"He's got a great heart"

6 weeks old, Nags Head 1995

The first great adventure out of the house with a newborn is flummoxing.  Do I have enough wipes, diapers, changes of clothes, burp clothes, and on and on the list seemed.  The books advised and admonished what a capable, ready-to-handle anything mom would have in her arsenal and like a dolt I charged ahead with everything but the kitchen sink.  Portable electric wipe warmer, three changes of clothes with matching pacifiers -- it does not sound like me.  But that's what I did.

6 weeks, Nags Head 1995

And every day seemed huge.  That outing in the stroller could take a good 20-30 minutes to get myself and the baby together to amble to streets of the Fan.

I remember fixing dinner and feeling like I was a rock star.  Making my bed -- whowee nothing stopping me.

By the fourth kid, I was lucky to toss a diaper in my purse with a small thing of wipes.  Extra outfits -- he could always go in the buff.  And my stress in handling getting out of the house was much less.

Not graceful but functional.

Lately I feel like every day is like those first weeks of newborn life.  Everything feels huge and monumental and that I could screw up at any juncture.   I work on one thing and 30 other things need tending.  Nothing is complete.  Everything is half-assed.  And this with the help and kindness of friends who are cooking and carpooling and in general being really nice.

Hiking in Blue Ridge, October 1995

Two days ago Houlder hit his own wall and we went back in to see Tipton.  Thank God that man is patient and listens to my kid.  He is racking his brain trying to figure this out.  I shared the idea to show up at ER at Mayo.  He thinks maybe but let him contact doctor first.  We shall see.

Yesterday Houlder saw the wonderful doctor who performed Frazer's heart repair.  Houlder has been having racing rates, dizziness, wacky blood pressure and shortness of breath.  We are starting to explore autonomic dysfunction syndromes which seem like a grab bag of nothing and everything.  One nice thing Moskowitz was able to tell us is that Houlder's heart is great.  It is good working order and looks strong.  He also feels like the medicine he responded to at UVA would indicate a vascular component but that yesterday nothing seemed out of whack. 

 

 

November 1995 in christening present from Uncle Randy

 Great.

I think.

Moskowitz, Shaw and Tipton had traded numerous emails before Houlder even showed up.  That is good.  Effective.  But, we netted no answers.

Houlder has been a mess all morning.  Almost passed out in shower.  Heart rate at resting high.  Yet, his heart is good.

December 1995

These weird things may mean something or not.

Kind of like, you may need fourteen diapers if you are out for two hours -- or not.

Logic and preparedness seem at odds and my brain is pitiful in collating the information.

But, my wall is crumbling a bit.  Since my last post, I have heard from folks who can ferret out information on Mayo, on other doctors, on other kids who have had similar issues, on friends who have ideas, and encouragement.

It is humbing.

Thank you.

February 1997, last month as singleton, Claremont

Houlder will be sixteen Tuesday.  Birthdays are always a time of reflection on the experience of birth and a newborn.  Houlder was my first baby.   He has been infinitely easy and happy.  I just wish the collective powers I am meeting and talking to and working with could help make that smile come despite the pain.   

William and I are starting to plan road trips Houlder and I will need to take this summer.  We have decided just go everywhere and try to find the answer.  Someone has got to have it somewhere.  We have been slow and methodical up until this point, but I am ready to go.  Try almost any idea and any therapy and any anything.

Houlder March 1998 with Harrison Weise on Claremont

We will need to find a way to make that work for the other boys and for William.  Nanny?  Childcare?  Camp?  Who knows?  Finishing up his report today and hope to start sending it out to doctor for feedback and then on to whomever will read it and see him.  

I am glad he has a great heart.  That is not news.  It's deciphering the mystery behind the symptoms.