Too many doctors' appointments

When Magnus was released from the hospital last Thursday, they told us that we would need to bring him in to the pediatrician's for twice-weekly weight checks, which sounded reasonable to us. What we didn't realize at that time was that since it was the week before Christmas, and short notice, the only place we'd be able to bring him was the pediatric Urgent Care clinic. As I mentioned before, our first appointment was last Friday, and they told us that since the clinic was only open Monday-Wednesday this week, we'd have to bring him back on Monday and Wednesday. And we had a cardiology appointment on Tuesday.

Anyway, we dutifully attended our appointments on Friday and Monday, but each one took three hours. An hour's wait in the waiting room with a bunch of sick kids. Then waiting to see the nurse and answering a million questions. Then waiting to see the doctor and answering the exact same questions. And then on top of that, his weight was down at Monday's appointment, but they weighed him at a different time of day on a different scale than they had on Friday. The inaccuracy of this measurement was further confirmed when the home health care nurse weighed him at our house later that same day and he was the same weight as on Friday.

So, at our first cardiology appointment yesterday (where they weighed him yet again on yet another scale at yet a DIFFERENT time of day...he was up again), the doctor told us we should just rent a baby scale and weigh him at home, so that is what we're doing. And we don't have another doctor's appointment until January 4th, when we go back to the cardiologist!

The cardiology appointment went fine, they didn't really do much since he'd been discharged from the hospital so recently. The cardiologist did mention, though, that we'd probably need to schedule Magnus's second surgery soon. He won't have it until he's about 6 months old, but I guess Dr. Azakie's schedule gets filled up well in advance. It's pretty terrifying to think about his next surgery coming up when he just finished this first one. I always knew we'd have to do it eventually, but having a date set will make it a lot more real.

Life at home

Magnus has been home for three days now, and maybe it's just because I got a solid 6-hour block of sleep last night, but things are seeming more manageable all the time. We are lucky that Magnus is, other than his health issues, such an easy baby. He rarely fusses, and when he does, it's easy to comfort him.

The tricky part is that he has to be fed every three hours around the clock, and each feeding takes about 45 minutes. He still has his NG tube in, but we start out by either bottle or breast feeding him as much as he will eat, and then he gets the rest through the tube, which takes a while. Plus, in addition to breastfeeding, I am pumping every couple of hours. And then there are his medications, although luckily we only have to give those three times a day.

I am hopeful that the feeding regimen will become less onerous before too long. At the hospital, they told us to stick with what they'd been doing for at least a week, which we are doing, but I think eventually we will try harder to wean him off the tube. He hasn't made much progress with taking larger volumes by mouth, but I think that's just because the volume of food we are giving him through the tube every three hours is so large that he's never really very hungry. The most important thing is that he continues to gain weight, which he seems to be doing. He's puking a lot less at home than he was in the hospital, and at his pediatrician's appointment on Friday, he was up 70 grams from his discharge weight (which may just be due to a difference in scales, but we were happy, nonetheless).

Anyway, between all that, we are pretty busy. Luckily, my parents are here helping out, so that has been a huge help, allowing us to do things like go to the grocery store and take showers! We even finally went out and got a Christmas tree this morning.

We are home!

And so far we are one diaper change, one feeding, one puke, and one dose of meds down.

+10 grams!

Well, the title there says it all. Our boy was up 10 grams at his weigh-in, which means he's gained enough to go home tomorrow! Of course there are still a few more hurdles he has to clear in order to actually get discharged, but we're feeling pretty confident, and I know the nurses and doctors are also trying to do everything they can to get him home.

Magnus has certainly held up his end of the deal. The nurse practitioner told us this morning that if he gained anything today, he could go home. We were pretty tense in the moments leading up to the weigh-in, but he was triumphant. And then less than a minute after he was weighed, he had a large bowel movement...one that might have weighed as much as 10 grams. But it doesn't matter, he officially gained!

Halfway there

So yesterday, as I had predicted, thanks to his 3 puked-up meals, Magnus did not gain any weight. In fact, he lost 5 grams. But then today he gained 40 grams! We've been told that he has to gain 20 grams a day for two days in order to go home. Since he did double that today, we were all joking that they should let us go home tomorrow. That's not going to happen, but I'm going to try to make the case that if he gains anything, or even maintains that gain tomorrow, that's the same thing as gaining 20 grams a day for two days, and they should let us go home on Thursday.

We're keeping our fingers crossed!

The last obstacle to going home

Magnus is still doing great in every way except one: he's not gaining weight. This morning, his nurse practitioner told me that they want to see solid and consistent weight gain for two days before they let him go home. I was hoping that today would be day one of that, but given that he has puked up most of his last three bottles, it's not looking very likely. So frustrating! But of course, growing and gaining weight are important. We agreed to put him back on the fortified breast milk, but they're adding less of the fortifier than before (and the puking started before he went back on the fortified milk). At this point, I'll try anything to get him to gain weight!

Mom and dad are ready

Today was a pretty ordinary day for Magnus, but a big step for us: we put in Magnus's new NG tube all by ourselves. It was actually a lot easier than I thought it would be, and I think the part the little guy actually hated the most was having us stick all that tape on his face to hold it in place!

So this pretty much means that all our parent education is done. We know how to insert the tube. We know how to give his medications and food and to check placement of the tube, and to flush it after we put anything in. All we need now is for the little guy to get clearance to go home! They're putting him back on bolus feeds tonight, and assuming that he tolerates that OK, we're hoping to get the all-clear to go home on Tuesday. Conveniently, my parents are coming to town on Monday, so it'll be nice to have those extra hands around for our first days at home!

Another good day

Magnus continued to breathe and eat well today! In fact, he's doing so well that it's awfully frustrating to see that they're moving forward so slowly now. But of course it's worth it if this means no more setbacks and going home early next week.

There was some tangible progress today, though. Magnus went off his supplemental oxygen (again) and did extremely well. He also had 4 big feedings, one of which was a new personal best for him (45 ml). And now he's back on all oral medications and nothing through his IV. But they're not going to make any other big changes through the weekend, probably, because they want to wait and see how he does with what's been done already. So I guess we just have to be patient, grrrr.

Doing better again

Today was another good day. Magnus seems to have conquered his fast breathing issues, and now he just has to master the art of eating. He did OK with the 3 bottles he drank today, but still has to work on building up his stamina a bit.

It looks like now the plan is for us to go home sometime early next week. They think that the reason why he had some problems last week was because they pushed the feeding too hard, so we're going a bit more slowly this time. Tomorrow they're going to transition him back onto the oral diuretic (as opposed to the IV one) and then on Friday he goes back on all bolus feeds (as opposed to the continuous feeds he gets at night now). If he does OK with that for a few days, we can go home! We were a little disappointed to hear that they're not planning to send him home until next week, but the upside of that is that I think there's a decent chance he'll be able to take in all his food by mouth by then and we won't need to go home with an NG tube.

Magnus also got all his stitches out today and the pacer wires that were in his chest. He did not enjoy that very much, but he looks great and his scar is surprisingly minimal. Of course, he still has at least two more chest surgeries in his future, but scar #1 doesn't look too bad.

Some progress

Today was not a bad day, but it was very long. This morning, some of Magnus's bloodwork showed that he was anemic, which may be one of the reasons why he's been having some breathing problems. So, this afternoon, they decided to give him some blood.

