Because this poor kid hasn't been through enough already...
On and off since the cath, there's been blood mixed in with his poop. We weren't sure where it was coming from, the culture showed no virus, but it was there. His pediatrician didn't seem too concerned, but we were getting worried. Yesterday, which was the medical DAY FROM HELL (mammo for a supposed lump in my breast which showed nothing, the phone call with the date for Sammy's next surgery - which is almost a full two weeks earlier than I was planning on - and this), it got worse. The pediatrician made an appointment with the gastroenterologist on Thursday and wanted to see him this morning, just to "eye him over."
Yeah. Never made it to the pediatrician. Nothing like a DIAPER FULL OF BLOOD to freak a mother out and send her racing to the ER.
Turns out, after a long day at Childrens', our little monkey has an intolerance for milk proteins. The last few months of second-hand yogurt, ice cream and milk wreaked havoc on his poor little intestines - hence, the blood.
So this mama gets to completely cut out milk and soy from her diet. Sure, switching to formula would be easier, but I really believe breastmilk is best and I want to do everything I possibly can for him - even if it means forgoing cheese and lattes for a few months.
So - it's been fun over on this end. My poor little monkey.
Interesting tidbit - this time, this day last year, I was the only one who knew I was pregnant. While I sat around the living room, eyeing the test and waiting for Jay to come home, I wrote the following:
Dear baby,
There's one thing your dad made me promise: don't get pregnant before my birthday. I turn 30 on Wednesday. It's Monday, and there were two little lines on that little plastic stick screaming, "Happy birthday Mommy!"
Whoops.
I've been really tired the past few days. My period's been screwy the past few months, but I knew last month I got it on the 18th. It was early - I'm usually around the 24th, so this month I wasn't sure if I was due the 18th or the 24th or somewhere in-between. This morning I felt a little sick - it was different than the normal nausea - and I was exhausted in a way I couldn't imagine I'd ever be exhausted, so I decided to pick up a test on my way home.
Two little lines for something so incredibly huge.
I'm still trying to figure out a fun way to tell your daddy. We've been working around the house a lot the past few weeks, and we're so tired (though at least now I know the exhaustion isn't just because I was painfully out of shape!). I was thinking about hitting up when he walked through the door, telling him not to get mad, but that I have another project for him... and this one's kinda big.
I know this is one project he won't be complaining about!
I've got two hours until he gets home, and I'm bursting at the seams. Ready for nap, but trust me - bursting at the seams.
Holy crap. We're having a baby.
Love,
Mommy
(P.S. It still doesn't feel real.)
And you know what? Sometimes it STILL doesn't feel real. :-)
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The last results from the amnio came back today - no DiGeorge's Syndrome. YAY!
Fetal echocardiogram, ultrasound and ob appt, all squished together on Friday. Ick. I just can't wait for it to be over with. I'm dreading finding out something else in the echo. I'm just ready to have a secure sense of what we're facing, especially now that the amnio cleared up a lot. This wait game is killing me.
Speaking of wait game, let's pause for a moment to discuss the ridiculous weight gain. Holy mother. And I eat really well, too! You'd think I'd be drowning my fears in ice cream, but that's not the case at all. Sure I spent the first few weeks on "couch rest" - but really, almost a pound a week? Yeah - do the math. What the hell? So we're trying to be more active - walking daily, yoga in the morning. So what if we only started on Sunday and it's only Tuesday - it's a start! It won't reverse the hell that is my hips, but maybe it'll slow down the rest from here on.
Besides, they want him to be as large and as heavy as possible at birth - it'll help him through the surgery. If momma needs to gain a little bit more to help out with that, well then - pass the 'taters.
In the meantime, I'll try to ignore the fact that my ass is now wider than the rest of me. Oy. There will be plenty of time to get back in shape after, right? And some women DO gain all the weight early on and then slow down... Sure. That's what's going on. Though I definitely find myself giving the evil eye to skinny, non-pregnant women I see on the street. Grrrrrrrrrr.
