeding issues, physical therapy, and speech/hearing.  That’s a lot of appointments, but we’re prayerful that we’ll get good reports, that we will continue to see weight gain which seems to be the biggest indicator of health, and that we can begin taking steps towards weaning her off the feeding tube for good pretty soon. 

So, we’re all doing well!  I’ve been so so so so blessed to have my mom spend most of each day with me since we’ve been home.  It’s like my own personal baby-nurse.  She’s helped me get the house back under control (apparently spending eleven weeks at the hospital will make a lot of things fall by the wayside!), made sure we had meals to eat, given me adult interaction, and been an enormous help with Clara.  We’ve been calling her “The Burp Whisperer,” because she can get a burp out of Clara when no one else can!  The timing for Clara’s homecoming has been great since the academic year at Salem was just wrapping up and she’s been available to help in so many ways.  I’ll be sad when the day comes that she has to leave me all on my own!

Okay, here’s what you really want to see.  Photos of Clara at home! 

Hanging out on the screen porch

Snuggling Dad in the recliner

Taking a nap in my very own crib

I love my changing table!

I spend lots of time in the glider with mama

Family's first walk

This stroller is fantastic!

Loving her swing (thanks, cousin Eleanor!)

Patchwork baby on patchwork quilt

Kicking my legs and sticking out my tongue

Rufus is never far away

This bouncy seat is pretty fantastic, too (Thanks, cousin Caroline!)

My first walk with my destined-to-be-BFF Chloe

Snuggling Big Daddy

Playing on my playmat (Thanks, Cathy!)

So much to learn!

Listening to Sweet Mama sing on the porch

A few new additions to the nursery

What a wardrobe!  Thanks for all the hand-me-downs from cousins and from my buddy Palmer!

lots of hairbows...

Couldn't resist this clock for her literature themed nursery

Family shot

Life is good.  God is gracious.  We are continually thankful for this special blessing.

Dads

It’s that day, once a year, when we pause to think about the important men in our lives, fathers and fatherly figures alike, and to thank them for the ways that they have helped to shape us, the lessons they have taught us and the love that they have shown us. This year, in addition to thanking my own daddy and father-in-law who are both wonderful men, I get to celebrate Robert as a daddy for the first time. 

Robert and I celebrated our third wedding anniversary last Tuesday.  I had written some of this for him then, but blogging hasn’t really been at the top of my list the last week or so, and hence I never got it published.  But here’s a little tribute to one of the newest dads on the block, who is also one of the finest. 

When Robert and I exchanged wedding vows three years ago, I never would have imagined that we’d go through all that we’ve been through together the past year.  I wrote before Clara was born about how grateful I am for this baby daddy and that love has just multiplied each day since her arrival.  He is the perfect match for me and already the perfect daddy for Clara.  Our personalities are polar opposites (except that trait of stubbornness that we share) and that balance keeps us in check with each other and the world.  I hope that our differences will serve as a powerful and balanced role model for Clara as she grows up, too.  Robert is laid back and calm and easy going.  He doesn’t get stressed out easily, even in the most stressful of situations.  He is patient.  He is rational and analytical and able to approach problem solving with his brain (while I’m often going at it with my heart), but he is also full of passion and love that is unparalleled.  I love Robert for his intelligence and his sense of humor, but most of all for his faith.  I’ve always marveled at how easily Robert places his complete and total faith in God.  He’s often the one to remind me (and especially the past few months) that if I say I’m going to trust God, I have to show it by stopping my incessant worrying and desire to control things.  He’s so right.  He loves his family and friends and will teach Clara well about the importance of surrounding yourself with people who are dear to you.  He will also teach her about God’s creation and is already spending time with her outdoors, showing her the trees and birds and sky and telling her all about this wonderful world that God has made for us and entrusted us with.  Soon after Clara was born, when the doctors were telling us that she wasn’t going to make it and telling us to prepare ourselves to let her go, Dr. Block told us something that has really stuck with us.  He said that 50% of marriages in the U.S. will fail.  An experience like we’ve been through just hastens the inevitable.  The marriages that were going to fail eventually anyways cannot endure the stress and fear and anxiety of a sick or dying child.  The marriages that are between soulmates, that were destined to last, become strengthened in a way that is indescribable.  I know beyond a shadow of doubt that we fall into that second camp and I’m grateful for the ways that God has used this tough journey to draw us closer to one another instead of driving us apart.  It’s been hard the past few months to always put our marriage first, but Robert has been so wonderful about continuing to insist on an occasional date night, about making sure that I get the rest I’ve needed, about taking care of our house and yard so that I could spend the time at the hospital that I did, for waking in the night to help with Clara’s feeds, for encouraging me and supporting me when I didn’t think I could do this anymore, for allowing me to have my moments of meltdown and for holding me and loving me when I was a crazy lady, and for so much more.  I’m grateful for every bit of that because it is a tangible expression of the way that he loves me and cares for me.  But I’m also grateful in a new way now, because I see the kind of model that he will be for Clara.  I recognize that those gestures are not just for me, but that they are teaching Clara about what a good man does.  She will learn right from the start about how important it is for a man to put his family first and her daddy will set the bar high for her to find a man as good as he is.  I cannot imagine being a mother to Clara with anyone else in this world besides Robert by my side.  I’m fortunate to have him as my husband, and Clara is truly blessed to have him for her daddy.  Robert, these girls love you.

