Cardiology Update

We had Clayton's cardiology check up on Monday.  His EKG looked unchanged, and he sounded great, so we were able to skip the echo.  Clayton weighed 28lbs even, and his oxygen sats were 82%, slightly decreased, but not too bad.  We'd like him to stay in the 80s, if possible.

The normal topic of conversation was then discussed.  When will this boy weigh 15kg (33lbs)?  Well, not anytime soon is the best estimate.  He is gaining, but it is very, very slow (1 pound this last six months).

For now, we plan to go another six months and then see where he's at weight, sat, and cardiac-wise.  At this point there seems to be no need to rush into a Fontan.  Clayton's heart function is good, and his valve leaks do not seem to be causing any problems at this point, so we're just waiting.  There may come a day when we have to just bite the bullet and do this surgery, but that day is not here yet, so for now, it's just wait and see.

FYI- There are two different ways to do a Fontan.  Clayton will most likely receive the extra-cardiac version, which is preferred by Stanford.  In this procedure a conduit is placed around the outside of the heart.  If the child is 15kg, it's likely they can place a conduit large enough to last into adulthood.  If a smaller conduit has to be placed, the surgery will most likely need to be repeated around puberty, which is what we are trying to avoid.

The other Fontan method is a lateral baffle, where the pathway needed is created within the heart using actual heart tissue.  Because a child's own tissue is used, this "tunnel" will grow with the child, so their size at the time of surgery doesn't really matter.  These children typically have their Fontans earlier than the extra-cardiac kids.

There are pros and cons to both.  From what I've seen, the extra-cardiac may be a little more popular, but not by much.  One down side to the lateral baffle is that many kids eventually require a pacemaker, something that is more often avoided with the extra-cardiac version.  I think that's the biggest reason Stanford prefers the extra-cardiac Fontan at this time. 

These procedures in HLHS kids are still developing and continually changing, and only time will tell which methods produce the best long term outcomes.  We're so grateful there are treatments available.  When I was born in 1980, there were no treatment options.  I probably would have died before anyone knew what was wrong with me.  When Colin was diagnosed in utero, an older pediatrician at my church approached me and told me that when she was in med school, hypoplastic left heart syndrome was taught as a condition "not compatible with life".  A lot has changed since then.

Norwood Anniversary

Clayton had his Norwood four years ago today.  What an emotional day.  We went down to the NICU at about 6:30am to say goodbye.  He left around 7am for the OR and returned to the CVICU early in the afternoon.  When the surgeon returned, he was optimistic.  One of the fellows we knew really well from Colin's stay came in to assure me that Clayton's anatomy looked nothing like Colin's.  He had been in the OR in all of Colin's surgeries, and I could tell he was very sorry we were back.  He too was very optimistic, which meant a lot to me. 

Clayton definitely didn't have the easiest Norwood recovery, but compared to Colin, things went very well.  I think there was only one frantic middle of the night "get down here" call.  It did take almost two weeks to get his chest closed after surgery, due to his tremendous swelling, which was obviously traumatic to me, but they were eventually able to squeeze him closed (graphic, isn't it?).  He was released from the hospital on June 4th, and we went home to Fairfield, CA on June 6th.  I can't describe how lucky I felt to be taking a baby home. 

These were Clayton's daily meds when he first came home.  Meds were at 6am, 7am, 8am, 11am, 12pm, 2pm, 10pm, 11pm, and 12am.  I drew up 24 hours of meds at a time, usually between the 8 and 11am doses.  That was also the time of day that I recorded Clayton's weight and oxygen sat.  A couple weeks later we were able to shift the midnight meds to 11pm, which we thought was fabulous.  I think I might have killed myself by now if this was still the schedule.  Some had to be compounded.  One had to be ordered from a pharmacist in Phoenix because he was the only person in the US to compound that specific med.  Some had to be refrigerated.  Some were light sensitive.  Some interacted with each other and had to be given at very specific intervals to keep from having a reaction.  Oh, and there was the feeding (by pump of course), changing, bathing, regular newborn stuff to tend to as well.  It was definitely survival mode.  Luckily, at the time we didn't know any better.

Clayton's meds today.  8am, afternoonish, and 8pm.  No one needs refrigeration or is light sensitive, and everything can be purchased at CVS, which makes everything easy.