It's for a good cause. It's for a good cause. It's for a good cause. And I just need to tell myself that I still weigh less than I did in college. A baby is worth the weight a hell of a lot more than the beer ever was.
Oy.
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Full amnio results are back - he's 100% clear of the trisomies!
Wooo hoo! Waiting on one more call - the 22q11 deletion. After that, we focus 100% on his heart - and maybe, just maybe, we'll get to go three weeks without a doctor's visit, EKG or some other random test.
But yay! None of the trisomies are present. Can I get a "Waaaaahooooo!"?
My mom called me this morning. A friend of a good family friend is a deacon, and there was some grand meeting of the 60 or so NY deacons this past weekend. Apparently, they had prayer time just for Samson.
Holy absolutely crazy, batwoman.
My kids are all focused today, the vomiting thing that took over my tummy yesterday is gone, this Hershey kiss tastes awesome, the kids are finally starting to comment on how big I'm getting, and we may never have to deal with the icky genetics counselor again. Way to go, Monday!
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We got the preliminary amnio (FISH) results back, and they're negative for Down's Syndrome and the other defects we were concerned about. These results are 98% accurate; we'll have the full results back in about a week. I feel like 98% of a weight's been lifted off our shoulders - there's still something else they're looking into (something called 22q11 that we don't even know much about yet) - but yay! 98% certain there's no trisomy 21, 18 or 13! Yay!
Whew. Now we can focus on his heart.
Oh, and little Samson's definitely 100% a boy!
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We're home, and it's not good.
The EKG showed that little monkey has Hypoplastic Left Heart Syndrome. Essentially, Hypoplastic Left Heart Syndrome (HLHS) is "a condition in which the left side of the heart is underdeveloped, is rare, but it is the most serious type of congenital heart disease. With this syndrome, blood reaches the aorta, which pumps blood to the entire body, only from the ductus, which then normally closes within a few days of birth. In hypoplastic left heart syndrome, the baby seems normal at birth, but as the ductus closes, blood cannot reach the aorta and circulation fails."
Essentially, a baby with undiagnosed HLHS that is not caught immediately after birth likely will not live past three or four days. Because we know about it early, it means planned heart surgery after birth, another heart surgery at 4-6 months and another at 3-4 years.
Staged palliation for HLHS is one of the great achievements of congenital heart surgery in the 90's. In what used to be a uniformly fatal disease, consider the following: Survival following a Norwood operation is around 80%, following a bidirectional Glenn operation around 100%, and following a Fontan operation around 95%. Overall, survival at 5 years of age is around 70 - 75%. Most patients who get through the three stages do quite well: Very few are on medications, almost all have normal growth and development, and very few have any exercise or other kinds of limitations.
This means I will need to give up our small midwife center in exchange for a large hospital in Boston. Clearly, we need to do what's best for the baby. The hospital is connected to the Children's Hospital. Our pediatric cardiologist was very supportive; he does work with CH and said he would tell a couple in Arizona with this to fly to CH for their care. Apparently, we're lucky to be so close to such an amazing hospital. (Interestingly enough, CH was featured in a Newsweek article for this exact syndrome, though the pediatric cardiologist didn't think we'd be candidates for this experimential procedure. He's taking our tapes down to CH this week to share with his colleagues.)
Another concern: I've got to go for an amnio this week. Should that turn up Down's Syndrome as well, the baby will not be equipped survive after birth, let alone survive the surgeries. We're still trying to deal with that possibility. If that's the case, we might have to terminate the pregnancy. Even if I carried him full-term, he wouldn't survive. We'll know later this week.
If it comes back fine, then the rest of the pregnancy should be okay. It's once he's born that we start facing the real problems.
Needless to say, we're devestated and are trying to cope with the information and emotional overload of the day. My parents are coming up tomorrow; Jay's mom will be here this weekend. If we seem distant (or needy), you know why.
I'm trying to remain hopeful, but I think we're both just so exhausted that we can't think straight. I appreciate all your good thoughts for today; I wish I had something different to share.
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