We’re Home

Notice Katie's toy...no pressure! (this was the morning of the cath)

It was a long, tiring, and frustrating day, but all ended well.  Katie had another echo this morning that confirmed that there was no serious damage caused by the tear in her aorta yesterday.  Dr. Asnes was satisfied with how she was doing and was all set to send us home.  He had one last examination, and yet again, Katie had to introduce some drama.  The pulse in her right leg was significantly different from the pulse in her left.  Fearing a clot or some other side effect of the cath, an ultrasound was ordered.  That was at around noon.   We were already antsy.  At about 2pm a lady came strolling in to perform the ultrasound.  She informed us that she had a handful more to do after us and that once they were all done she’d return to the lab to have the radiologist review the information.  At just after 4pm we got word that there was nothing to worry about and that we could go home…finally.  We left the hospital just before 5pm.

After a day of sitting, doing nothing, we left the hospital weary and grumpy (sorry to anyone I talked to around that time-  I was less than pleasant).  Strangely, we walked through the door at home and our dispositions changed immediately.  We were relieved and excited to continue living normally. 

Before we left the hospital we spent some time chatting with Dr. Asnes.  After the dust settled on a dramatic Tuesday, we were able to enjoy a more balanced conversation about what lay ahead.  It seems most likely that we will return for the angioplasty at the end of August and proceed with the 2nd Surgery in mid September. Of course this is possible (and in our case likely) to shift depending on what happens in the coming weeks.  The meeting with the surgeons this Friday may even impact this schedule so stay tuned. 

The best news of the day-  After over two months of keeping our head down and only working on getting things better I really wanted to know how Asnes thought the process was going overall.  How was Katie doing against the plan or hopes that he had.  The answer-  GREAT!  She recovered from the 1st surgery in a very short time and has grown dramatically since discharge.  Before yesterday’s hiccup (which Asnes was visibly disappointed and frustrated by) and after today’s clearance, Katie is on track toward a positive outcome to this saga.  There are many challenges yet to come, but we can only take on what is in front of us and so far we are doing just fine.

On a related note, Dr. Asnes is amazing.  Yes, he was “responsible” for yesterday’s mistake but he has been everything we could have hoped for from Katie’s doctor.  He is incredibly knowledgeable, welcoming, caring and most of all committed to Katie’s success.  You can say what you like about Doctors or hospitals, but this man is a genuine man who cares about his profession and cares about his patients.  We are very lucky!  Please pray that his judgments remain sound (and the surgeon’s hand steady).

Now it’s time for an early night…back to work tomorrow.

shocker

My Ladies (taken Sunday before our visit to the hospital)

Did anyone really think that today would go smoothly?  We got to the hospital last evening, settled in, and enjoyed a nice evening with a very chatty and playful Katie.  Katie even engaged every nurse and nurses aid in her constant babble…quite the social butterfly. As the night turned into morning, playful Katie yet again turned into evil incarnate.  To be fair, Katie had to stop eating 6 hours before her procedure, so by mid morning she was unconsolable.  It was rough and rather ironic.  If you think back to little over a month ago the goal of the game was getting petite Katie to eat with regularity.  Now we had to stop Munchkin from what she does best, eating.  Until they came to get her for her procedure Katie was NOT happy.  However, as soon as they started to roll her to the Cath lab, little Miss Inquisitive came back.  She was looking around, smiling, and she suddenly forgot about the hunger she was feeling.  That was around 11:30am.

At 4PM or so Vickie and I got the call to come meet with the doctors.  Although Vickie took the call, I just knew in my gut that all had not gone smoothly.  We met with Dr. Asnes and Dr. Fahey and learned that the concerns that they had for Katie were supported by the Cath-   I think, no big deal.  They go on to inform us about the narrowing of her aorta and how it is found in 30% of HLHS patients- I still think, no big deal.  Then he says that they went to perform the angioplasty- and still I was thinking, no big deal.  Then he said “but”…all of a sudden I knew there was a deal of some sort.  While trying to snake the cath into her aorta to inflate the balloon, they broke through her aorta wall.  The curvature in Katie’s aorta was so significant that the catheter couldn’t navigate the turn causing a slight rupture in her passage. Let the games begin!!!

