"Beautiful Lungs"

More birthday photos will be coming soon, I promise.  But for now.....


We went back to Brenner today for Clara's one year surgical follow up.  Started off with a chest x-ray.  She was not quite as cooperative this time as she was six months ago.

The techs were super fast though and the good news is, once those x-rays were taken, we went to visit Dr. Turner for a follow up.  (After a quick stop by the NICU to check in on our old favorites.... it's always so good for our soul to see the folks who loved and cared for Clara so well those first 78 days.  We will be forever indebted to them!  Their faces lit up at the sight of her waddling around and babbling to them with her ever-present grin.  I think it was as good for their spirits as it was for ours.)

Just for fun, we did a little before/after look.  Here is Clara's chest x-ray from 3/23/11.... all those abdominal organs are up in her chest where her left lung should be and her heart is pushed over in the space where her right lung should be.  It's a garbled mess:

Here is Clara's chest x-ray from today:

Her left lung has totally filled the space in her ribcage (that's the one that was once described as nothing but a "nubbin'").  Dr. Turner said it looked complete, as full as a healthy child's lung would be.  Can't express how it does our hearts good to hear phrases like, "those are beautiful lungs," "her x-ray was perfect," "it couldn't be any better," and "everything looks great."   Her heart has shifted back to its correct location as well.  Other than a teeny bit of scarring on her right lung from her pneumothorax (no problem or concern there though), her lungs look just fabulous.  They sound good too, although we won't know much about their functional capacity for a few years.   The good news is that she will continue to grow alveoli until she's about eight years old.
 

We didn't get a picture with Dr. Petty today, but he came to Clara's party on Saturday so here he  is (left) with her then!  Dr. Turner and Clara are on the right, today. 

We will continue to have chest x-rays yearly until Clara is five or six and as long as there is no recurrence of the hernia (always a possibility since a patch was used to repair her hole), we will go to every 2-3 years at that point until she's done growing.

We didn't suspect any problems, but it's a great relief to have that confirmed in a film for us today and to hear the positive affirmation of how well Clara is doing from the folks who helped get us here.

She was pretty tuckered out after a big morning at Brenner.  I snuggled her a little extra tight during her nap this afternoon.  We're proud of you, Clara.  Well done, baby girl.

Nine Months - Medical Update

Now that the holidays are behind us, our appointment schedule is picking back up again.  Clara had physical therapy yesterday and her nine month check up this morning.   Clara seemed to have a little growth spurt the week before Christmas and the combination of that along with lots of attention during our week at Beech Mountain seems to have translated into a huge burst of gross motor development.  She has not only fully mastered crawling, but is pulling up on any and every thing in sight.  She’s cruising along furniture, standing with just one hand and reaching in all directions, going from standing to sitting with great control and even standing completely on her own for a second or two.  Her core strength, control and coordination have just improved dramatically.

I knew that Cindy (our PT) would be surprised at all of Clara’s progress in such a short time.  She was thrilled!  It’s been six months since we started PT now and so she re-administered the AIMS (Alberta Infant Motor Scale) assessment to determine where Clara is with her gross motor skills at this point.  No surprise, she’s at 50th percentile for her age!  Anything above 10th percentile would have been considered great, but we’re so thrilled that she is where she is.  We’re mighty proud of this hard worker.  So, she no longer has a developmental delay and no longer has torticollis.  We still want to increase her core strength and her neck some, but she will likely be exited from PT very soon!

This morning we went for our monthly synegis shot (RSV vaccine) and her nine month checkup.  She weighed in at 18 pounds, up 12 ounces in a month.  That’s the 36th percentile for weight, and about where Clara has been the past couple of months.  Her length is 28 inches (67th percentile) and head is 18cm (91st percentile).  The doctor was very pleased with this growth.  I know that the continued weight gain (albeit with enormous effort on my part) is a big part of the gross motor success, too.  They’re certainly closely related.  But it’s motivating to keep working hard on both feeding and her core strength exercises when we have such a positive office visit.

We have been feeding Clara during the night some (once at 11PM before we go to bed and once in the early morning before she wakes up).  I just dropped the early morning feed last week and the doctor has told us to go ahead and try dropping the night time feed, too.  Hopefully Clara will eat/drink enough the rest of the day to make up for those feedings and we’ll all get a little more sleep at night!  Most of all, the doctor was incredibly affirming of the hard work that we’ve put into both feeding and protecting Clara from germs during the winter thus far.  She and I will both be relieved when March rolls around and we’re through the cold and flu season and Clara is also old enough to begin transitioning away from breast milk.

We head back to feeding therapy on Monday.  I’m pleased with our progress there, too.  I hope the speech pathologist will agree!

Thanks for your continued prayers for Clara’s health and growth and for being concerned about her development.  We’re thankful for you!

Back to Brenner (But just to visit)

Clara had her six month follow up with surgery today (the first of several appointments this week), so we were back at the hospital and after meeting with Dr. Turner, we headed back to the NICU/PICU to see some of our other old buddies.  I have to say, I've just been replaying the morning over and over again in my head all day today.  It's such a testament of how far we've come and I just can't stop thinking about all the people who helped get us here and who we came to truly love along the way.  I trust and respect their opinions so deeply, so it meant a lot to hear them all 'ooh' and 'ahh' and say how great Clara looks and how well she's doing.  In a strange way, I kind of miss sitting in on rounds, sharing what I think has happened and how she's doing and where we might go from here.  I don't miss the sickness or the fear or the worry, but I kind of miss this family of people who loved Clara (and us) like their own and whose commitment to quality care is one of the big reasons she's thriving today.  Dr. Petty said today, "Clara is really the exception, not the rule.  It's so great to see a baby who didn't just survive, but is truly thriving."  We're reminded of how incredibly miraculous her recovery was.  Part of our hearts belong to these people, and they always will.