However, when they started putting the blood into his IV, it started leaking everywhere. The boy had destroyed yet another of his IVs and had to have a new one put in. And just like last time, it was quite an ordeal for all of us. It took three sticks with the needle and nearly an hour of work to get his new IV in. So, that was probably the most difficult part of the day.

Today's good news was that since going back to straight breastmilk, Magnus has resumed doing very well with the bottle. An occupational therapist came to watch him feed this morning to make sure he wasn't aspirating or having any problems, and she said that he did just fine. Later, he took 40 ml from his bottle, which was a new record for him. So here's hoping he continues to make fast progress with the feeding.

Tweaking

So yesterday, Magnus continued to have issues with fast breathing and what seemed to me to be signs of GI problems (throwing up, and generating a poopy diaper every hour or so). So, this morning, we talked with his nurse practitioner, and she agreed to put him back on straight breastmilk, but she's putting him back on continuous feeds overnight so that he gets in enough calories. She also increased the dosage of one of his heart medications. They implemented those changes mid-morning, and by this afternoon, it seemed like one or both of these things was working. His breathing became more normal, and he was much less fussy than yesterday, and seemed to be on a much more normal pooping schedule. He also started taking milk from the bottle again, which he had basically stopped doing when he was getting the fortified stuff. So, hopefully, all that will continue to be the case.

Being on continuous feeds is a bit of a step backwards for him, but at this point, I am happy to do whatever will help him gain weight and get out of the hospital! This morning, I was thinking about how when Magnus first had his surgery, it seemed so scary that one day we would have to bring him home from the hospital and take care of him ourselves. Now it doesn't seem like any big deal, and I can't wait for us to get the hell out of there!

2 steps forward, 2 steps back

Magnus is still doing fine, but when I came in this morning, the nurse said that they'd been a little concerned that he was breathing faster than usual. They think this is due to one of two things: either the oral diuretic he has been taking for the past couple of days is less effective than the IV diuretic he used to be on, or he may be having reflux issues. Personally, I think it is the latter, and I suspect it may have something to do with the fact that until yesterday, he was just getting straight breastmilk, but then yesterday they started giving him breastmilk with human milk fortifier added to it to increase his calories.

I say this because when he was just getting breastmilk, he was steadily increasing his feeds with every meal and not throwing up at all and just spitting up minimally. Then, when they switched him, he started taking in much less milk orally and had a pretty good puke last night (he got his dad's shirt pretty good).

Anyway, for today, the plan is to switch him back to the IV diuretic, to give all his feeds through the NG tube, and to treat him with reflux medications. However, I'm hopeful that once he gets back to normal that we can try him on plain breastmilk again and see if that solves the problem.

It's disappointing, because originally we had talked about trying breastfeeding today, and because this probably also means another day or two in the hospital, but the important thing is that he's still doing fine, and luckily, I think the doctors were inclined to accept my suggestion that the fortified milk might be the problem.

Bottle feeding

Yet again, Magnus achieved all the goals his doctors set out for him today. He's now on all oral medications (though he does have one peripheral IV still in in case he needs it, but that's all!). He did just fine with bolus feeding. And he had his first two bottle feedings today!

As we'd hoped, he did really well with the bottle. The first bottle, they gave him 18 ml of milk, and he was able to drink 15 ml of that in 10 minutes. He only spit up minimally, and generally seemed to tolerate it well. For his second feeding, they gave him 20 minutes, and he was able to drink 25 ml. I think he could have done even better were it not for the fact that he really didn't sleep at all this afternoon, and then he JUST fell asleep before feeding time. But again, he tolerated it well, with minimal spitting-up. Right now they're going to keep him on continuous tube feeding at night just to make sure he continues to gain weight quickly, but he'll be doing 3 bottle feedings during each day. Hopefully tomorrow he'll do even better. The goal is for him to be able to take in 60 ml at each feeding.

Graduation

As of around 11 this morning, Magnus is no longer in intensive care for the first time in his life!

Since he no longer had his chest tubes, they decided to transfer him to the step-down unit this morning. Things are happening fast. They've been increasing his feeding rate every three hours, and the plan is still to try a bottle on him tomorrow. They told us that most kids who have this surgery do go home with an NG tube, but I am holding out hope that he might be able to feed well enough without one.

Magnus was also supposed to be switched from his high-flow nasal cannula (that blows air in his nose to help him breathe) to a low-flow cannula, but while we were waiting for the respiratory therapist to make the switch, he decided to just pull out his cannula on his own, and did fine with it, so he's just breathing room air now.

He's also getting transitioned off all of his IV meds and onto oral medications. They're hoping to have that all done by tomorrow, and then the only line he'll have left will be his NG tube.

And with all of this happening, they're even starting to talk about when he might go home. Someone said to us that maybe Wednesday might be the day, which would be kind of funny because that's his original due date, December 9th. We're thrilled that it looks like he'll be home soon, but of course it's also a bit daunting...not the least because this means we have to figure out how to install his carseat!

Fussy day

Magnus continues to make progress, but today was kind of a rough day for us. Maybe it's just that now he's getting food, he has the energy to be fussy, but he was super unhappy all morning, and was even fussing in his sleep! On top of being fussy to start with, he also had to have his IV line replaced this morning because he wiggled so much he ruined his old one. Unfortunately, that took a lot of poking and prodding followed by 2 tries with the needle (the first time they got it in, they realized it was in an artery and not a vein). Then we had to move rooms because someone else needed the one we were in.

Like I said, though, he is making progress, and he got his chest drainage tubes out this afternoon! He seemed to settle down a little after that, and I'm hopeful this will make for a happier Magnus in general, because all the nurses were saying that chest tubes are really uncomfortable to have in. They certainly don't look pleasant.

They also doubled his feeding rate this morning. He's still only at 4 cc's per hour, which is not much, but they're hoping to ramp him up to 18 cc's/hr by tomorrow. There's also been some talk about weaning him off his high-flow nasal cannula.

So, little by little, he's getting unplugged! I just hope he gets to enjoy it a little more now.

Food!

Magnus finally got food in his belly for the first time ever today! Unfortunately, it was through an NG tube, which he really did not enjoy having placed, but they want to start him out on slow continuous feeds to make sure he tolerates it OK. He's getting it very slowly, 2 cc's per hour, but I'm thrilled that he's finally getting to use some of the breastmilk I've been storing all this time! If he does OK with the continuous feeds, they're going to try him with a bottle on Friday, probably.

Magnus also got his intracardiac line out today, and will hopefully get his chest tubes out tomorrow.

I also got to hold him again for a while today, which was very exciting! We couldn't do chest-to-chest yet because he's still got his lines in, but it shouldn't be too long now.

Sorry my recent updates have been so cursory, but I have been spending almost all my time at the hospital, and when I'm home, I'm trying to squeeze in eating, sleeping and pumping, so not much time left over for blog posts!

No food today

We had hoped that Magnus might finally get to eat today, but apparently they are still a little worried about his lactate levels. I don't fully understand the details of what that means and I lack the energy to look it up, but basically, they want to make totally sure that the circulation to his gut is good enough for him to handle food before they try feeding him.

However, on the positive side, his oxygen saturations are looking much better today than they did yesterday. They were OK yesterday, but he had a couple of fussy spells where they dropped way low into scary territory. He had a couple crying jags again this morning, but this time his sats stayed in a good range. On a related note, I think we can safely stop worrying now about any serious damage to his vocal chords!

