Slight bump…everyone is okay

Finished the blog last night, got ready for bed…then doctors started hovering over Katie…oh great!!!  They called for a chest X-ray and as expected her lung was collapsing again.  Thankfully, this time the partial collapse didn’t warrant her being re-intubated.  Instead they just put her on a little nasal feed that supplied her with room air-  a little jolt to help her along.  The bigger problem was that she was taking 80 breaths per minute (they wanted her around 30-40).  Blood pressure- good.  Oxygen saturation- good.  Pulse- good.  Katie just didn’t want to breathe at a normal pace…another day, another adventure. 

After a night of close watching, Katie had a phenomenal day today.  Vickie and I held her all morning and Nana and Granda (my mom and dad) got to hold her for the first time this afternoon, along with Baba (Vickie’s mom) who had held her prior to the past week’s drama…or is it trauma…hmmm.

All of the doctors were extremely satisfied with Katie’s progression this morning at rounds.  She is developing as well as could be expected. What’s more, she had another bunch of tubes removed tonight…she is getting cuter and cuter with the removal of every tube. 

The even better news is that last night I REALLY acted like a dad.  After sitting pensively with Vickie while they X-rayed Katie, we were both relieved to hear that a minor modification would rectify the situation, so off to bed we went.  I woke up this morning to learn that Katie cried all night and that Vickie got about 1.5 hours sleep….oops.  I didn’t hear a thing.  I feel really guilty-  I want to help- I love helping.  Tonight, I am going to stand watch, and I have a promise from my very tired wife that should Katie stir, Daddy is on duty (that is an easy promise when nurses still change diapers!).

Overall, today was another spectacular day.  Vickie and I remain pensive thanks to Katie’s late night antics, but she is really beginning to blossom.  The urge to snatch her up from the bed is here in full force…I have no time for you tonight- I have to go dote over my daughter.  Keep praying, and keep smiling.

(Picture- “gangsta Munchkin”…this was Katie in my arms this morning.  I was having fun playing dress up!  The hat was given to Katie by Uncle Bill.  It reads “Our Incredible Hulk.”  Thankfully, the hat is way too big and Katie did not inherit my oversized cranium!  Small mercies)

 

A Picture is worth a thousand words

Is this a trend?

Look at this picture!  Look!  This is Mommy, Daddy, and Katie today. Little Munchkin is breathing on her own…what a miracle.  Tonight Mom even started to feed her with a bottle and Katie took to it (that is very unusual for post-op HLHS kids).  Vickie and I are trying to do everything we can to contain ourselves and keep perspective that there will continue to be bumps in the road.  It is so wonderful to have Katie breathing on her own, hearing her hiccup (multiple times today), crying, and whining repeatedly!  Now this feels like May 20th. 

After speaking to doctors this evening it would appear that getting Katie to feed regularly will be the next major hurdle…I can’t…don’t need to write anymore-  look at the picture- look at our faces…enough said!

I found a quote today that said that “happiness was a form of courage.”  I think that must be true b/c both Vickie and I are scared at the positive emotions we are currently feeling…we know there is another “corkscrew in the rollercoaster” but right now, we are on top of the world!  Thank God for our precious Munchkin!   Please keep up the prayers.  I have to “go see about a girl” (Robin Williams in Good Will Hunting).

The Dust is Settling…for now

One of the men in the pictures above is world renowned…one is hilarious! Actually, Dr. Shinoka (the one in the white for the impaired) is both!  While the picture of Katie with one of the doctors that is saving her life means the world to us (he asked to be in the picture by the way! funny guy!), Mickey Mouse saved me a lot of money on a trip to Disney.  Katie has now met Mickie & Minnie Mouse…anywhere we can save a few dollars!

Katie had a GREAT day today, because very little happened.  She slept, ate, pooped…repeat!  It felt like we had the little girl we expected a just over a week ago.  It is bizarre to think that we now deem today as “normal”- she is intubated (sorry for the typos in prior posts), connected to multiple gadgets, and she is receiving breast milk through a tube.  Normal.  We expect tomorrow to be a very important day…Katie rested hard today so that she could be extubated again tomorrow (hopefully). 

As Vickie and I sat at dinner tonight we became overwhelmed by the thought that we arrived at Yale one week ago today.  Our world was so different then.  Our thoughts, priorities, hopes…all changed, not gone, just changed.

To be honest, as the dust settles (Katie has had two very good days and one very good night- everyone knock on wood) my emotions are shifting…anger is the over-arching emotion of the evening.  It’s strange.  Sitting with Katie is so peaceful, so relaxing, so right.  Then we leave the room and all I can feel is anger-  there are so many people not using what they were given.  There are so many people CHOOSING to underachieve…Katie is dramatically overachieving just to breath.  Does that seem fair to anyone? As Katie learns to deal with this arduous journey (b/c you are never really free of HLHS), I know she will go above and beyond.  She has Rebel blood (that is Cork for all you Yankees), she has the blood of a family that survived the camps in Germany during World War 2.  I don’t doubt that she can persevere-  I am just angry that she had to be tested and restricted so early. 

