Things I Love

Time is already passing so fast with Clara.  I just want to freeze things where we are and enjoy the last few days and weeks of her “infant” stage because I can feel it starting to slip away already.  Maybe it’s because I missed out on so much of it during her hospital stay, but I just feel like it can’t possibly be time yet for her to be outgrowing clothes (check), holding up her head (check), trying to roll over (check), and kicking her legs like an Olympic swimmer (check).  I know that the next stage will bring fun and exciting new things of its own, but I’m trying hard to savor the moments now that I love so much and know won’t last forever.

Things I Love:

The way her whole face erupts in a giant grin when I get near and talk to her.

The way she looks swaddled up in her baby burrito for sleeping.

Her fingers curled around mine while she nurses

The feeling of victory when I coax a “man burp” out of her.

The way she grabs on to blankets and loveys or her dress and holds on for dear life.

The smiles on her face as she drifts off to sleep

Milk on her cheek after she finishes eating.

Her beautiful hands always held together now, and often in her mouth.

Teeny tiny baby sneezes, coughs and hiccups

Her big blue wide eyes, still taking in everything around her.

Big stretches when she wakes up and is freed from her swaddle.

Seeing her Daddy hold her and look at her like she’s the best thing that’s ever happened to him.

Watching Sweet Mama sing to her and listening to her try to sing along.

Listening to Big Daddy talk baby talk to her and delight each time she laughs at him.

Rocking her.

Smelling her after bath and lotion when there’s no sour milk, just sweet sweet baby.

And I think very best of all, holding her while she sleeps soundly with her face nuzzled in my chest. 

There have been some moments the past week where she has shown that same fighting spirit that has allowed her to be alive today, but instead of fighting for her life she’s fighting me.  Fighting to eat, fighting to sleep…  Since I’m tired too, it’s not hard to feel overwhelmed with her determination.  But I’ve just been reminding myself that her stubborn personality is what saved her life and to thank God in those moments for her strong will.  And for each one of those moments, there are dozens like the ones listed above.  My heart is full of love for this sweet thing and I’m cherishing what’s left of the new baby moments.  Pretty soon she’s going to be full of personality and there’s no telling what new things I’ll grow to love and cherish.  

Fourth of July

Clara got to wear a matching dress with her cousin Caroline!

 

 And be doted on by all four grandparents...

 

 

And Mom and Dad, too...

It was a grand Fourth of July celebration complete with all things red, white and blue...

And the love of good friends and family...

Of course, I couldn't resist a little photo shoot of my own, with Clara in her flag dress and also in her ladybug outfit, bought by her Great Great Aunt Shirley for Cousin Caroline's first Fourth of July last year and passed on to Clara for this year. 

We're thankful for this great country, the freedoms that we have and the blessings of summer celebration with all of us together!  Happy Fourth of July!

Good News, Bad News

The Good News: Clara hasn't lost any weight since we pulled the NG tube.

The Bad News: She hasn't gained any either (okay, well one ounce, but not significant.)

I was pretty bummed out this morning at the doctor to see that Clara hasn't put on weight like we'd hoped.  She seems so happy and healthy and to be doing so well, but a baby's gotta gain and she hasn't.  Alas.

Since she hadn't lost weight either, the doctor is going to give us another week or so.  I'm going to try to increase feedings to 9-10 times in a 24 hour period (that's a heck of a lot, in case you were wondering) and see if we can get some extra calories in her that way.  We're also going to keep trying to push the bottle in hopes that we can add some formula to breast milk and get some more calories in that way, if Clara will cooperate.

We're still going to the mountains.  I'm hoping that the time away will help us all relax and give us the time and space to focus on feeding, feeding, feeding 'round the clock.  I have to say that I'm a little discouraged about this whole thing.  I feel such a strong maternal instinct of wanting to provide for my baby and not feeling like I'm doing it adequately is very difficult.  There is a deep sense of failure, rational or not, that I'm just struggling to shake.  It's tough to make a baby eat who's not in the mood to eat though.  And it's a tricky balance of following Clara's lead and trying to do what she wants and also watching the clock enough to realize that if three hours have passed and she hasn't eaten, she really needs to - like it or not.    So, despite my sadness and frustration and general discouragement, I'm trying to remember that I have so much to be thankful for:

* I'm thankful that the battles we're fighting now are as simple as an additional six or eight ounces of breastmilk a day in an otherwise happy, healthy baby.
* I'm thankful to be fighting this battle at home, in our own space, and on our own turf and not within the four walls of Brenner Children's Hospital.
* I'm thankful for the continued support and love of family and friends who help talk me off the cliff and wipe my tears away.
* I'm thankful for an incredible pediatrician who spoke to me with grace and compassion today, despite my obvious disappointment.  I'm thankful that after offering all the suggestions that he could think of, he stopped, laid his hands on Clara, and prayed for her, knowing that God is the one in whose hands she rests.
* I'm thankful that Clara has a sweet and happy disposition and that she is fun to be around all day long.
* I'm thankful that caffeine doesn't seem to affect Clara at all, 'cause I'm consuming a lot of it.
* I'm thankful that we live in a day in age where there are lots of "options" for feeding babies... dozens of different bottles (we're trying them all), lots of formula options for extra calories, and diligent medical care that will be sure that Clara gets what she needs - even if it means putting the NG tube back in.
* And most of all, I'm thankful for Clara's life and that we get to struggle with a fairly ordinary problem.  This is serious, for sure, but it's not anywhere near as critical as some of the other obstacles that she has already overcome, by God's grace.  So, we'll pray and trust that in God's timing, she'll overcome this one too.

Keep praying for fat rolls.  (Sure wish I could just share mine with her!)

Happy Birthday, Wendi!

My freshman year at Wake Forest I took a French class that was required as a part of the foreign language divisional.  Despite having had thirteen years of French before showing up at Wake Forest, my skills were clearly lacking since the placement test put me in the “beginner” class.  I could never have known that being placed in that class was one of the greatest blessings I’d ever know.  I met Wendi through that first class in the fall of our freshman year and thus began a friendship that has now lasted twelve years and is going strong.  We have been through A LOT together.  She’s seen me through heartbreak and love, through sickness, through broken friendships, spiritual doubt, deepened faith and a whole lot more.  We have lived together and traveled together and crafted together and celebrated countless birthdays and occasions.  We’ve cooked meals in dozens of our kitchens and taken road trips to the beach and Georgia and beyond.  We’ve shared our history and our lives in a way that makes me feel like she’s never not known my heart as well as anyone could.  She has held me while I cry, prayed for me when I couldn’t find the words and encouraged me to chase my dreams.  Wendi is one of the most selfless people I’ve ever met.  She loves and gives and serves others far beyond what is expected from the call of friendship.  Wendi is truly the best friend anyone could ever ask for.  I’m so thankful she’s mine.

I would never have imagined twelve years ago that a day like today would have happened.  Wendi now has a baby girl born just a week apart from Clara.  It wasn’t planned like that, but it sure was special to share our pregnancies together and to dream about what it would be like to raise these two sweet babies alongside each other.  There were days in the hospital when I thought that dream would not come true.  But today, it played out more beautifully than I could ever have imagined.  Wendi, Chloe, Clara and I all took a walk together this morning, zig zagging through the streets of Wendi’s neighborhood and talking about life, mothering, how tired midnight feedings make us, and the other idiosyncrasies of being a new parent.  After we finished walking, the two of us sat on her couch together and nursed those baby girls side by side.  Then all four of us piled in the cars and went out for lunch together.  I am so very excited that somehow God has planned for Wendi and me to share this chapter of our lives together too.  What a gift.

Today Wendi turned thirty!  It’s an important milestone and I’m glad I got a chance to celebrate with her a little.  Pushing strollers and nursing babies is a far cry from some of the birthdays we’ve celebrated in the past, but I’m so thankful for life right now and the beautiful picture that it is.  Happy Birthday, Wendi!  You’re a wonderful mother, a beautiful child of God and an amazing friend.  I’m glad you were born.

Here's a photo walk of just some of the good times we've shared (post-digital-camera era.... I didn't dig out and scan the ones on film.)

Wake Forest Days

Students at a football game...

Our senior year

One of any number of birthday celebrations at Mama Davis'

Somebody's birthday at my first apartment post-college

Shenanigans

Wendi visits camp where Robert and I met to scope him out and see if she approved... (she did)

Happy New Year!  We've rung in most of the past 12 together

A Christmas party, I think...

Homecoming as alumns

Wendi's wedding

My wedding

Oregon, Summer 2009

Pregnant together!