Still doing well off vent

Just a quick note to say that Magnus seems to be doing really well off the vent so far. They have a nasal cannula on him to deliver oxygen if he needs it, but he's spending most of the time with that set to the same oxygen percentage as room air. We might get to hold him later today, but right now they're still trying to make sure he's doing OK without messing around with him too much. He did have some funky tests this morning that generated some talk about putting him back on the vent, but later test results were OK, so we're hoping he stays off the vent.

One of the things that can happen to babies who have this surgery is temporary vocal chord paralysis, which can interfere not just with the voice, but also with feeding. Magnus's cry is definitely muted right now, but they think it's just swelling from having the vent in, because he is able to make some noise. Hopefully by tomorrow he'll be back to his old self.

We have started taking pictures of him again, so hopefully we can get some of those up tonight or tomorrow!

Tube is out!

I just woke up and called the hospital and they just took him off the vent! They are going to watch him very carefully for the next few hours to make sure he does OK, but so far he seems to be doing well. Keep your fingers crossed that this continues, especially since last night, Magnus was starting to make it clear that he did NOT like the tube. He was starting to chew on it, and to peel the tape off his face with his little fingers (this kid seems to have some pretty awesome fine motor control).

Assuming he does OK, the next thing to go will be his chest drainage tubes, probably on Monday.

Still doing well

This morning when I came in to see Magnus, his nurse told me that they were going to try to extubate him today, but then later the doctors said that they thought they'd wait until tomorrow morning. So, I was excited and then disappointed, but tomorrow morning is still pretty fast, and if that goes well, we should be able to hold him again soon AND to finally get some food in his belly for the first time since he was born!

Yesterday's heavy narcotics have now worn off, and Magnus is back to his old self: grabbing onto our fingers (his night nurse noticed that he loves to grab stuff, and so he made him some "dumbbells" out of rolled-up bandages to hold onto when mom and dad's fingers aren't around), opening his eyes and looking around, and occasionally fussing (although overall he's being amazingly mellow and tolerant about everything).

So anyway, everyone think good extubation thoughts tomorrow! I'll try to keep you posted on how that goes.

The lights are on, but you're not home

Magnus's chest closing went ahead as planned this morning, and the doctors and nurses were very pleased with how he handled it. I guess they gave him a massive dose of narcotics when they did it, because he was pretty much totally out of it all day. But all his vital signs looked good. The mood in his room now is palpably more relaxed than it was on his first day in there.

Now, the next step is to wean him off the ventilator. One of the doctors told me today that that would probably happen within "a few days." Even though he's making good progress, it can't happen fast enough for us. We both miss holding him so much!

Closure

Just called the hospital, and they're getting ready to close his chest right now. The nurse said she thought it would be done in the next half hour or so. She said he had a really good night and his blood pressure and heart rate are still looking good. I have a few errands that desperately need to be run this morning, but plan to get over to the hospital as soon as I can to see him!

Corner #1

Magnus has been doing really well since last night. They are gradually turning down his ventilator settings, and they've been able to treat him with a diuretic to bring down the swelling so his chest can get closed tomorrow. He hasn't been doing anything scary (like having a fast heart rate), and everyone is very pleased with his progress. He's also a lot more awake today, as they have turned down his sedative dose. He opens his eyes and looks around, and waves his arms in the air, and will grab your finger with his hand if you give it to him. He doesn't seem uncomfortable, though. The only time I saw him make "crying eyes" (he can't actually cry because he's on the ventilator) was when one of the doctors opened his diaper to look at his PICC line, and I think that was just because he knows he doesn't like diaper changes, not because he was in pain.

Iggy and I received several Thanksgiving invitations, but I think we're just going to do our own thing today. I know that I would feel weird about going to a social gathering today. We'll just have an extra big Thanksgiving next year.

Hanging in there

Not much change to report in Magnus's condition today, which is pretty much as expected. It looks like they are probably going to close his chest on Friday. The big excitement today was that they managed to put a PICC line in him after several failed attempts that unfortunately left him looking even more like a pincushion than he already did. But it's good that they finally got the line in.

Iggy posted a few more videos of pre-surgery Magnus over at Youtube today. We will not be posting any photos or videos of him, nor are we taking any, in his current state. It is NOT something we want to remember.

Thank you

Just called the hospital again to check in and Magnus is still doing well. He had one short period where his heart rate went way up and has had to be treated for low blood pressure, but these are the types of things they expect to see in a baby recovering from the Norwood procedure.

As I mentioned earlier, Iggy and I spent the night at home, catching up on sleep and on everything else, and one of the things on my list is trying to somehow acknowledge all the love, generosity, and support that has been heaped upon us in the past week. Our families and friends have been so amazing, with special gratitude being due to our friend Bobbi Cesare, who happens to work at the hospital and who, among other things, brought us lunch in the waiting room yesterday when we were waiting to hear how Magnus's surgery had gone.

We have also been tremendously grateful to all the wonderful doctors and nurses who have taken such good care of Magnus. It is a cliche to say "the nurses are amazing," but really, every single one we have dealt with has not only been tremendously skilled and knowledgeable, but also kind, friendly, and understanding. Again, here, I want to give special acknowledgement to nurse Ayanna, who took care of Magnus on his last two nights in the intensive care nursery, and who came down to the OR with us yesterday morning to see Magnus off for his surgery. She hugged us, and tried to make us feel like everything was going to be OK.

Anyway, we are far from through with all of this, but I feel bad about not being very good about answering all my e-mails and just wanted to thank everyone for everything!

Quiet evening

I just called over to the hospital to check on how Magnus is doing, and his nurse said that he was doing well, and that they'd been able to turn his ventilator down by a few settings, which I guess is good. It's progress!

Iggy and I are having a sorely needed night in at home and taking care of stuff that has literally piled up around the house. The nurses said that although Magnus can't wear any clothes yet, we can feel free to bring in cool hats and blankets for him...two objects that we of course have none of, so I might try and look into that tomorrow.

Iggy is planning to make Magnus a new name sign for his crib tonight, so for now, the only "custom" thing we have in there with him now is this plush toxic mold that Iggy found at the UCSF bookstore. We have decided that the toxic mold is watching over him and keeping him safe! Yeah, we're perverse like that.

He's out!

Dr. Azakie just came to see us, and he said the surgery went well!

We're still not out of the woods, though. His chest is still open and we'll have to wait a day or two for it to be closed. The next step after that is removal of the breathing tube. He's still in very critical condition.

He's still not up on the floor, but when he is, we'll get to see him.

By the way, neither of us has any cell phone access in the room we're in, so if you're waiting for a phone call from us, we'll try to call you later, but it might be a while.

Still down there

They haven't told us anything yet, but someone just came in the waiting room and sent home the family that was supposed to be Dr. Azakie's second case today, because I guess Magnus is still down there, and it's taking longer than expected.

He's off

Just a quick note to let everyone know that Magnus went in for his surgery as scheduled. The team said that they will NOT be calling with any updates. We will be heading to the waiting room at around 1 p.m., as they told us that that was the absolute earliest we could expect them to be done, but it could be significantly later when we hear anything. They said they have wireless there and I'm bringing my laptop, so I'll do my best to update the blog as quickly as possible when we hear.

