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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Hey.
Sorry I've been quiet - it's been a rollercoaster week.
We went to Sammy's cardiologist appointment on Tuesday. It was rough for me - I didn't want to be at Children's. I was certain we were going to get a date for Sammy's next surgery, and I wasn't ready for that.
Instead, our cardiologist ended up doing an echo on Sammy because his pulse in his legs was weak, and found that there was scar tissue from when they tried to fix the coarcation during his first surgery. It's causing a bit of a back-up in his aorta. It's not a huge problem right now, but his cardiologist wants to take care of it as soon as possible.
So Monday we're getting admitted and he'll have a balloon catheterization and monitoring on Tuesday (during which they're going to try to stretch the scar tissue out and open the pathway), and hopefully, as long as things go well, we'll be home Wednesday.
Mama was totally not expecting that at all, and I go back and forth between feeling okay with things (my baby is sick and this will make him better) and being really upset about everything (they have to do work on his heart). Some days it's hard to look at him without my heart breaking a little. (I always feel bad using that phrase now.) I think it's part of being a parent of a child with a CHD - you're kind of always holding your breath a little, even when things are going well. And when they're not so good, it's even scarier. We had such a good run, and I was able to feel normal for a little bit, and it felt good. Now I feel like someone slammed me with a reality check, and toss in there that he's been off the past few days... well, worrying so much is just exhausting.
We did get a sense of when his next surgery will be - they're looking at scheduling for the end of July. We want the same surgeon who did his first surgery, so they're going to call us with a specific date. Part of me is afraid of having that date hanging over my head; the rest of me wants to be done with it already. I want that space between the 2nd and 3rd surgeries to feel a little normal again.
So on Tuesday, if you could send some of that amazing energy and prayer you all pulled off last time, it would be most appreciated.
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Hi all -
I know it's been a while since I posted. We've been trucking along - he's still measuring big and at yesterday's appointment, they bumped us up into the mild polyhydramnios range (too much amniotic fluid). No worries just yet, though I'm certain they'll want to revisit the idea of induction at this Wednesday's visit.
Otherwise, we've just been trying to get ready. I'll be 38 weeks on Wednesday, with Tuesday being my last day of work. His nursery is almost done, our hopsital bags are packed and I've been insisting that every little twinge is a contraction. I'm ready to be done.
You may have seen the news about baby Grace - she was the first in the world to have a certain in-utero procedure for HLHS. (We weren't candidates for this particular surgery.) We were lucky to meet up with Angela, her mom, before Grace was born, but didn't get to see them after. Baby Grace is doing FANTASTIC and was sent home after her Norwood in less than two weeks, which is INCREDIBLE. Our friends Alicen and Chris had their baby girl, Ellie, who underwent her Norwood about 10 days ago. She's had some minor setbacks, but is otherwise doing fabulously, and should be going home soon! We wanted to see them yesterday, but I'm still fighting a yucky upper respiratory infection, and little Ellie can't risk getting sick. If you could send some love and prayers to these families, that would be wonderful.
So we're down to a whopping 17 days until his due date, and then it's our turn. Come out, come out Sammy - any time! We're ready to meet you!
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We had another ultrasound & OB appointment last Friday (1/6/05). Sammy's still large - measuring in the 80th percentile at 5.1lbs. I gained a whopping one pound since our last visit, and learned that my amniotic fluid is on the high side of normal. This may not mean anything for now, but they want to monitor it because it could make my uterus go "Wheeee! I'm at the right size to pop this puppy out - let's go!" a little earlier than it should.
Speaking of earlier - they have me at 34, instead of the happy 33 weeks I've got on my calendar. So now we're looking at February 22nd, with a possibility of my uterus handing Sammy an eviction notice even earlier.
And so we move into weekly visits and the countdown speeds up a little, though I know we have such little control over when the little monkey will deem us worthy of his presence. Still - ack!
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I just got up from a looooong nap. I don't know if it's just the third trimester or everything else, but I'm so tired, all the time.
We had our second fetal echo in as many days. This was the official one at Childrens' Hospital in Boston where Sammy will have his first surgery, the Norwood.
The staged reconstruction for HLHS requires three operations. The first is the Norwood procedure, usually performed in the first week or two of life. In the Norwood procedure, the pulmonary artery is sewn to the aorta. This allows the only good ventricle, the right ventricle, to pump blood to the body rather than the lungs as it normally does. In order to get some blood to the lungs, a small tube of Gore-Tex is sewn from the innominate artery (artery to the right arm and head) to the pulmonary artery. This a major and very complex surgery, with the babies often spending several weeks in the PEDIATRIC INTENSIVE CARE UNIT after the surgery. When the child leaves the hospital, he or she will be mildly blue, or cyanotic. (from The Heart Institute at Albany)It was a good visit, sort of. We love the pediatric cardiologist at Children's too - Dr. Brown (apparently everyone loves him - all the nurses in the CICU giggled when we mentioned his name).