Lunch today, with our precious baby girls

Chloe

Tickled Pink

It's been a busy Monday of doctors' appointments, but we have more good news to report.  This morning we met with the cardiologist and had an echo done to evaluate the state of Clara's pulmonary hypertension.  The drug sildenafil that Clara came home on is to treat pulmonary hypertension and we were told to expect her to stay on this medication for many months since most of these babies still battle varying degrees of pulmonary hypertension for quite some time.  Last week when we pulled out the NG tube and had to begin giving this medication orally I had a small panic attack.  Clara was spitting it out and we were having a horrible time trying to get it in her.  I called cardiology in a tizzy last Thursday, begging to drop one of the three doses and asking about the repercussions of her missing the doses that she either spit up or threw up.  They told us just to do our best over the weekend and we'd re-evaluate on Monday at the appointment.  Today, we were so pleased to hear that her echo looked completely normal.  [SIDENOTE: It was so fun to see some of the sonographers we loved and saw every day for awhile when Clara was so very sick.  One of them scooped her up today and started parading her around the office saying to anyone who would listen, "This right here is a MIRACLE baby!  Look at this baby who lived because of love and prayers!  Let me show you this incredible miracle I'm holding...."  So precious.]  The damage that her right heart sustained while on ECMO when she began to have right-sided heart failure has completely healed and reversed itself.  They said that her heart looked totally normal and healthy and that they could not even see any indicators of pulmonary hypertension any more.  Soooooooooo.... we get to stop taking sildenafil!  And we don't follow up with cardiology again for another six months.  This was better news than we could even have allowed ourselves to imagine!  Clara is especially relieved that her dad doesn't have to force that stuff down her throat any more. (Her daddy is pretty relieved, too).  Goodbye and good riddance, pulmonary hypertension!

After that appointment, we went back to the 6th floor and paid a quick visit to some of our friends in the NICU and PICU.  It was absolutely surreal to get off those elevators and walk those corridors like we did so many times for eleven weeks, but to be pushing Clara in her stroller and be on the outside with her.  It was really indescribable.  It was good for our hearts and souls to see a few of the people who we came to love so dearly during our time at Brenner.  While we don't miss anything about being in the hospital, we do miss the people.  They were like family to us and loved us so well.  It was good to see some of them again.

We had about an hour and half before our appointment with Dr. Turner, and not really enough time to go home, so we went and got some lunch.  Mom and I decided to go to Cagney's, the diner around the corner where we used to eat lunch a couple of times a week while Clara was in the hospital.  It was another surreal moment to be sitting in that restaurant, drinking the same sweet tea and eating the same fried okra with Clara in the booth beside us, snoozing away.   We had so many conversations in those same seats about medications and numbers and doctors and prognoses and diagnoses.  And there we were, with Clara, just soaking her up and praising God for bringing us to this point.  There were many days we sat in a booth there and would never have thought today would have come.  It did.  Boy, did it feel good.

We headed back to The Baptist to see Dr. Turner this afternoon.  He was also very pleased with how she's doing.  He said from listening to her breathe and by looking at her last chest x-ray (which was in May) that he could not tell that she had ever had a diaphragmatic hernia.  He said her left lung is now full size (or close to it) and that she's doing just great.  He gave us warning signs of some of the complications that may crop up in the future and things to be on the lookout for, but sent us on our way with another follow up in three months.  Goodbye and good riddance, hypoplastic left lung!

The scales all differ, so it's hard to say exactly how much weight Clara has gained since pulling the NG tube last Wednesday, but our guess is at least a couple of ounces, maybe as much as four or five.  We pray for continued weight gain, lots of good eating, and some deep and restorative rest in between.  Clara has been spitting up/throwing up a decent bit the last week or so, as many babies do, so we pray that this is not enough to cause her to stop gaining weight and doesn't require further treatment. 

It's hard to believe that she is on no medication now besides the Vitamin D that all breastfeeding babies take.  She has no oxygen.  She has no feeding tube.  She is in great health and continues to amaze and surprise the entire medical community.  Tomorrow she has physical therapy and we'll visit the pediatrician again on Thursday for an official weight check.  Then, on Friday, we're heading to Beech Mountain for our first overnight to celebrate the Fourth of July with family.   

In addition to the near out-of-body experiences of walking down the 6th floor hallway and eating lunch at Cagneys today, I had a third rush of emotion tonight as I nursed Clara before putting her to bed.  I held her in the glider, in her room, clean and warm from her bath and smelling faintly of the baby lotion we'd coated her down with, just breathing in her very essence.  We rocked, she ate and snoozed, and I prayed through tears a prayer of tremendous thanksgiving and gratitude.  I will never understand exactly why Clara was born with this diaphragmatic hernia.  Even less though, do I understand God's grace and mercy for us and the enormity of the miracles He has performed and continues to perform.  I just can't believe how blessed we are and what an incredible treasure this sweet baby is.   There aren't enough words to express how full my heart is and how thankful I am to our Lord for his never-ending mercies.  Suffice it to say, that today's reports have left us tickled pink.

Thanks Be To God.