Good evening

Iggy and I had an awesome evening with Magnus. He was doing really well, and we both got to spend hours holding him and taking a ton of pictures. Now we're home to catch a little sleep, and we'll be back at the hospital before 6 to see him off to surgery.

It's definitely tomorrow

The consent forms are signed, and I've spoken with representatives for the surgeon and a member of the anesthesiology team. Tomorrow at 7 a.m., Magnus will have his surgery.

Today it's starting to become more evident that Magnus really needs this surgery. His heart function is starting to decline, as expected, and his O2 sats are much lower today. They're now in the range of what they expected for him, but it's still scary to see the monitors beeping because his oxygen is too low. Once it went so low that they put an oxygen mask over his face for a few seconds. Nobody there seems worried, and at this point he doesn't have too much longer to go before his surgery anyway, but one of the neonatologists told me this afternoon that they might put him on some additional medications today to help his heart-lung function.

I am taking a brief break at home right now, but Iggy and I are really trying to squeeze in as much quality time with our little guy as possible today, because he's going to be completely sedated for at least the next couple of days.

The nurse practitioner who works with Dr. Azakie talked to me for a long time about exactly what will happen and what the possible complications are, which was very helpful.

The plan is that he's going to stay in the intensive care nursery where he is right now until sometime between 6 and 7 a.m. tomorrow, when the anesthesiologists will come to get him. We'll have to say goodbye to him then, and then they'll sedate him, put in a breathing tube and some other lines, and start the surgery. The procedure itself is estimated to take between 4 and 6 hours, but they told us that the earliest he would be in the pediatric cardiac unit was around 1 p.m.

She told me that they are usually able to close the chest after the surgery, but some babies get so swollen that they have to put this off for a day or two (or more, as I know from reading blogs about other people's experiences). A day after the chest is closed, the next step is the removal of his breathing tube. In some cases, the nerve leading to the diaphragm can be paralyzed during the surgery, and if this happens, he would have to undergo another, much more minor, surgery to fix his diaphragm before the tube could come out. However, she told me that this happens in "less than 10% of cases."

After this happens, he can start to be weaned off his sedatives, and will get an NG tube, and can start to actually take in breastmilk, which is exciting! And within days of that they will try to see if he'll take a bottle. Another complication that can arise from the surgery, though, is that the nerve leading to the vocal chords can be damaged, leading to vocal chord paralysis. This would lead to temporarily losing his voice, which is not such a big deal, but can also cause feeding problems. There is no treatment for the vocal chord paralysis...it just resolves on its own in 4-6 weeks.

Another thing that then has to happen is the removal of tubes that will be draining fluid from his lungs.

She told me that the shortest time anyone has ever been in the hospital after a Norwood at UCSF was 10 days, and that that has happened once or twice. The majority of babies are in there for 14-21 days after surgery. We've been hoping he'd be home by Christmas, and if all goes according to plan, it looks like that will happen.

Scary stuff coming up

This morning, for the first time since Magnus was born, I cried. I think it finally just hit me how terrifying it is that his surgery is going to happen either tomorrow or Wednesday.

I was telling one of the doctors this week that at the height of my labor pains, I had the urge to pull out my pitocin IV and just run away! And I kind of feel the same way now. I know it would be deadly for him, but a part of me just wants to go to the hospital, pull out all those monitors and lines and run away with my sweet boy and hug him. He seems so healthy and happy now, and I know he will be weaker after surgery. And I don't know how much weaker and for how long.

I know it has to happen. And the sooner it happens, the better it will ultimately be for him. But I still just want to run away with him and keep him like he is now forever.

Out of here (one of us, anyway)

Just a few quick updates:

-I've been officially discharged! Of course, I'm still going to be in the hospital most of the time anyway, but I'm very excited to have the option of going outside, wearing real clothes, etc! Basically, I left the house on Tuesday morning for a non-stress test, and haven't been home since, so I'm very excited to at least go through my mail and water the plants!

-Dr. Azakie stopped by Magnus's bedside this morning (he is quite a guy...not only does he never get sick, he also works 7 days a week, apparently!) He said he wants to try to schedule Magnus's surgery for Tuesday instead of Wednesday if they can make that work. They're going to let us know definitively tomorrow. The reason they want to do this is just because he's doing so well right now, and every day that goes by is another chance for that to not be the case. I totally agree that sooner is better than later. Also, I would feel a little better about his first post-surgical day NOT being a major holiday (Thanksgiving).

-We have a totally cool nurse today who let me have skin-to-skin contact with Magnus for close to an hour this morning! He really seemed to like it and of course I did, too! We're going to try to do more of that today, definitely.

I'm on the mend

I had a pretty rocky day yesterday between the preeclampsia, the nasty drugs they were giving me for the preeclampsia and having hardly slept in 3 days. But last night, I manged to get a fairly good night's sleep, they pulled out all my IVs just after midnight, and I'm feeling like myself again.

I just now got back from talking to Magnus's cardiologist and surgeon about surgical options. They said that basically they thought he was a good candidate for either surgery, but that given their strong track record with the Norwood, they thought that was the more conservative option. That's been my feeling, too. We don't have to decide until the last minute, but I feel pretty sure we're going to go the Norwood route. I think I mentioned the other day that Magnus's surgery is scheduled for Wednesday, and that is still the case.

Plans

Iggy and I spent a few hours with Magnus in the NICU this evening. He had his eyes open for much of the time we were there, and I tried to get some good pictures, but couldn't, really, because the lighting was dim. Iggy also got to hold him for the first time, which Magnus seemed to like!

We also finally got to talk to Magnus's cardiologist while we were in the NICU. As we already knew, he told us that different people had spent the day taking lots of images of Magnus's heart and other aspects of his anatomy. Tomorrow, the plan is for everyone to get together and come up with an official recommendation (basically Norwood vs. hybrid) as to how best to proceed based on his particular case.

We also learned that as of now, he is tentatively scheduled for surgery next Wednesday, the day before Thanksgiving.

As for me, I was originally slated to be liberated from my IVs 24 hours after birth, but as fate would have it, I started to develop some pretty severe swelling over the course of the evening and into the night, and a few other symptoms which made them more worried about my preeclampsia. So, unfortuately, I am back on the IVs for another 24 hours (or more) which is a pretty huge bummer for me. The swelling is also pretty unpleasant...my ankles are so swollen now that it's getting to be hard to flex my feet enough to walk! Anyway, I really, really, really hope that this resolves soon. I am DYING to take a proper shower, to wear normal clothes, and to walk around without being tethered to a pole!

Several people have started to ask us about visiting. We had told some people Thursday that today (Friday) might be a good time to come visit, but given my own complications, I think it might be best to hold off for another day. However, to let people know for when the time comes, visitor policy in the NICU is pretty strict: basically, he is restricted to 2 visitors at a time, and one of them must be a parent. Obviously, we are asking anyone who is sick, or who has been around sick people, not to visit. We also ask that people who come to see him have had a flu shot. Hopefully some of you will get to meet him soon, but they will probably have to be short visits, and nobody will be able to visit him in groups due to NICU rules.

I am sorry to have to be such a stickler about this, but in the meantime, we'll try to post as many photos and videos of him as possible to tide everyone over! Iggy has set up a youtube account for Magnus, and I'm trying to post plenty of pictures to Flickr.