Please understand that this anger is fleeting- I know that.  It would be unnatural not to feel some frustration though.  I am not looking to blame or find reason in this- I am just a very angry father who is sitting next to his daugher’s bed on the 10th day of her life- 8 of which have been connected to life supporting machines.

Paula Abdul has been ousted!

Tonight I decided to serenade Katie with some songs, but since I can’t remember all the words to hardly any songs without the music (Vickie gets very annoyed when I make up words to songs), I put one headphone in my ear and off I went.  As I sang all of my favorite songs from my MP3 player (David Gray, Jack Johnson, Damien Rice, U2 etc.) I started to sing a song I have listened to hundreds of times…this time was different; this time it touched me…

“Don’t be hiding in sorrow
Or clinging to the past
With your beauty so precious
And the season so fast
No matter how cold the horizon appears
Or how far the first night
When I held you near
You gotta rise from these ashes
Like a bird of flame
Step out of the shadow
We’ve gotta go where we can shine“

-Shine by David Gray.

Katie has had a peaceful day.  All tests have been positive.  She had a tube put into the side of her chest (they call it a pig tail…nice!) to drain excess fluid after the surgery.  It’s sad when a minor surgical procedure like that doesn’t even phase you.  All current courses of action seem to be building positively toward a more successful extibation in the near future.  Hopefully, we’ll have a quieter night than last and we can avoid that awful Paula Abdul ditty tomorrow!

(Picture- May 19th…what a different perspective we had that evening)

Paula Abdul: lyrical genius

“two steps forward…one step back”-  Katie is back on the ventalator.  While sleeping in her room last night, Vickie and I were awoken by doctors who informed us that “Ms. I Do Things In My Time” was not adjusting well w/out the air support and that her lungs were collapsing.  So while all of the strides that were made yesterday still remain just as extraordinary as we first thought, our positivity has been tempered. 

The doctors said that going back to the vent was not uncommon…the reason she had to return to the support was one of four things-  her heart could be leaking (the worst) to she was too tired and hungry b/c of the day she had had (the best).  We’ll have a better sense by the end of the day and after the battery of tests she is undergoing. 

We haven’t lost hope- the wind has just died down a little so the smooth sailing has been restricted.

(picture- the 3 of us yesterday, Tuesday, enjoying a rare moment of Munchkin holding…she is covered up to protect the innocent)

PS-  We have received many kind words about Vickie and my ”strength during this process”…thank you, but don’t be fooled.  Unexpectedly, this blog is my outlet.  I don’t think I’ve every been so quiet, so lost for words, so introverted.  We are doing our best to stay strong for Katie…but our positivity and occasional levity is heightened as we write.

funny moments…

I forgot to mention the very funny yet very apt summary of Katie’s condition that we received from her cardiologist yesterday.  While educating us on future children we may have and the likelihood of them developing a congenital heart defect the doc said- “it could just be a simple hole in the heart.”  He was being serious.  He was trying to be reassuring.  He crystalized the severity of Katie’s condition!  I laughed out loud b/c of the surrealness of the situation-  he looked at me as though I were slightly odd…we were both right.

Funny story number 2-  tonight I became the progressive man…I found myself walking thru the PICU (pediatric Intensive Care Unit) rolling a yellow symphony, bidding others a good evening as I went.  The yellow symphony is an industrial grade breast pump….”how youuuuuuuuu doin’?”

PS- Katie is having a great night so far!

Extraordinary

Anyone that has had to sit in a training session with me at work has heard me use the word extraordinary.  I have a difficult time connecting with people that settle for ordinary- people that settle for good enough instead of maximizing their time on this earth frustrate me.  I want to put my best effort forward at everything I do…not by solving world hunger or saving lives, but just by giving things my all. 

Today I was overwhelmed by the extraordinary people that I was with. 

#1-my wife.  A new mother that gave birth one short week ago, Vickie has been immense in her reaction to Katie’s condition.  Like everything else that Vickie touches, she makes it better.  Granted, Vickie cannot take HLHS away from Katie (even though I know she’d love to), but to watch Vickie care for her daughter, support her husband, and guide her family is staggering. Vickie doesn’t do extraordinary tasks, she IS extraordinary.  Dan McCabe described Vickie best-  “Clutch.”  She doesn’t brag, she doesn’t look for reward, she just does…

#2-my daughter.  C’mon- she is a powerhouse.  Today, Katie was removed from the ventilator, had one of her chest tubes removed, and was taken off of one of the main IV’s that had helped save her life…extraordinary enough for you?  That was a couple of short days after major surgery, and endless examination.  Like mother, like daughter.  Katie had a rough day- her pain was visible.  She was frustrated and bothered by all of the bells and whistles that are currently keeping her alive.