So here we are tonight, back in the ICU.  While the accident didn’t create any grave consequences it has certainly muddied the waters.  An echo late this evening showed that the tear was not too significant and wasn’t causing extensive problems.  What the cath and the tear has done is call into question the long term functionality of Katie’s aorta as it is currently constructed.  We will either need to redo the cath in 2 weeks and perform an angioplasty, or go ahead with the 2nd surgery in 3 weeks or so.  Each option has its pros and cons.  The cardiology team is meeting with the surgical team this Friday to determine the path we will take.

We have, and still are, very fortunate to be progressing through this HLHS struggle so smoothly.  We have to be comfortable with fact that there will be complications, hurdles, and setbacks.  Today was a reminder that our prayers, vigilance, and steadfast dedication to the “finish-line” (3rd surgery) has to be maintained.  Katie is resting peacefully this evening.  We are still expecting to go home tomorrow but we go home with the knowledge that we will be back soon and a reminder that we have a long road ahead.

Vickie and I are doing quite well.  We’ve learned to adjust to these twists and turns.  Our immediate focus remains in the moment, and our long term vision is commited to the day Katie is living a normal life.  We don’t have time for “what ifs” or second guessing.  Interestingly, I am still happy tonight!  I wish we were happy somewhere else, but being with Katie is the ultimate happiness. I’d rather be here with her than anywhere else without her!

Side bar-  Many people have wished us well and marvelled at Katie’s strength.  People have said she is brave, courageous, special etc.  While all of those statements are flattering for her smitten father to hear, I have to tell you that I don’t believe there is anything about Katie that makes her better than anyone else.  I do think what makes her special is her capacity to maximize all that is good in the human spirit.  To say that she is somehow better than anyone else understates the capacity of others, and misrepresents the true impact that Katie can have on each of us. She is tapping into resources that lay dorment in many of us.  She is opening herself up to her truest capacity, and because her limitations have come at such a young age she doesn’t know what an excuse is or what a limitation could be.  if we are to learn from her, learn that you can.  Katie makes her Daddy proud every day, b/c every day I know she is doing her best.  I hope that this will continue for many a year to come.

Slight Change in Plans

Mommy and Katie enjoying some quiet time

We were back at Yale yesterday for another echo.  As I mentioned in a previous blog, Dr. Asnes wanted to keep an extra close eye on some things in Katie’s heart.  Instead of our normal 3pm time though, we were stuck with the 1pm slot.  It was bad b/c it really interfered with my work day, but it was good b/c we hoped that we wouldn’t be the last ones out of that area of the hospital as we had been at our other visits.  Guess again.  We left the hospital after 5pm!!!!!  Yet again, we were the last family out.  It was a more interesting afternoon than we had anticipated. 

Katie is having her catheterization on Tuesday.  That’s right- 3 days from now.  The leakage in her tricuspid valve has gone from non-existent, to very insigificant, to modest.  Furthermore, there seems to be a “velocity issue” with her aorta which could be nothing or could be some form of blockage.  Rather than wait and keep tracking, Dr. Asnes has moved up her Cath’ and decided to see for himself.  We’ll go into the hospital on Monday night, Katie will undergo the procedure on Tuesday in the late morning, and we hope to be home on Wednesday.  That is the plan…(the results of the Cath’ will determine the timeframe for the next surgery).

Vickie and I are very comfortable with the Cath’ happening now versus in a couple of weeks as we had originally thought.  We knew that it had to happen, so why wait if there are some unanswered questions or lingering concerns.  Our only issue is the fact that Katie has to do this at all, at any time.  Whether it is now or later is immaterial- the notion that she has to be interfered with at all remains a frustration, but certainly beats the alternative!!!

Katie’s Cath’ should take approx 3 hours.  There are a number of possible scenarios that could come about which I’d rather not go into in detail.  The main one that is worthy of note is that she may have an angioplasty (dilation of her aorta) during the procedure if need be.  It’s funny, b/c a dilation doesn’t sound so bad, does it?  But angioplasty sounds so serious!!!  My dad had an angioplasty a couple of years back and I remember being so concerned.  It wasn’t life or death but my Dad was having something done to his heart-  I recall being so somber waiting to get word of how it went.  Now Katie is simply whipping in and out of the hospital to get a quick “thing” done to her heart.  Either my Dad is soft or Katie is a powerhouse, and I KNOW the first one isn’t true!