Better than expected

Needless to say, we had a lot of worries about what kind of shape Magnus would be in when he made his appearance on the outside. But so far, he seems to be doing better than we ever could have hoped. At birth, he was 6 pounds, 8.5 ounces and 20 inches long, which is not huge, but certainly a respectable size. Even more impressively, his Apgar scores at 1 and 5 minutes were 8 and 9. He is breathing just fine, and his O2 sats have been in the upper nineties. I was hanging out next to Magnus's crib in the NICU this morning when the neonatologists came through doing rounds, and I got to listen in. Many of them remarked that they couldn't believe that he had a heart defect, and that if he hadn't been diagnosed in utero, you would never have suspected anything was wrong with him. Of course he still has a serious congenital heart defect, but the fact that he is so otherwise healthy and strong is a wonderful thing.

Today has been a whirlwind day. I've gotten about two hours of sleep, but have mostly been hanging out with our boy, talking to doctors, and experiencing lots of firsts, including getting to hold our little guy for about 15 minutes this morning, changing his first impressively meconium-filled diaper, and pumping breastmilk (somewhat alarmingly, in my first attempt at this, the bottle attached to my left nipple filled with colostrum, while the bottle attached to my right nipple began to fill with blood).

I also took a bunch more photos of Magnus (which you can see on my Flickr account) and the more I look at him, the more I think he looks exactly like his dad. He has the same nose, the same large and funny-shaped toes, the same (lack of) eyebrows, and even makes a lot of the same facial expressions! He does, however, have my lips.

Magnus Ulysses V. has arrived!

Baby was born vaginally wiggling and crying at 1:49 this a.m. and seems to be doing well so far! Pics and stats to follow soon. Iggy got to hang out with him a bit and take some photos while I was being stitched up and passing the placenta, but I have barely gotten to see him yet. I'm hoping that will be rectified soon!

Another update

Well, I had a bit of a rough morning. They cranked up my pitocin every hour or two after my water broke, and by 5 am I was having rip roaring contractions that were less than 2 minutes apart. This intensified throughout the morning until around 10 a.m., at which point my contractions were literally off the charts (they were maxing out the contraction monitor) and typically less than a minute apart. On a pain scale of 1-10, every single contraction was a 10+. So, if you tried to call me or Iggy this morning, that's why we didn't answer the phone!

While I had been firmly committed to a natural labor and cocky enough to expect that it would be no problem for me to do so, I was reaching my limit. So, I asked the doctor to check my cervix, and the verdict was that we were still only 5 cm dilated (halfway there, but only 1 cm of progress in about 4 hours), but the reason why I was having so much pain was because I was having back labor (the baby's face is pointed towards my belly rather than towards my back) and his head is really low down in my pelvis. Knowing that I was facing several more hours of labor, I knew I wasn't going to be able to make it without some kind of analgesia.

At first, I tried inhaled nitrous oxide, which is commonly used in Europe as a labor drug, but is only available at a few hospitals here. It was immediately obvious to me that it wasn't going to do much for my pain, and it was making me loopy to boot. So, I got an epidural, and all the pain magically went away, along with all sensation in the lower part of my body.

In addition to the back labor, I think the other reason why I was having so much pain is because they turned my pitocin up too high. In addition to my problems, the doctors noticed that the baby's heart rate was going down with each big contraction and wasn't recovering like they would have liked. So in addition to my epidural, they also completely turned off my pitocin and let everyone rest and recover for an hour or so. This was greatly appreciated, as I only got about 2 hours of sleep last night.

Now we both seem to be recovered from the first round and the pitocin is back on again although I don't seem to be contracting again yet. So, I think we're still expecting the little guy to arrive today, but it will probably be early evening at a minimum, I think.

Labor update

Well, laboring without drugs turned out not to be in the cards for me. They were worried enough about my blood pressure that they started me on Pitocin shortly after "ripening" my cervix with a Foley catheter. The Foley took me from 1.5 cm to 3 cm in about 20 minutes. The Pitocin only took me another 1 cm over the following 5 hours with some rather unpleasant contractions. I finally managed to fall asleep around 1 a.m., and then my water broke around 2. I fell asleep again after that and now they're upping my Pitocin again in hopes that it'll really get things started. So far I'm doing OK pain-wise, I think. One of the sucky things about being induced under these circumstances is that I am tethered to an IV pole and fetal monitors so it's hard to get up and walk around and do any of the things they told us are good to do while laboring in our childbirth class. But so far it's not too terrible. I am mostly just looking forward to the time when I can urinate without having to disconnect myself from anything!

Here we go

In the past two days I've suddenly developed blood pressure issues which are likely due to preeclampsia. And so I'm here in the hospital and they're about to induce me. One good thing about all the preterm labor stuff is that they think it'll make the induction pretty easy and they might be able to just do it manually and without drugs. Anyway, one way or another, the baby's going to be here very soon!

Still pregnant

I had another OB appointment today, quite possibly my last, although I have another scheduled for 2 weeks from now. I guess we'll see what happens! The most exciting thing that happened at today's appointment was that I was finally able to get an H1N1 shot. So, hopefully the baby will stick around inside long enough to get some protection from that (I guess it takes a couple of weeks to raise antibodies and establish immunity), but I'll be 37 weeks on Wednesday, so I'm pretty much feeling ready any time now.

Medium rare

36 weeks gestation today! And I am thrilled about that, but also full of conflicting feelings. I'm ecstatic that it's looking like we'll have a full-term baby (or pretty close to one anyway), but still uneasy about the fact that we know we'll need a few more miracles in the coming months.

I also can't help but wonder now if all the anguish and stress we have experienced about pre-term labor was for nothing. Going through all this at a time when there is a national debate about the rising cost of health care has definitely been eye-opening. My doctors have ordered tens of thousands of dollars worth of tests to assess my risk of premature birth...a condition for which there is essentially no effective treatment. Did reducing my activity over the past couple of months get us to this point? Maybe. Would I have been better off being oblivious and active? Who knows? It's probably best not to dwell on it at this point.

Because of all the uncertainty we have faced up to this point, I think Iggy and I are both only now coming to the realization that we are actually going to have a baby, and soon! It seems absurd to realize this now that I am 8+ months pregnant and walking around in a hugely distended body, but a couple of months ago, we were told that if our baby was born at 34 weeks, he had only a 20% chance of surviving his initial surgery, and that we'd be lucky to even make it that far. Now that he's bigger, he has a good chance of doing well with his first surgery, although I know the coming months will still bring some sad and scary moments.

A few people have been asking me about baby showers and registries...before we got our HLHS diagnosis, a friend had offered to throw me a shower, but then after we found out, it didn't feel right to celebrate so prematurely. We have registered at a couple of places, but I haven't given the information out, and we haven't really bought anything for the baby ourselves, either. When he's born, he'll be in the hospital for at least 3 weeks, which I figure is plenty of time to buy whatever we'll need to get started. And then in lieu of a baby shower, we're thinking about throwing a welcome home party. We'll definitely be ready to celebrate when we get to that point.

All is well

Today was a marathon day of appointments, starting with a non-stress test at 8:30 a.m. and ending with an OB appointment that was supposed to be at 2:30, but they were running 90 minutes late. In between those, we had a fetal echocardiogram, and an ultrasound to check on the baby's growth, and basically everything went well. The details are as follows:

Non-Stress Test: The baby was very active this morning, so it went fast. He's still practice breathing, amniotic fluid still looks good. They were a little concerned that I had a few contractions (again not perceptible by me), but weren't worried enough to send me to labor and delivery again.