#3- the staff at Yale.  They simply care.  Our nurse today said that she had to “change Katie’s sheets”  so we would need to hold her for a minute.  Two hours later Vickie and I traded off holding our Munchkin.  This may not seem like a lot to some people, but to us, both the act of the nurse and the feeling to hold our Katie was extraordinary.  The real beauty was to realize that extraordinary is not the view of the exotic beach, but the person you are sitting next to while enjoying it.  Extraordinary is not hitting the winning shot, but being able to share the success with family and friends.  Today I learned that extraordinary is attainable…it is attainable b/c of #4

#4 All of you have been amazing.  People who we don’t know are praying not just for Katie, but for Vickie and I (please…give all of the prayers to Munchkin).  From morning til night we are surrounded by our loving family.  They are making an unbearable time seem less unbearable.  Nobody would want to choose our current reality, but the true saving grace is knowing that we are not walking this walk alone.  The commitment of our family is humbling- we love you all.

Holding Katie today gave me enough energy to last a lifetime!!!!  We WILL beat this…she will beat this.  She is EXTRAORDINARY.

 

Happy Kinda Sorta Birthday

Update- Katie is still progressing nicely!  It would be another major hurdle overcome if she could successfully breath without the ventilator tomorrow. We’ll see. 

Confession #1- I’ve become “that guy.”  I have never been big on over-celebrating an infant’s birthday.  While a joyous and noteworthy event, to spoil a little one who’ll have no memory of the events seems somewhat odd.  Even worse, I often find myself rolling my eyes at the people that say “I celebrate every birthday, half birthday, quarter birthday…” and so on.  However, after the week that Katie has triumphantly survived, I think it is fair to honor the occasion, celebrate the accomplishment, and appreciate the time spent.  To that end, Vickie and I went to the store today to buy Katie some musical rattles, a CD to drown out the “chitty-chitty-bang-bang” of the intensive care unit, and a beautiful outfit for Katie to come home in…that’s right, to come home in…it felt GREAT! (we leave the hospital for 2 hours in the afternoon to shower while the grandparents smooch little Katherine).

Confession #2- while Vickie and I remain vigilant and cautiously optimistic about Katie’s development (as illustrated by the purchase of the going home outfit), we are obviously distressed by the struggles she has had to endure in one short week.  In our typical nature, we’ve been researching aggressively and trying to learn as much as we can about this relatively new care for HLHS.  That being said, last night we had to come to terms with some harsh realities and potentially limiting factors Katie may face.  Obviously, it angers us to have our Munchkin have a glass ceiling placed on her so early on in life.  We are frustrated by our inability to help, to fix the booboo if you will.  In short, we hit a self imposed dip last night (like we need to impose one on ourselves)…it was necessary to learn more about the struggle Katie will face, but the sobering information left us jaded and weakened as we went to bed.  Waking up this morning our disposition didn’t bounce back too quickly…not until we met with Dr. Asnes (Katie’s cardiologist).  He sat with us for an hour this morning as I inundated him with questions I had written down while doing my research.  He honestly and comprehensively answered every question and while he never said “she’ll never have a problem” or “everything will be smooth sailing”, his perfect balance of insight and optimism rejuvenated Katie’s tired parents.  We know it is difficult for family members to find the right words right now…it is difficult for anyone to find the right words, but somehow, Dr. Asnes found a way.

Final Thought (Jerry Springer style)- I tried to save my quote for as long as possible, but after a handful of blogs I think it is necessary.  I have lived by the Aldous Huxley quote that “experience isn’t what happens to you, it is what you do with what happens to you”.  While I haven’t fully figured out what I will do with this learning, I do know that I am embracing every moment, every toe wiggle, every nose twitch, and every bowel movement (yah- weird, I know) that Katie is having.  So I have accomplished the micro learning.  Somehow I think the macro take home message will take a while to fully understand…for all of us. 

(Picture- fairly obvious- this is the Manning trio together for the first time…Monday May 19, 2008!)

a-maaaazing!

ok…ok…it is well understood that this has been a week we’d rather not relive.  However, in the midst of the incredible drama, there has been one constant positive.  The medical attention that Katie has received has been nothing short of spectacular.  Every doctor, nurse, and even receptionist has acted with professionalism, accuracy, but most of all, compassion.  Yale New Haven hospital is the 2nd miracle of this process (Katie is obviosuly the first).  Nothing more to say right now…just a big thank you to the medical staff.  For those of you following the adventures of Katie Manning, please pray for the angels that have protected our Munchkin-  incredible.

Oh, that Katie girl…she is progressing perfectly!  I will give a full update later today but just know that she is doing everything right-  if we keep going like this, she will come off of the ventilator tomorrow…keep on praying.