big cheeks, blue eyes…

There really isn’t much else to report.  Katie is getting bigger and bigger.  She is developing more and more of a personality.  And besides the meds, visits, and scars, she’s a pefect little bundle of joy.  Just this evening I commented to Vickie that it never gets old to look at her or play with her.  No matter how bad a day you are having, all I need to do is look at her and it’s better.  She puts everything in perspective.  She makes life easy.  Like everything beautiful, elegant, or great it is the simplest activities with my wife and daughter that make my life so special.  You know? The nicest cars have a simplicity about them…the best athletes are not the flashiest performers…and as I always claim, the best looking people look good as good in shorts and a t-shirt as they do in expensive outfits.   Katie’s impact on me is in essence the same thing.  Lying next to her, listening to her babble away, smile in my direction, and react to my voice makes every other “grown up” problem disappear.  SImply being in her company is perfection!

Mommy is done feeding the little one, so I’m out of here-  I’ll keep you posted.  I suspect I will write more from the hospital. Life isn’t as much fun there!

Poor People of Yale, I Fear for You

Happy 2 month birthday, 5 year anniversary to us!

So we were back at Yale on Friday afternoon for another wonderful cardiology appointment.  Unfortunately, since our last visit Katie has grown a bit and has become her own woman!  I fear that she’ll no longer lay there as the technicians perform her echo…if this is anything to judge by, those poor employees are going to earn their money at Katie Manning’s visits.  While she is generally a placid and happy baby, she decided to play the role of Katherine, daughter of Satan, when being examined this past week.  I have to say, at some level it was funny to watch the poor lady grow more and more frustrated with our stubborn little one. 

After a herculean effort by all (Mom and Dad were holding arms and legs so that the tech could complete her examination), the news was generally positive.  Katie’s leak hasn’t worsened, so no need for an expensive plumber!  However, after looking at her stats and reviewing her echo, Dr. Asnes has modestly adjusted our short term timeline.  We will be back to visit him next week (rather than in 2 weeks), we’ll have Katie’s catheterization in the next 2-4 weeks, and the 2nd surgery when Katie is 3-4 months old instead of the originally planned 5 month point. 

To be honest, Vickie and I are happy with the new timeline.  We both see the 2nd surgery as a major milestone, so we’ll be glad to cross that line.  Granted, we don’t want to move too quickly, but all indications suggest that our little Monster will be ready soon.  Get this, I think that Katie will be over 4Kg’s tomorrow.  She was 2.9Kg’s when we came home from the hospital…she is growing a lot!!!!!

After our appointment we went back to the NBSCU (Newborn Special Care Unit)  to visit Nurse Erin.  Erin was amazing during our short time on the floor and we are lucky and happy to stay in touch with her.  I was suprised at how difficult returning to the “4th Floor” was.  While the people there very obviously saved Katie’s life, it is also the location where we learned of Katie’s condition and made numerous life & death decisions.  Overall, it was a nice visit-  seeing people’s reaction to Katie’s development was a great reminder of Katie’s progress.  And the coolest part of the visit-  when we went to the front desk to let Erin know we were outside they announced that “Baby-Girl Manning, a graduate of the NBSCU, was at the front desk.”  While on some fronts this is a very strange type of announcement, it felt amazing to Vickie and I.  Unfortunately, some of the children that arrive at the NBSCU under the same terms as Katie don’t always have the successes that she is currently enjoying (knock on wood).

First Real Bath

The rest of the weekend was spent as planned.  A quiet Friday night of family time.  A fun Saturday where Vickie and I played tennis and went out on a date (albeit a lunch date).  We came home for another evening of low key family time, that was highlighted by Katie’s first real bath.  Her incision has healed well enough that we can now enjoy the full-contact fun of a big-girl-bath.  To be fair, I think that Vickie and I enjoyed it more than Katie…but that’s okay too, right?  Sunday to date has been much of the same. 

Saturday was the numbers day-  5 years married, 4 years at my current job, 3 places of residence since we were married, 2 happy parents, 1 miracle daughter, and 1/2 a good heart…we’re working on the last part!

I’m off to enjoy the waning hours of the weekend. 

PS-  icing on the cake– Padraig Harrington wins the British Open.  Katie’s streak is alive and well!!!!!!  There is no sport impervious to Katie’s magic…soccer, basketball, tennis, golf…maybe we should look into the horses- there’s money there!