Fetal Echocardiogram: The big thing they were checking here was to see if a structure in his heart called the ductus arteriosus was still open. It's still open, and that's good, because if it weren't, he would be in immediate distress after birth and would probably have to be delivered by C-section. Everything else looked basically the same, and they said there's no reason why we can't have a natural birth. He won't have another echo until right after he's born.

They also told us a little bit more about exactly what will happen when the baby is born. Basically, we'll have a few minutes with him, and then he'll be whisked away and an umbilical IV will be placed to administer the drugs he'll need to maintain his circulation prior to surgery. I was a little surprised to learn that he won't be given anything at all to eat for his first couple of days, but apparently they do that because otherwise there is a risk of the bowel dying due to poor circulation.

Growth ultrasound: The baby is growing normally, and is presently 5 lbs, 8 oz. Interestingly, that is exactly the cutoff for "low birth weight" in most of the medical literature, so I'm glad it's looking like he'll be at least that. They also measured my cervix today even though they weren't planning to, and according to ultrasound, which is the most accurate way to measure, my cervix is still about 1.5 cm and CLOSED, which is the same as it's been for about a month now, and better than what they told me in labor and delivery last week! So, that was good news, that these imperceptible contractions don't seem to be doing anything.

OB appointment: This one was pretty boring, as it basically just consisted of me telling our OB what happened at all our other appointments today.

And that is pretty much it for big appointments! I will still be going in for bi-weekly non-stress tests, and have another OB appointment in 2 weeks, but we are done with fetal echos and ultrasounds, and now we just wait for this baby to come out.

Non-stress test #2 less stressful

I was very nervous that this morning's non-stress test could end up as another trip to labor and delivery, but it actually went pretty smoothly. They had me on the contraction monitor for about an hour and only registered one small contraction, which is nothing to worry about. My amniotic fluid levels still look good, and baby is still practice breathing. The one thing they said they were going to check with the doctor about is the fact that it took him a while to "become reactive," i.e. to get his heart rate up high enough above baseline. I think that might just be because he was a little sluggish this morning...perhaps he takes after his father, who really doesn't like to be awake before 11 a.m. They said they'd call me back if the doctor thought this was a legitimate reason for concern, but I'm feeling pretty good about how things went today.

Another day in L & D

So, this morning started with my first non-stress test. The good news about that is that the baby did great! His heart rate went up and down like it was supposed to, and he was practice breathing like a champ. I also got to see him sucking his thumb and looking super cute.

The bad news was that I was having contractions. Not big ones, I couldn't even really feel them, but they were happening pretty often. "More often than you should be right now," said the nurse. Given all my cervical woes, she decided to check my cervix, and found it to be "very short" and about 1 cm dilated. That in and of itself is not so unusual at this stage of pregnancy, but that is a change from the last time it was checked about 2 weeks ago, and between that and the contractions, they decided to send me over to Labor and Delivery again.

I called Iggy and he met me over there. They attached me to a fetal heart rate monitor and a contraction monitor. I kept having small contractions, and they seemed to be getting closer together. I think we were there for a couple of hours before we saw a doctor, one of the residents, and I tried to get as much information as I could out of her, but she basically told me that they were going to continue monitoring me, eventually do a pelvic exam, "and then we'll decide whether we're going to let you go home or whether you're going to stay and have your baby right now."

Eventually, the attending physician decided that I should be given a drug called terbutaline to see if it would stop the contractions. Luckily, the terbutaline worked great, and I immediately stopped contracting.

They kept me on the monitors for another couple of hours (and I had zero contractions in that time after getting the terbutaline, whereas before I was having them every few minutes) and then did another cervical check to see if the contractions I'd had earlier had resulted in any cervical changes. The doctor said he estimated that my cervix was 1 cm long and still 1 cm dilated, so basically unchanged as a result of the contractions I had today, which was great news.

The less great news is that terbutaline often only works for a few days to delay labor. That doesn't necessarily mean that I will go into labor later this week, but it's a bit more of a concern given the events of today.

So, I guess it's a good thing that I am having the twice-weekly non-stress tests from here on out, because I really didn't feel the contractions I was having this morning, and don't feel confident that I would be aware on my own if it happened again. I am also planning to make a renewed effort to take it easy...I have to admit that oxymoronically, I have been slacking off a bit in my taking it easy. It has not escaped my notice that both this trip to L & D and our last trip there happened during times of intense stress at work. I was supposed to do a really important experiment today, and two of my wonderful co-workers stepped up and took care of it for me, and I owe them big time. So, from here on out, a renewed commitment to relax and try not to get stressed out. Not so easy for me, but I'm going to try!

p.s. A couple of people wrote to me after my last entry to ask if we'd definitely decided on going with the hybrid procedure rather than the Norwood surgery. We haven't made a decision yet, and probably won't until after he's born, as his physical condition after birth may give us some insight into which is the better option.

Meeting

Today Iggy and I met with the social worker in the Pediatric Cardiac ICU to take a tour of the unit (as well as the Neonatal ICU, which is where the baby will be immediately after he's born) and to get a little bit of a better idea of what to expect. The social worker was really nice and asked us some questions about how we were coping with things...her whole job is basically to provide emotional, and to some extent logistical, support for families of PCICU patients.

Seeing the PCICU was intense. It was pretty much what you would expect...lots of little kids and babies tethered to lots of big machines, and lots of nurses.

Our meeting today was pretty short. I was feeling really tired today and was thinking about some stressful stuff I have coming up at work this week, so I didn't have the presence of mind to ask as many questions as I probably should have. One illuminating thing the social worker did tell us was that of the kids who have undergone the hybrid procedure at UCSF, one was in the hospital for two months afterward, and another was in the hospital for seven months. That was pretty daunting, although she did say that the baby who was in the hospital for seven months was "doing great" now. I'm not sure what other issues these kids may have had, but it's definitely something I plan to bring up with the surgeon next time I talk to him. When we met with him before, he did say something about the hybrid procedure potentially involving a longer hospital stay, but seven months is just crazy.

Tomorrow I start going in for twice weekly non-stress testing. The fact that we have gotten to this point is something of an achievement, because the reason they are doing non-stress tests now is because our baby would now be viable if he had to be induced. The flip side of that is that more tests potentially mean that they could find problems which would make them want to induce. But hopefully they won't!

Our next big day of appointments is next Monday. We have a fetal echocardiogram, a growth ultrasound, and an OB appointment all scheduled for that day. Supposedly, this fetal echo should be able to give the doctors a better idea of what condition our son will be in immediately after he's born. I think it will also tell us whether we can just let him come when he's ready, or whether he'll need to be induced so that the necessary personnel can be ready for him if he's going to need immediate intervention after birth.

So, one way or another, we will be getting a lot of information this week. Here's hoping it's mostly good news.

Update

Iggy is doing a lot better today. His fever is gone, and he even went back to work, but wore a mask all day. Giving your clients the death flu isn't good for business, you know!

33 weeks

Today we are 33 weeks along, which is 1 week away from what that neonatologist told us was "the edge of viability" and 4 weeks away from full-term. And I am feeling pretty good about our prospects of making it to full-term, or at least pretty close. I went to a work dinner last night, and the husband of one of my co-workers predicted that the baby would come on November 30th at 10:30 p.m. I'd be plenty happy with that, although my dad might be a bit miffed...his b'day is December 1st and he's been rooting for a 12/1 birth all along!