He told us what we heard yesterday - Sammy's heart is pretty much the same as before, just a larger version of it. He arranged a tour of the CICU for us, so we got to see the facilities as well as heart babies who had just gone through surgeries. We had seen pictures online before, so we handled it well - we saw one little boy whose chest was still open. It was a bit much to see THAT in person, but Sammy's going to go through it and I'd rather be prepared for what we're in for. The nurse couldn't tell us what was wrong with the little boy, but she said he was the most serious case they had right then. She was great - showed us what all the tubes and lines were, and told us which ones Sammy would likely have. She answered a lot of our questions, from pumping to breastfeeding to leaving toys with him when we're not there to staying overnight to well, everything we could think of.
When I asked if there were any HLHS babies there right now, she laughed and was like, "Of course. That's what we do here - we're the HLHS center." She said sometimes she needs to step back and realize how rare it really is, because they work so closely with so many HLHS kids all the time. It was really good to be somewhere where they know everything about his condition - to the point where it's routine for them. It actually felt, for the first time, like we were normal - we weren't a special case or an exception.
I think we both felt that we're in really good hands there. Not that we're looking forward to making that home for several weeks, but everyone seems so wonderful and the place is so well-equipped for little heart babies... I guess there's a reason why people travel from all over the world to take their children there.
32 weeks on Sunday, bi-weekly OB visit next Friday... and the countdown to his arrival begins.
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How am I 8 months pregnant already? We met with the pediatric cardiologist we loooove today. He wanted to see us on his dime - no charge to us or our insurance - just for his own education. The woman who did our echo couldn't get over what a wiggly worm Sammy is - seriously, he's all over the place!
I had some brief meltdowns - mostly when I watched him punch and kick and suck his thumb and then did the dumb thing of starting to think about how close his birth was and how the ability to keep him safe and happy and without pain was going to be out of my hands soon. I think most mothers have the innate desire to protect their child - and as his surgery and all the recovery with it draws nearer, the more difficult it is for me to understand that it is all out of my hands and that there's only so much I can do to protect him. It just kills me to think about how his world is going to change once he's here, how much he's going to face, how unfair it is to this little being who has done nothing to deserve any of it.
Anyway - according to Dr. Johnson, not much has changed. On a good note, his aorta is really large for an HLHS kid, and the left ventricle still seems to be in the same ratio with his right (about 1.6:1). He told us again that we have the best possible scenario for HLHS - but he reminded us, in his gentle way, that even with the best scenario, it is still HLHS. Another fetal echo tomorrow at Children's in Boston where we hope to get a better sense of what we're looking at for surgery & recovery, though nothing is a sure thing until he's here and they know for sure what they're up against.
Bath time and nap time for mommy. Energy levels are low anyway - apparently that happens in the 3rd trimester - but doctor visits sap everything out of me.
Hope everyone had a wonderful holiday.
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So we trekked into Boston today for the start of our bi-weekly visits to the doctor. Ultrasound first and then a visit with the nurse practioner.
What we learned today: I'm carrying a mon-stah! The King Kong of monkey babies!
Baby Sammy, at best guesstimation, at just under 31 weeks, is approximately four and a half pounds! Of course, that's a guess and it could go 13oz in either direction, but holy crap, he's huge. He's measuring almost 2 weeks ahead, and I'm trying not to imagine what 13oz in the wrong direction would mean. Eeeek!
He's also now affectionately known as my little buckaroo, since they confirmed what I already knew - he's one hyper child. (My coworkers have commented on my rolling belly in meetings!) He's also decided, much to our happiness, that breech just wasn't for him, and has taken to hanging from my ribs like they're monkey bars. I had figured as much, though, since about two weeks ago I could have sworn someone shoved their hands in me and rotated all my insides at once, and I've been feeling swift kicks to my ribcage more often than not. Head down, just where it belongs. Good boy.
Heart looks the same - but we got more of a glance-over than the intensive study we'll get next week at the pediatric cardiologist. We're hoping to get a tour of the NICU, see where he'll have his surgery and hopefully meet some of the surgeons. We met today with a woman from Childrens' who was wonderful and really put me at ease about the possibility of breastfeeding. It gave me a little hope, at least, and I now know that they're very eager to feed little monkey all the milk his Mommy can make!
(Holy crap, I've got a big bebe in my belleh!)
As for mommy - I gained a much more appropriate 4 pounds this month - much better than previously, and now I can attribute a chunk of it to him. The doctor said the cramping I've been having is "good practice" and seemed happy about it. I held my ground the best I could and really pushed to go to my due date before they induced me (previous conversations had made mention of scheduling an induction a week before). I think I might just win that battle. Yay mommy!