I’m also thankful on this Father’s Day for my own father.  We are cut from the same mold and the similarities in our personalities have meant that we’ve been known to clash from time to time.  One of the great blessings that has come out of this experience with Clara has been a renewed bond of father and daughter between me and my daddy.  He’s said, “I love you” to me more the past three months than I think he had in the past ten years before.  Clara has softened his heart a little, and I’m so thankful for that.  I’m also thankful for the many things that he has taught me over the years and the inspiration that he is as a parent.  He has shown me the importance of sticking up for yourself and taught me just exactly how to do it.  I was able to be the kind of advocate for Clara that I was during her hospital stay because that was modeled for me by my own father.  He has taught me the power of words and how to negotiate.  He has taught me the importance of managing your money and modeled generosity for me in a way that I aspire to, but may never be able to live up to.  He has instilled in me a love for travel, a sense of adventure, a quest for knowledge and a drive for excellence.  He has given me a sense of righteous indignation and tenacity that I know is not just genes, but also years of watching him fight for the things that he believes in.  He has a tough exterior, but I know that beneath that he loves me and my brother with every ounce of his being and that he would do anything in the world for us.  That unconditional love can only come from a parent.  He has always set high expectations for us and my desire to make him proud and not disappoint him has helped me achieve a lot of what I have in my lifetime.  He has also taught me how to laugh and the joy of humor.  I remember as a child being tucked into bed upstairs and hearing my parents with friends downstairs still entertaining.  There was nothing sweeter than drifting off to sleep to the sound of my daddy’s raucous laughter.  It’s like music to my ears. I hope that I will model all of this and teach it all to Clara.  I’m proud to be a Hardy, but know that deep down I’m a Davis.  And as my daddy and I always say, “You don’t mess with a Davis.”    

I can’t leave out my other father – Daddy Bob.  Thanks Bob, for teaching Robert how to be a man, for instilling in him a wonderful faith and for raising him right.  You done good.  I can’t imagine how proud you are to watch him become a father too.  I pray he follows in your footsteps, for you are a wonderful man and an outstanding father.  I’m very thankful for you. 

This Father’s Day, my heart is full.  I’m thankful that we’ll be celebrating all together at home and that I am blessed with such wonderful men in my life.  It’s true what they say – a good man is hard to find – yet somehow three of them found me.  Thank you, Lord.  

78 Days Later

Clara is sleeping.  Robert is starting her 9:00 tube feed.  I'm sitting down to try to catch you all up on our discharge day. 

First of all, many many thanks, once again, to each and every one of you for praying us through to this point, for offering encouragement and advice and love, and for celebrating so joyfully beside us at God's mercy, grace and blessings.  We stand in awe of His power and glory and praise him for what an amazing thing He has done in our lives.  We never would have imagined that we'd have so many people, many of you strangers, to walk this journey with us and we will be forever grateful for you.

On Wednesday, there started to be some talk of discharging on Thursday instead of Friday.  Dr. Block felt like our plan of daytime breastfeeding and nighttime gavaching (that's the feeding tube) was going fine and that we really could go ahead and get out of there.  Couple that with a really really nasty case of mastitis for me and he was eager that we all just get home to our own space.  So Wednesday was a flurry of final appointments and meetings with lots of folks to get checked off on things.  Wednesday night Robert and I learned how to put in Clara's NG tube through her nose which was fairly traumatic for me, but now it's done and I never intend to do it ever again (I've made enough nurse friends the past 11 weeks... Holli, Crystal, I will be calling you if that tube comes out).  Then, we roomed in one last time to make sure we were able to handle the feeding pump and all those logistics.  I was as sick as a dog, so fortunately Robert took care of Clara all on his own that night and just roused me every few hours to remind me to pump, take advil, and go back to sleep.  Thursday morning we got the official word that we could go.  A quick note - if you ever spend 78 days in the hospital, you may acquire more stuff than you realize.  It seems that a significant portion of Clara's nursery had slowly been moved to Brenner's.  My poor mother made about 5 trips to the car (and dealing with the elevators that many times at Baptist Hospital is a real gift.)  Finally, about 2:00, we got Clara dressed in her special going home outfit (Thanks, Mere) and we began saying our goodbyes.  We said goodbye to Karen, our daytime nurse in Intermediate.