This was supposed to be a rare week with no medical appointments, but apparently that was not fated to be. On Sunday morning, Iggy woke up with a fever and was feeling pretty out of it. He seemed to get a little bit better on Monday (which is a good thing, because our basement flooded and he had to clean up and move a bunch of stuff out of the water), but by Monday night, his fever was 103F, which is when I started to worry that it might be the flu. This article about a formerly healthy pregnant woman who contracted H1N1 and subsequently spent 5 weeks in a coma and lost her baby didn't do much to ease my mind, either. I had a seasonal flu shot last month, but the H1N1 vaccine still isn't here.

So on Tuesday morning, I spoke with the advice nurse at my OB office. She spoke with both an obstetrician and a perinatologist (a high-risk OB) and both recommended that in addition to avoiding all physical contact with my ailing husband, I fill a prescription for Tamiflu. The OB suggested that I wait to see if I developed symptoms before taking the Tamiflu, whereas the perinatologist said I should take it immediately as a prophylaxis. I knew that Tamiflu hasn't been tested in pregnant women (though it has been tested in pregnant animals) but given the severity of H1N1, the CDC is recommending that pregnant women take it if they think they've been exposed to the flu. I was still on the fence, though, so yesterday, I filled the prescription but I didn't take it.

Then, before I went to bed last night, I took Iggy's temperature and it was up to 104.2F. I made him take some Tylenol and was hoping he'd feel better this morning, but his temperature was still 104.2 and he was having very bad asthma symptoms, so off we went to the ER. To make a long story somewhat more concise, the doctors there determined that he probably has the flu, told me that I definitely should take the Tamiflu, and sent us off with some steroids for his asthma and antibiotics in case he also has pneumonia. They also prescribed Tamiflu for him, though they said it's probably too late now to do any good. Reassuringly, his fever has come down a lot, and I'm hoping he'll be on the mend soon, and of course that I don't get sick, too. The "what ifs" are a little scary, but at the same time, I know that most pregnant women who do get H1N1 end up being fine.

So, here's hoping that week 34 will be a little less exciting.

Boring appointments are good

We're just back from another round of cervical checking and OB-visiting and happily, things seem pretty much unchanged.

Our requisite scare of the day came when the ultrasound tech was unable to find my cervix and had to go get the radiologist so they could scan me together. This happened once before, as you may remember. Anyway, they finally did find it, and their verdict was that it was basically unchanged...same length and still closed, which is excellent.

The OB appointment we had directly afterwards took forever, but was pretty uneventful. Our OB decided that we are not going to do any more cervical length monitoring or fetal fibronectin testing from here on out, which is fine with me, because it just gives me more stress and they can't really do anything for me anyway.

So, the next steps are that at 34 weeks, I start doing non-stress testing, to make sure the baby is getting enough oxygen and everything, and then the following week I have another ultrasound to check the baby's growth, another OB appointment, and a follow-up fetal echocardiogram. That is a lot of appointments. Thank god I work right across the street!

Still hanging in there

Baby is still inside, and I'm still not feeling much indication that he wants to come out any time soon. Tonight is our first childbirth class. It's every Monday for the next 4 weeks, which will bring us right up to the cusp of 34 weeks.

So, things seem to be going OK. It's just really annoying not being able to lift anything heavy.

The implications of fetal fibronectin

A few people have asked me what a positive fetal fibronectin test means. That is an excellent question, and one to which there is not a very clear answer. The manufacturer of the test makes no statistical claims about your likelihood of imminently giving birth after a positive result. In looking around on the internet, it seems that a lot of women are told by their doctors that a positive result means a 30-50% chance of going into labor in the next 2 weeks. Others are told that it's a 15% chance. I don't know where those numbers come from, though. This paper showed that cervical length was a better predictor of imminent labor than fetal fibronectin, and showed that women with a cervix longer than 15 mm (which I still have, barely) only had a 0.6% chance of delivery in the next 7 days.

Both times when I took the test, the doctors who administered it told me beforehand that a positive result meant "nothing." And I guess that's basically true. But I still would have preferred to have a negative result. My OB wants to retest me when I come in for my next appointment on October 12th. It is possible to have a negative result after testing positive. But even a positive result at that point would be a little less scary, because most women will start to test positive at around 33-34 weeks.

So much for peace of mind

Fetal fibronectin came back positive. Definitely not the result we were hoping for, but since the predictive value of a positive result is not clear, we're still holding out hope that he stays in there AT LEAST another 4 weeks.

On the plus side, we passed our final inspection. Still waiting to hear about the car and my sister's baby.

Updated: my sister is having a boy and the car is fine!

Suspense

Today is going to be an eventful day:

-I will get my Fetal Fibronectin results back.

-My sister and her husband go for their 20-week ultrasound and hopefully find out the gender of their baby and get a clean bill of health for him or her.

-We're having the final inspection on our house this morning, the culmination of a major, 15-month-long remodel on our house! There's no reason why we shouldn't pass, but sometimes the city inspectors can be a little funny.

-I'm bringing the car in for its 40,000 mile service today, and hoping they won't find anything unexpectedly and expensively wrong with it.

One thing that should definitely go right today: Iggy hired someone to come and give our house a thorough cleaning today as an anniversary present! That might not sound so romantic, but I can't think of much else I'd rather have right now. We also had a fabulous dinner at the Cafe at Chez Panisse last night, so overall, a pretty excellent first anniversary.

Too much information

Just got back from our OB appointment. Our OB didn't seem too disconcerted by my shortening cervix. We decided to follow up by doing another fetal fibronectin test today (results should be in tomorrow) and scheduling another ultrasound in 2 weeks (on October 12th). This next ultrasound will be the last one to check my cervix, since according to our OB, the predictive value of cervical length monitoring as an indicator of preterm birth starts to go down around 28 weeks anyway.

The other ultrasound results all seemed to be OK. I have to admit that I did get nervous for a second when the doctor told me that the baby was now measuring at the 60th percentile. Because he was in the 70th percentile before! And oh my god, maybe he's stopped growing! Which is totally ridiculous, because those measurements have a wide range of error, and he gained nearly a pound in September, and still seems to be above average. At this point, it seems like every piece of information is a potential source of anxiety, and I'm hugely relieved that we only have one more cervical ultrasound to go. A part of me didn't even want to do the fetal fibronectin test today, but hopefully it will come back negative and buy us another couple of weeks of peace of mind.

Photos

Outside view:



Inside view:

Not great, not terrible

We just got back from our ultrasound. First, the bad news: my cervix is shorter. The tech said she was measuring it at "less than 2 cm" and we could see the measurements on the screen as she was doing them and it looked like they ranged from about 1.5-1.9 cm in different places. For this reason, we had to stick around until the radiologist was consulted to see if we needed to go to labor and delivery again or anything, but the radiologist said that since this is basically the same thing we already knew about, there was no point. This is obviously scary, but not unexpected, as it is normal for the cervix to shorten at this point in pregnancy.

Other than that, everything else we learned today was pretty much good news. While my cervix is short, it's still not starting to open, and the tech said that my amniotic fluid levels look "great" (leaking amniotic fluid is an indicator of preterm labor, so it's good that that isn't happening). The baby is still measuring large for his gestational age at 3 pounds, 4 ounces (typical weight for 29 weeks is 2 lbs, 8 oz, which is about what he was when we went in almost a month ago). They didn't say anything about organ growth...if there are any problems with that, I expect we will hear it when we see our OB on Monday.