So, we head into the holiday break with some good news. I'll drink a rum-free, low-fat eggnog to that!
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Highlights of the long day at the doctor:
We're home. From where, you ask?
The hospital. The fun never ends!
I started having these weird sharp pains about 7 last night - bad enough that I was lightheaded and out of breath. They completely knocked me on my ass! They were nothing like the ligament stretching from earlier on, but there seemed to be little rhyme or reason as to the timing, so I figured I'd see if they went away. If they hadn't disappeared by my usual 4am wide-awake date with Cops, I'd call the doctor.
So they didn't, and by 5 we were on the road to Boston. I joked with Jay that we should enjoy this rush to the hospital, because if they weren't contractions (which I, in all my first pregnancy paranoia, was terrified they were - and so did the OB on call), they have plans to induce me before my due date and we might not get to experience that "Holy shit, we're having a baby!" panic as we race down the highway. :-)
They had me all hooked up to monitor his heart (for four hours!) and they ran a bunch of tests, all of which - thank god - came back fine. No dilation, no early labor, just a hyperactive baby playing trampoline on my cervix. Really - that's the best they can figure. He's a very busy little monkey, and some women (of course, if it's a minority, I fall into it) develop a very sensitive vagi-cervi-something or other, so the baby's movements can trigger sharp pains and spasms. They're not sure, though - all I know is that this little monkey has been crazier in the last 24 hours than I've ever noticed before.
Still, better safe than sorry. I'll take a "We don't know for sure what it is, but we know it isn't labor" over any of the more awful things they could have told me. I was having nightmare visions of bedrest, IVs and other terrible things, but they did a fetal fibronectin test and according to that, we're labor-free for at least two weeks. Considering I'm only 25 weeks, I'd hope labor's far away!
So I'm home to rest today with orders to come back if they don't subside or if they get worse. A warm bath, cheesy court TV and a comfy blanket are all on the afternoon agenda. The excitement never ends over here, does it? Geesh.
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We're home!
Things went as well as they could have at the fetal echo. They confirmed the HLHS, which we figured. My greatest fear was that they would find something else - which they did. When the cardiologist told us Sammy also had a large ventrical septal defect (a hole between the left & right ventricle), I started crying. He jumped in to let us know that this was a good thing! Apparently, it allows blood to flow out of the left ventricle and into the right - without it, the left ventricle would be capable of very little to nothing.
(Mind you, I could be messing that up - Jay understands this a tad bit better than I do. :-))
The left ventricle is larger than they normally see in HLHS - it's about 60% the size of the right ventricle. Considering that some babies are born with no left ventricle, we're actually in a good position. He also upped the 5-year, 3-surgery survival rate from the initial of 60-70% to 85%, and said that with what he saw today, we've got one the best scenarios we could have with HLHS.
Whew.
I found out some things about the delivery/after that made me less than happy, but I need to remember that at that point, the best hands for him to be in are not ours, but the doctors. It makes me sad that we'll likely have time to kiss him and hold him once before he's whisked away and hooked up for the prostaglandin, but they did say I should be able to be rolled up to see him 2-3 hours after he's here. Not ideal, but I need to remember that it's for the best in the long run, right?
And through all the chaos and stress of the day, 1) Sammy was ALL over the place in the 3 hours he was being poked and prodded and scanned, but we still managed to snag a 4-D picture of little monkey (I'll scan it in later; we're relaxing at Su's right now), 2) Jay was able to see monkey kick from the outside!, and 3) I got me a prescription for Zoloft to help knock the anxiety down a few notches. Now it's naptime until Su gets home, at which point we get to take her out to dinner to celebrate that she passed the bar and is now officially Susannah Esquire.
Whew. Next appointment in 3 weeks, and that's just an ultrasound and an OB appointment. Next echo at about 32 weeks. Thanks for all the well-wishes and positive energy - I really think it's helping!
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I am so angry right now.
When we left the amnio, they gave us a manila envelope from the evil genetics counselor. Just today I found the energy to open it.
In it was a brochure, "Your baby has a problem...." with with some basic info. Fair enough. But then there was a brochure about congential heart defects - FROM 1993. The section on HLHS is outdated and states that the outlook for babies with this is poor "unless a heart transplant can be performed" No mention of the Norwood procedure. Nothing about the surgical options they encourage instead of a transplant. And absolutely nothing about how, in the past two years, the outlook has gotten increasingly better - anywhere from 60-80% survival rates (like this article). It was put together by the National Society of Genetic Counselors. Nothing, nothing in this packet from the American Heart Association.
But it gets better.
There was a book called, "A Time to Decide, A Time to Heal" - and the whole book is about terminating and dealing with that grief. Even the few pages in it about continuing the pregnancy is a story about a couple that made it to term and lost their baby 33 days later. What the hell?!?