Here are the two men who deserve most of the credit for saving Clara's life.  Dr. Petty put Clara on ECMO in the wee hours of the morning on her second day of life and was her primary surgeon who followed her (and carried us) through her 78 days at Brenner.  He's the one who had to break the news to us that he didn't expect her to live and he's the first to give credit where it's really due - even today he said, "This one was all God."  Dr. Turner did Clara's repair surgery and also took her off of ECMO and for those two big days he will always hold a special place in our hearts.  He's been performing surgery on babies for decades and we're so thankful for his expertise, his wisdom, and the care and compassion (and sense of humor) with which he handled us during those days.  Our hearts always swelled with hope and comfort whenever we saw Dr. Turner coming.  These two men rock our worlds.

Clara and Dr. Petty

Clara and Dr. Turner

 Remember Dave?  He believed in Clara when nobody else did.  He pushed the physicians to "cap her off" on ECMO before they really thought she was ready.  Even on really, really tough days he insisted that Clara was going to be fine.  He was so optimistic and filled us with hope because he never gave up.   We hadn't seen Dave in a long time and boy was it good to hug his neck again.

Dave, respiratory therapist

 And remember Scott? He's in charge of ECMO (along with his sidekick, Barney, who wasn't there today because he was up all night on backup for some late-night heart surgery. These. people. work. hard.) and he really loved Clara.  I'll never forget the way he looked at her while she was on ECMO and called her "little lady."  His gentle spirit gave us a sense of calm in the midst of the storm.  He's another one we hadn't seen in many months and it was great to catch up a little....

Chrissy, Clara and Scott

Of course, there's Crystal.  When we buzzed the bell at the unit, she's the one who greeted us saying, "They said that Clara was here and I said, 'MY CLARA?!'"  Yep.  She's yours, Crystal.  Love you.

Clara grabbin' Crystal's lip. (That's love).

So, after our surgery appointment, and visiting in the PICU, we headed back to the NICU.  Dr. Yang was the attending who cared for Clara longer than any other attending while we were in the NICU.  We will forever be grateful that she was on call for so many days during our stay because she was the perfect fit for Clara and our family.  I have so much respect for how Dr. Yang practices medicine.  She's a brilliant woman, and she really knows her stuff, but she looks at the baby more than any other doctor I've ever known.  She never just relied on a report from a resident during rounds. She always wanted to see and touch Clara for herself, and she did - many times every day.  She was willing to push Clara when she thought she could handle it, but was quick to back off if Clara said, "enough!"  (I remember one day when we were trying to wean sedative and painkiller and I was so eager to get it off, but Clara was showing withdrawal symptoms and Dr. Yang quickly adjusted her doses, not wanting Clara to be uncomfortable or in any pain.)  She is a phenomenal problem solver, always turning things over in her head over and over again until she's sure of a solution.  Perhaps most of all, she believed in Clara.  She's the one who let us give breastfeeding exclusively a trial run in the hospital, when that's not how they usually roll.  She's the one who said, "Don't put a G-tube in!  She can do it!"  She's the one who knew that our family was going to do anything in the world we could to help Clara be the best she could be.  And she often affirmed our long days and nights in the hospital by saying that our time, love and attention were part of what was helping Clara defy the odds to heal so well.  On our previous return visits to the NICU, Dr. Yang had not been there.  So it did our hearts a lot of good today to see her and to let her love on a big healthy Clara.  Because I trust and respect her so much, it meant a lot to hear her say how well she thought Clara was doing.  I hope we'll stay in touch for many years and that she can watch Clara continue to grow and thrive.  We love you, Dr. Yang!

Dr.  Yang!

Dr. Yang and Erica (who always had a smile and a positive word of encouragement for us, too!)

We also got to see Tara today.  Not sure how we missed getting a photo with her!  Tara had her own miracle baby just two months after Clara was born.  She went to Boston and delivered a beautiful baby girl with a heart condition requiring immediate surgery.  Georgia is thriving just as much as Clara these days!  Her unique perspective was always reassuring to us.  Can't wait for those two girls to meet someday.

Of course, there were other people who we loved a lot and miss as much as these folks, but didn't get to see today.  We saw Martha (the lactation consultant who was committed to helping Clara and me both learn how to nurse) and Wanda (the CNA who loved us like her own) on our last visit though.

Martha and Wanda with Clara

So, in case I haven't made it clear: it did our hearts good to see these folks. So, so good.

Clara did have to get a chest x-ray before we left the hospital.  By this point, it was nearly an hour and a half past her afternoon nap time and she was such an incredible trooper to still be hanging in there.  She was tired and hungry, but still let the x-ray tech strap her into this contraption for a few quick x-rays.  She was within her right to scream and cry, and if she had, this would have been pitiful.  Since she was instead looking at us like, "what the heck is going on here?!" it was just hilarious.  Poor baby!

x-ray contraption!

It was great to be back at Brenner. And to all you other folks who we love and miss, but didn't get to see today, I surely hope we'll see you next time!

(By the way, Clara weighed 14 pounds, 11 ounces today, another 13 ounce gain in the past 13 days!  The official report from the surgeons today was that Clara is doing great!  We're to continue helping her gain weight and try desperately to protect her from germs and exposure during the upcoming cold and flu season.  But as long as there are no issues, there are no issues.  She's doing fantastic.)