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• Samson was born 2/24/2006
• His official diagnosis is mitral valve atresia, hypoplastic left ventricle, coarctation of the aorta, VSD, ASD. He is considered double-outlet right ventricle, but since his treatment is the same as hypoplastic left heart syndrome, they've categorized him as HLHS.
• He had all three surgeries at Children's Hospital Boston. His surgeon is Dr. Francis Fynn-Thompson.
• He had the Norwood at 4 days old. We were home in three weeks.
• He had his pre-Glenn cath at 3 months old. They balloon dialated his aorta at this point as well.
• He had his Glenn at just about 5 months old. We were home in 10 days.
• He had his pre-Fontan cath at just shy of 24 months. This was to determine whether or not he was a good candidate for the Fontan. He was.
• He had his Fontan at 27 months, and we were home in 7 days.
• Our diagnosis story is here.

After the news, we decided that we wanted something that really exhibited "strength." For months, Jay had been tossing Samson at me, and I kept saying no. Then, in a search for "boy names strength" - Samson came up and I brought it up to Jay. He laughed and reminded me that he had been saying it for months. Then, the next morning, Jay went to go do his assignment for his Old Testament class, and wouldn't you know it? He was to read the passages about Samson. Sign, anyone? Samson also means, "of the sun." This pops up in the inspiration for his middle name...

When I was first pregnant and terrified, whenever I got into the car, Loggins and Messina's "Danny's Song" would play. I never knew more than the "Even though we ain't got money... I'm so in love with you honey..." part, and after hearing it a few times, I finally looked up the lyrics -

It's all about being newly married, pregnant with a first child, a little boy. It fit us perfectly! There's a line about "Pisces, Virgo rising is a very good sign, Strong and kind, and the little boy is mine." Barring an insanely early birth, he'll be a Pisces like Jay. I don't know about the Virgo rising part, but I'll take the "very good sign" and "strong and kind" parts!

As for the Samson/sun thing: "He will be like she and me, as free as a doveConceived in love, sun is gonna shine above."

Both Samson and Daniel are from the Old Testament, and both survived being thrown to the lions - one through strength and one through divine intervention. Daniel was protected all night by an angel when he was thrown in. Samson took down the lions by brute force and then went back to gather the honey that bees made in the lion's skull.

Interestingly enough - I wanted the name Melissa for a girl. Melissa means "bee" or "honey." The Melissas are from one of my favorite books, The Fifth Sacred Thing. They were a group of healers, as honey harnesses healing powers.

It just makes sense - great protection and strength against lions. Keeping our little boy safe and strong against everything he's going to face. Honey to help heal him. It's all in there.

So Samson Daniel it is - Sam or Sammy for short. I'm still calling him my little monkey, though. That's what feels right for now.

So how it happened - well, I know you know how it happened, but I mean the whole finding out thing. I've been exhausted, and Monday I had a nervous breakdown on my coworker (who, incidentally, is 5 months pregnant) about how I couldn't do anything and all I wanted to do was sleep and that I felt like my brain had fallen out of my head. She told me to go home and take a test - especially since I was two days late.

Yeah. There wasn't even a question - those two lines shot up so quickly, my head started to spin. I kinda looked at it, cocked my head and went, "Hmmmm. Will ya look at that?" Jay was still work, so I had some time to process. I wandered around the house, coming back to the test, picking it up and looking, putting it back down and wandering more. Finally, I broke down and did another test, just to be sure. Wham! Two lines.

I had two hours until Jay came home, so I went up to the store, bought What to Expect When You're Expecting and So You're Going to Be a Dad, some prenatal vitamins, and pretended to be alllllll sorts of cool and collected when Jay called to let me know he was on his way home.

I sat on the front steps and waited. I hid the pregnancy test under the newspapers and watched for his car to come around the corner. When it did, I couldn't even wait for him to walk to the front steps - I hid the test in my sleeve and fumbled over to his Jeep. I told him to close his eyes and to stick out his hands.

He opened his eyes, looked over the two lines a few times, and then asked me: "Are you sure?" Then we sat on the couch for an hour and joked around, asking each other over and over, "Has it sunk in yet?"

I still don't think it has.

We took Monday night for ourselves, and then told family over the following few days. We couldn't do F1 Racing for my party because, strangely enough, they frown upon pregnant ladies zooming around a track at 45 miles an hour, and I'm just starting to get some semblance of energy back (nevermind the upper respiratory thing I developed this week - that I can't take anything for except for the antibiotics!!!) So my birthday was a mellow afternoon surrounded by friends and family, tasty bbq and floating in the pool, sipping my non-alcoholic wine and faux-daquiris.

Holy crap. We're having a little snazzy-baby. How are we ever going to top this birthday?!?!

 

PLEASE contact us if you want to talk. Having others who have been through this there for us (even when we just needed to freak out!) has been so, so instrumental in coming to terms with what's we're up against.

Thank you! We've been amazed at the influx of wishes and prayers and positive energy sent our way, and we can't begin to express how much that strength and support means to us. Please take a moment and sign the guestbook.

Please check out the resources. We were overwhelmed with what's availabe on the Internet; hopefully this will narrow it down a little for you. Be sure to read up on all the babies who are doing well - there IS hope!

Hope for children with Hypoplastic Left Heart Syndrome
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This Hope for HLHS site belongs to Erika, Jason & Samson

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