Don't get me wrong - I understand monkey's in a bad spot. I know he's got a tough condition, things are going to be scary and uncertain. But for chrissakes, would it have been so hard to find POSITIVE stuff about the recent advancements in technology that are making it possible for these kids to live a fairly normal life? Why does everything have to be so damned NEGATIVE?
You know, maybe this is good. All my anger about this can be directed at her and her young, naive attempts at giving us information. I swear, she's been determined from the start to have us end this pregnancy - from the statement that it "looks like he's got Down's Syndrome" (which he doesn't) to her remark that she's yet to see a woman who had a positive amnio for DS keep the baby to this whole big book about how to deal with making the choice to terminate.
My god. If nothing else, it's pushing me to be positive JUST TO SPITE HER. I'm not a vicious, mean person by nature at all, but I wanted to rub those non-DS results in her face, and I can't wait to have a nice long chat with her about sensitivity and bedside manner WITH MY THREE YEAR OLD SON sitting next to me.
We'll show her, Samson.
Sorry. I'm just really pissed off.
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We spoke with the pediatric cardiologist yesterday. I want to keep him in my pocket for the rest of the pregnancy - he's that wonderful. He just wanted to touch base and see how we were holding up, and he was really happy to hear how we were handling things. He also said that (and this is where I screw up all the big, important doctor-words) Sammy's aorta is larger than what they see in children with HLHS, so they're not sure if it's an uncommon form of HLHS or if it's AVS with an atrophic left ventricle. Either way, Sammy will 98% likely need the same three surgeries. BUT, he said, the left ventricle has been known to grown in the 2nd half of the pregnancy. It's rare, but it has happened.
So send all your left-ventricle-growin' vibes to the little man in mah belly!
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Wanna hear an embarrassing story about the baby? Jay's laughing and telling me monkey's going to punch me in the bladder for this (I have to pee reeeeeeeeeeeally badly and I'm too lazy to get up from under the warm blanket):
We had a whole entourage in the room for the ultrasound. She showed us his head, his spine, his arm... and then she headed south. And there was his boytoy - literally, because his hand seemed to already be playing with it.
Everyone started laughing - and wouldn't you know it? Little monkey turned his face away from the camera in embarassment. My poor little boy - this was not how I imagined his first discussion about [cough] enjoying his body - I figured we had years and years before that!
Finally, we got a good shot of his face. He looked right at us, removed his hand from his mouth, and stuck his tongue out at us.
I kid you not. I have witnesses!
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I'm home! I made it!
Really - everyone who said the anticipation was the worst part was totally right. Still, I took half an Ativan, and sure, my uterus went into seizures when the needle poked through, but Jay had me count backwards with him, and that always works for me. I didn't cry until it was over and I saw the picture of monkey on the ultrasound screen. He was okay and I was okay, and that was emotional enough for me.
Even weirder? She showed me the vials of amniotic fluid, and I was like, "Oh my god - that was touching our baby!" It sounds gross - but it had touched him, something we won't do for months. Yes, I got sappy over a vial of what's essentially baby pee and other gook. :-)
Now the waiting game begins.
I know you're dying to know the name, but that's such a long post and I'm so tired. Nap first, and then the name. I promise. :-)
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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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The ultrasound wasn't as happy as we were hoping for. We now have an appointment Monday with a pediatric cardiologist for a fetal echocardiogram.
It'd just be really, really nice to go two weeks without some sort of test. I'm tired of hearing, "We're worried about...." - this time, his heart. Something about mitral valve and something else - it all went over my head. Luckily, Jay absorbed it all, but I still can't process it when he explains it to me.
Our genetics counselor still sucks. I think she gets a bonus for every amnio referral she makes, because she's pushing us real hard. She called this afternoon, after the ultrasound, and within three minutes I was sobbing. I had to hand the phone to Jay; "The signs are pointing to Down's Syndrome" just wasn't something you should say to someone over the phone. The fetal specialist said it could be a sign, it could be something else. They should have left it at that.
Maternal fetal specialist. Genetics counselor. Pediatric cardiologist. Any other specialists we should know about?
We got a good picture of him, his profile. He's beautiful - little lips, nose, hand. But for all that I love in it, it also makes me sad and scared to look at it. I want to believe it's just a series of random problems - the single umbilical artery, the positive quad panel, the concerns with his heart - but I just don't know what to think. I want to stay positive, I want to feel safe loving him, I want to hope that maybe they just couldn't get a good picture today, but I'm just scared. I'm scared and I'm tired and I'm tired of worrying and I just want him to be okay.
And to think - my biggest concern was that I'd gain lots and lots of weight and that I would never be able to go to dinner alone with my husband again. It all just seems to silly now.
Yeah... so that's where we're at.
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