Check- another thing done

Tonight the three of us went to the beach after dinner.  Ever since Vickie got pregnant I was excited to walk the beach with our son or daughter.  I don’t know why, but walking along the waterfront pushing my child in a stroller with my wife by my side has been a vivid daydream since I knew that our dream was becoming a reality.  Tonight we did it.  Guess what?  It was better than the dream. 

I showed Katie where Daddy proposed to Mommy and then we proceded to walk the path, causing many the passer by to pause and try to catch a peak of our munchkin.  It’s so incredible to me.  People in general are so excited by the sight of a baby.  Even the toughest men turn to mush once they lay their eyes on a newborn.  I can’t help but wonder why.  Why do we all care so much about something so small, and then have our care diminish as that baby grows?  The only thing I can think of is HOPE.  Babies are the ultimate blank slate- innocent, open, unlimited in their capacity.   

At some level, I think that’s why the news of Katie’s struggle was so difficult for people.  She is still so innocent and open but her unlimited capacity is challenged.   The word that I have found myself using a lot lately is compromised.  For example, while I still have the fondest memories of Katie’s birth, my memories are tempered or compromised by the knowledge of the hardship that we faced less than 48 hours later.  It is perplexing for those that meet Katie b/c to look at her is to look at an adorable little baby.  She is alert, playful, and abounding with her own personality.  Yet, we all tend to look a little closer, a little longer, to make sure that all is okay. 

I suppose this is my round about way of saying that I have a very normal little girl who has the predisposition to go abnornal at any moment.  We remain vigilent…hopeful…excited.  However, we also remain somewhat tired…weary..and nervous.  In the end of the day what I KNOW is that I have a beautiful wife that I will be 5 years married to this Saturday.  This Saturday is also my beautiful daughter’s 2 month birthday.  Who knew that the number 19 would be so lucky, would mean so much?  Who knew that I’d be surrounded by such beauty?  Good stuff.

Picture Time!

 

 

 

 

 

 

 

Katie chillin’ in her crib!

 

 

 

 

 

 

 

Daddy & Katie do it up in pink!

She walks…kind of.

oh brother…so tired.

Peaceful. Beautiful.

Post bath baby- so cute…big eyes.

 

 

 

 

 

 

 

 

 

Frogger sleeps on Mommy.

Update on Doctor’s Appointment

(Picture- the first picture of all 3 of us since the hospital.  It is pretty fitting that we are all doing the “head tilt.”  We are getting a LOT of sympathetic head tilts ever since Katie’s diagnosis.)

Well we made the trek to Yale again yesterday to meet with the cardiology team and surgeon.  While it is only a 10 minute drive, it is still a bit of a production b/c we aren’t too used to mobilizing the troops to leave the house…we’re getting better.  All in all the appointment went well.  They are satisified by the measures that she scored from our daily home readings, with her weight gain, and with the healing in her incision.  However, it wouldn’t be Katie without a slight kink.  After the echo they learned that Katie has some modest leakage in her heart.  There are a lot of technical terms including tricuspid, aorta etc. but the core of the issue is this-  most HLHS kids have some leakage after the Norwood but Katie had none. Now, she has decided to join the masses.  The only concern is that if she had none before but has a little now, is it a worsening condition?  That being said, we need to go back next week as a precaution to make sure that her leakage is in fact “normal” and not a bigger issue that needs to be addressed (if it is, insert big words like, early catheterization, dillation of aorta blah blah.  We’re not too worried for two reasons.  First, the doctors don’t think it is a worsening situation and they haven’t been wrong yet.  Second, if they are wrong we can address it fairly readily.  After all, it is only a “modest” amount of leakage…our daughter, modest.

Overall, we are still positive and trucking forward.  I think I put my feelings best in an email last night when I said that everything went okay for Katie but the appointment was a vivid reminder that she is not OKAY.  While not too big a deal, it is a sobering reminder that we have a LONG road ahead. 

Winning For Sale!

(Picture #1- Katie celebrates Nadal’s victory wearing Mommy’s shirt!)