I've just been a little nostalgic lately about how far my boy has come in the last four years.  It certainly is remarkable.

It's Still a Boy!

I had another Level II ultrasound with echo today.  First things, first.  This baby is in fact still a boy, obviously a boy, absolutely all boy. 

The tech and high-risk doctor spent a lot of time looking at the baby's heart.  The doctor is usually pretty quiet and intense while he examines the baby, and today was no different.  I think my heart races through the entire exam.  I can see the left ventricle, and I'm constantly trying to assess how much blood is in there and if it's actually pumping itself, or if it's just along for the ride (like Clayton's).  After a few minutes on the heart, the doctor began pointing out all the different structures, and he said that everything looked wonderful.  Everything looks to be where it should be and was size appropriate.  He said that if he had more time he'd take some extra pictures to use in his lectures because everything looked so great, and the baby was in a really good position for the exam. 

What a relief!  I'm 23 weeks now, and this is right in the ideal window to look at the heart.  There is always the possibility of smaller defects that can't always be seen at this point (ASD/VSD), but we're almost sure this baby doesn't have any major cardiac complications.  The doctor then said he really didn't want to see me back for 7, that's SEVEN, whole weeks.  What?  I've never gone seven weeks without an echo in any of my pregnancies.  He said to trust him, so I did.  He will do another echo at 30 weeks, and then hopefully, we'll call it good. 



The baby kept his hands up near his face for most of the appointment, but there are a couple shots where he moves his hands down just long enough to get a good look at his face.

We're looking forward to early August.

Happy Birthday Clayton!

Clayton turned four on Saturday.  We were in College Station for the weekend and were able to celebrate with a few friends and family.  Unfortunately the birthday boy contracted a not-so-pleasant birthday stomach bug, so the partying was limited.  He did manage to make an appearance to open gifts and eat a piece of ice cream cake (against my better judgement).  Thank you to all who stayed during some not so pleasant moments.  I can't believe you didn't run for the hills.  I would have.

I can't believe my boy is four years old.  He definitely had a rocky start to life, but the past couple years have been good to us.  We are so fortunate to have him with us.  Happy birthday Clayton!  May the Lord bless you with many more birthdays to come!

Opening gifts

Clayton picked out sports themed plates, so Nan ordered this beautiful ice cream cake for him.

He loves when people sing Happy Birthday to him.

Blowing out candles.

He enjoyed his cake while he was eating it.  Unfortunately it didn't end up agreeing with him.  Yuck.

Somone else loves cake too.

Texas Bluebonnets

We spent the weekend in College Station, and lucky for us, the bluebonnets are a few weeks late this year and were out in their full glory while we were there.  My dad, Meghan, Ryan, and I took the kids out to take some pictures.  I took 65 pictures.  Meghan took 70.  We got a combined total of about five that we loved.  There were a few okays.  There were oodles of rejects.  None of these three kids had any intention of looking at a camera that day.  It was too bright and too exciting.  That's okay.  We had the same problem last year and will most likely have the same problem again and again in the future.  We love our bluebonnets and are always grateful when we're in central Texas in the few weeks they're blooming. 

Pop made this little boquet to try to entice Clayton to look at the camera.  It almost worked.

I do love this one of my newly-turned four year old exploring.

Meghan and Lizzy "playing" (translated: Meghan attempts to restrain Lizzy for a mother-daughter shot).

Our only family photo.  When enlarged, it's clear that Clayton is NOT picking his nose, but at this size, I know you're wondering.

An attempt at a moms and kids picture.

So sweet.

Loving my little man.

Strolling with Pop.

I love this picture of Ryan and Eli.

The cousins.

It's Warming Up

Well, not today brrrr, but in general.  Last night we had spaghetti for dinner which means a shirtless dinner (only for the boys... ha ha!), and the boys made it outside to play before shirts could be replaced.  I had to take a few pictures of these cuties.

Whether their belly hangs over their pants or their adjustable waists are pulled as tight as they'll go, you've got to love little boys in blue jeans!

Colin Joseph

Colin's Easter Lily

August 17, 2004- April 4, 2005

It's been five years.  Some years are harder than others, and this has been one of the hardest.  Seeing the boys grow older and closer without their brother is difficult for me.