Karen, one of Clara's intermediate nurses

 We said goodbye to the rest of our NICU friends who we have loved and been loved by so well.  Of course, not everyone was there that day or at that time and it felt weird to not be giving each person who touched us so dearly a proper goodbye.  We did get to have final hugs from Dr. Block, whom we will never forget.  He "bookended" us, as he called it - both admitting and discharging Clara.  And he was with us through some really difficult days at the beginning which made this day of leaving so extra special for him and for us. 

And then we went back to the PICU where we spent the 22 days that Clara was on ECMO.   Those were the hardest days of our lives and in crisis you can really bond and connect with people in a very unique way.  We love that PICU staff so dearly and felt their love so richly as they doted on Clara and expressed their excitement for us to be carrying her out the door. 

Just a handful of the PICU nurses who we love so much.  Wish we could have seen the whole PICU and NICU staffs...

 We spent 78 days at Brenner Children's Hospital and on Thursday we walked out of those doors changed people.  We will never be the same for the experiences we had in those 78 days.  God has taught us much, poured out love and mercy on us that we have not deserved and blessed us richly in countless ways.  Although I wouldn't wish what we've been through on anyone, in a strange way I kind of treasure this time.  I've been in the middle of a miracle.  How remarkable is that?  I have felt incredible sadness and fear and despair, but also experienced such incredible peace and joy and hope that I think may only be possible with the former.  In short, I am thankful.




Clara was wide-eyed and alert as we left the hospital.  She was truly taking in the sights all around her and seemed amazed and interested that there is a world outside of the NICU.  When we walked through those doors and she experienced "outside" for the first time, her eyes were so big and happy.  She likes being free.  Just as Robert pulled up with the car, she dozed off for the first time in hours.

Dozing off as Daddy drives up

When we placed her in her carseat for the first time, those eyes shot wide open again and she cried and fussed, but only for a moment before settling down for her first car ride.  She gazed out the window of the car for awhile and eventually slowly nodded off again.




Once we got home, we took Clara in the proper way through her front door and beneath the gorgeous banner made for her by her Aunt Wendi.  We paused very briefly (it was 98 degrees) for a few quick photos like the one you've already seen.
 


Then, it was time for Clara to meet Rufus.  In all the excitement, we broke all the rules about how you're "supposed" to introduce the new baby to the family pet.  Good thing Rufus is the world's most perfect puppy.  He was excited to meet his new baby that we've told him all about, but behaved like the perfect gentleman and didn't jump on her or anything.  Since he's had two and half months to smell her on us, I think he knew right away what was going on.  He's always been great with kids, but we all felt sure that he somehow knew from the start that she was ours.  Mostly, he's glad to have his people back at his house and around a little bit more.  He's hardly left our side (or Clara's) since we've gotten home.  And yes, Clara has already been indoctrinated with her first few face kisses.  She was just fine with them.

Rufus and Clara meet, at last

In our first hours at home, Clara just looked around like she was trying to figure things out.  All the lights and colors and smells were new, but she never fussed, she just refused to sleep.  Too much to take in, I guess!  This is the expression we mostly saw.



She has slept well at night and eaten well during the day since we've been home.  Mama, Daddy and Clara are all doing well.  We'll write more about our first few days at home in another post.  But, as many of you have anticipated, this is in many ways the end of the story.  We still have some medical obstacles to overcome like getting Clara's feeds all oral and that NG tube gone.  While we are eternally grateful to be home and have Clara with us here, our lives are not instantly "normal."  We've been told by doctors to protect her from people and keep her fairly isolated, calm and restful for the first several weeks or months.  We have a big stack of appointment cards for follow ups with various doctors and that will probably dominate our schedules for quite some time.  And of course, there's just the normal "adjusting to life at home with a baby" stuff.  I'm learning Clara's routines and cues and we're all trying to figure each other out.  All this to say, I will continue to write and post photos, but probably not with anywhere near the frequency that I have the past three months.  We appreciate your continued prayers for us for we know that we still have some struggles ahead of us.  We do feel some sense of closure at this juncture, just knowing that the worst is behind us.  And hopefully over time this blog will evolve back to its original purpose - just a random post here and there about a family trip to the zoo or a special birthday celebration.   Hopefully it will begin to contain a lot less medical jargon. 

Since many of you have asked, yes - I do intend to print this blog in book form.  (There are several cool websites that do this for you).  It's the best way I know to be able to tell Clara her story someday when she is old enough to understand.  This post will be the last in her book.  It is my prayer that when she reads her story, she will know deep in her soul how special the beginning of her life was, that she will recognize the power of prayer, that she will be inspired by the fervor of a community of believers, that she will be humbled by knowing she is one of God's special miracles and that she will always know how very much she is loved by many, but most of all by Her Creator.

Thanks Be To God.