Another major sporting event, and another victory thanks to Katie! Since Katie was born, no team or individual that I have supported in a major sporting event has lost.  Man United won the Champions League, the Boston Celtics won the NBA Finals, Spain won the European Championships, and today the most unlikely of them all…Rafa Nadal toppled arguably the most dominant tennis player ever, Roger Federer.  Federer had won 5 consecutive Wimbledon titles and hadn’t lost a match on grass in years.  While we like Federer and hope that he separates himself from the likes of Sampras and Borg as the greatest ever, we love Rafa’s passion and untouchable energy. I thought that Nadal had a chance today, but it was going to be a monumental challenge. What happened?  After over 5 hours of play, Nadal beat Federer in one of the best sporting events that I have ever watched!

This incredible run will soon have to be marketed…have a team in need of a win?  Desperate to guarantee success?  Yearn to overcome that hurdle?  Hire the Magical Katie Manning to support your team and your dreams can become a reality…haha.

We had a very peaceful day today-  the tennis started at 9am and didn’t end until almost 5pm.  It was a Dolly Parton sort of day….9-5.  We lay around, watched tennis, enjoyed each others company, and rested.  Vickie, Katie and I had the perfect end to the perfect long weekend.  With every passing day our lives become more normal-  I’m not sure if Katie is striding toward a normal infancy or if we are quickly adjusting to our new lifestyle, but either way, life is GOOD!  Katie is continuing to grow cuter and cuter.  She is starting to eat us out of house and home and is gaining almost 3 times her required daily weight gain over the past 3 or 4 days…excellent. 

It is an understatement to say that I love my daughter.  For those of you that have been following along, I think that is pretty well understood.  However, as I watched Nadal and Federer today, I began to understand a deeper connection I have with, and admiration that I have for my daughter.  There is nothing I like more than competitive sports being played at the highest level.  But more than just competition, I like a dignified and respectful competition…not people thumping their own chests or acting for the crowds- just pure competition where the desire to win is palpable but never at the sacrifice of self-respect.  Furthermore, the will to win does not negate your opponent and their goals.  As I marveled at the feats of today’s Wimbledon final I was saddened that it is unlikely that Katie would never feel that thrill of athletic competition…one of the single biggest non family pleasures I enjoy.  Then I gained the bigger perspective-  Katie is the ultimate competitor.  Every morning she wakes up is testament to her passion.  While I may never get to watch her hit a winning double handed backhand or buzzer beating jump shot, I will get to watch her, period.  That is the ultimate win, the truest victory…that makes me the proudest dad.

(Picture #2- people keep asking if she is getting bigger and cuter.  Enough said. [this is not gas nor a poopy diaper-  this is Katie laughing for Mommy as she does every day for the past week or so])

Worrying Information (haha)

Katie had a pediatric appointment today.  She weighs in the 50th percentile, is an appropriate height, and had an overall positive visit.  However, when they measured her head she only measured in the 30th percentile.  How can a daughter of mine have a less than average head size??  Something seems off-  I have been ridiculed for this oversized cranium for years!  I suppose I should thank God for small mercies.

Katie was 6 weeks old yesterday.  It seems like an eternity ago that we sat in Milford hospital.  We’ve come a long way through many ups and downs since then.  For the last couple of days I have been experiencing a wide range of emotions.  On the one end I am overcome with love and gratitude for my family.  To come home from work to see Vickie and Katie is more than I could have ever imagined, and certainly more than I deserve.  However, for every heart flutter I get from thinking of our special life, I am starting to grow wary of the next surgery. 

At some level, the last surgery was a case of “ignorance is bliss.”  While I know this is the right thing to do and that the team working on Katie is as good as it gets,  I can’t help but feel both frustrated and jaded by the thought of jumping back on the surgery rollercoaster.  I am glad that these thoughts are secondary to the butterflies I get when I think of the life we have, but every now and again it does poke its ugly head up.  While I can rationalize and intellectualize the emotions away, it is never enough to totally rid me of the feelings…normal enough I suppose.

Some of you will be glad to hear that I have stopped serenading Katie with David Gray.  Instead, I exposed her to U2 live at Slane Castle last night.  She seemed to love it…that’s my story and I am sticking to it.  Interestingly, lyrics become far more powerful after going through the life altering events that we have dealt with-  especially “All I want is You.”  I have always loved this song, but now it takes on a whole new meaning to me…

“all the promises we made, from the cradle to the grave, when all I want is you.”

Picture- How could any father or husband want more?  This is what I get to come home to every night.  No more words needed.