We also got some new pictures from the ultrasound and I'll post them later today after we have a chance to scan them.

So, anyway, the shortening cervix news is a little unsettling, but this is certainly not the worst news we could have heard today.

No news is good news?

I wanted to post something because so many people have taken the time to ask after me in the past week or two, but I don't really have anything new to say. We'll be 29 weeks along tomorrow, and while I haven't noticed any signs of going into labor, the signs I had before were only detectable by ultrasound, so I guess that doesn't mean much!

Our next ultrasound is scheduled for this Friday, the 25th, and they're doing a full scan again this time to check the baby's growth as well as measuring my cervix, but we probably won't have the results until our next OB appointment, which is next Monday, the 28th. That Monday is also our one-year wedding anniversary, which is unfortunate timing because I've been stressing out that if we get bad news, it's going to be extra painful to hear it on what is supposed to be a happy day, but it's tough to coordinate the scheduling with radiology and the OB office, and that's what we were able to get. However, if we have good news, that'll be something extra to celebrate.

Overall, I've been feeling fine, other than the typical third-trimester ailments of fatigue and swollen fingers and feet. We made it down to Southern California this weekend for our friends' wedding, and I'm still going to work every day. I need to take some new belly pictures, because I am suddenly huge and last week had someone (a stranger) look incredulous when I told her my due date was still more than 2 months away. "You look like you're ready now!" she said. Thanks, lady! It didn't really bother me, though, because we need this baby to be as big as possible. From the outside, it looks like he's achieving that goal!

Still 2.4 cm!

We had a followup ultrasound and OB appointment today and it looks like my cervix is measuring the same, still 2.4 cm. This is good news, but of course, we couldn't have a doctor's appointment without a scare of some sort, which today came in the form of the first ultrasound technician being unable to find my cervix. He brought in a second technician, who squinted at the screen, fiddled around a bit, and was finally able to find it.

By the way, never in my wildest dreams did I imagine that someday I would be blogging about the anatomy of my cervix. But I suppose my dignity is a small sacrifice to make in all of this. On Tuesday, I told my boss about my fetal fibronectin results. "Oh good, is that a blood test?" he asked. "Um, no," I said, "it's, uh, not a blood test." I couldn't quite bring myself to articulate to him the bodily fluid used for the test, even though my boss is a physician himself. Anyway, I think he got the picture.

Because things look pretty stable, our OB suggested that we do another ultrasound in two weeks, so we have scheduled that for Friday, September 25th, with another OB appointment on the 28th. The OB gave us the option of doing another fetal fibronectin test, too, but I kind of feel like if the ultrasounds continue to look OK, it doesn't really make sense to do the fetal fibronectin, too, especially since I am supposed to be on "pelvic rest," so the less poking and prodding, the better.

More good news

Just got word that my fetal fibronectin test came back negative! That means that I have less than a 5% chance of going into labor in the next two weeks (the doctors told me it's actually less than a 1% chance, but I have seen otherwise online, so I'll be conservative here!).

What does 2.4 cm mean?

As I mentioned earlier, when we spent the afternoon in Labor & Delivery on Tuesday, I was frustrated by the fact that the doctors didn't really tell us much about the implications of having a 1 cm cervix. Since then, I have been poring over the medical literature with little success, but did find reference to one study here. According to that, women with a cervix <1 cm at 22-30 weeks have a mean birth gestational age of 32 weeks. In other words, not so good. In contrast, if you have a cervix <2.5 cm, the mean birth gestational age goes up to 36.5, or almost full-term. Again, all this needs to be taken with a grain of salt, because we're not totally sure today's measurement was accurate, and even if it was, there are certainly women with a 2.5 cm cervix who don't make it to 36.5 weeks. But it was certainly heartening to read that.

It makes me feel especially good, because one of the scariest things about the news they had given us on Tuesday was knowing that short cervix is something that is likely to be a problem in subsequent pregnancies. So, not only was I worried that we would lose this baby, I was scared that we would never be able to have a full-term pregnancy. And again, that fear is not completely gone, but it is much less than it was.

2.4 cm

We went in this morning for our follow-up ultrasound, and both of us were a wreck throughout the procedure. We both knew that the ultrasound technician isn't allowed to tell you anything about your scan, so we endured the entire process patiently and then went around the corner to the obstetrician's office to get the results. I cannot even begin to describe our level of tension as we waited to be seen. Luckily, it didn't take too long for us to be called in.

"I have good news" the obstetrician told us. "They just measured your cervix at 2.4 cm!" We were in shock. At this point, we were both bracing ourselves for the worst, and I know that I was already mentally preparing to schedule the induction and tell my parents to get on the next plane out here. But 2.4 cm! That is still short, and still raises my risk of premature labor, but much less than 1 cm does. 3.0 cm is usually considered the cutoff for having a short cervix, although the obstetrician we spoke to said that he personally considered 2.5 cm to be the cutoff, for what it's worth.

So why was my cervix supposedly 1 cm on Tuesday and 2.4 cm today? Nobody can really tell us. The OB said that he does not think it's a case of dynamic cervix, but rather a case of the previous scan being inaccurate or misread. "The radiologist who looked at your scan today is very well respected," he told us, "he literally wrote the textbook on fetal ultrasound, and it's a great big book...I've got it around here somewhere." Having been in academia most of my life, I know all too well that writing a giant textbook is not necessarily any indication of competence, but basically, the OB was saying that we should trust this scan rather than the previous one.

I asked him if a fetal fibronectin test had been done when we were in Labor and Delivery, and it hadn't. I asked if we could do it today, but apparently, you need to wait 24 hours after having a vaginal ultrasound to do one because the ultrasound gel can affect the results. So, I'm going back to L&D tomorrow to have it done, and should get the results later that day. If the test is negative, it means I have less than a 1% chance of delivering in the next two weeks, which would be fantastic for our peace of mind.

We also have another follow-up ultrasound scheduled for Thursday, and hopefully that will give us some further reassurance.

So, we feel tentatively relieved. 2.4 cm is still not ideal, and we still aren't sure exactly which scan we should believe. But right now it feels better than no hope at all.

In limbo

As you can probably tell from yesterday's post, I was feeling very pessimistic at that time. The doctors had given us a very bleak prognosis, and honestly, while it all seemed horrible beyond belief, I was starting to almost feel a bit of a relief at the prospect of escaping the burdens of the life of an HLHS parent. When I got home from work yesterday, I talked with Iggy and told him that if our ultrasound on Friday showed that things were looking worse, that I wanted to just go ahead and induce labor and get this all over with so we can move on. He agreed that that was the right choice to make.

Today, I still think that induction is the way to go if things start to look worse, but have been researching cervical insufficiency and feel like the picture is a little bit muddier than what the doctors had led us to believe. Yes, having a short cervix does increase your chances of going into premature labor, but it's not clear exactly what those chances are. I have read papers and heard stories from other women with a cervix as short as mine at this stage who did go on to have full-term pregnancies. It's not impossible. And given that our baby is large for his gestational age, I think it's likely that he'd have a better than average chance of surviving the surgery if he were born at 34 weeks.

So, we know what we want to do if things look worse. But what if they stay the same or get better? (From what I understand, cervical insufficiency is irreversible, but some women have something called a "dynamic cervix" where the cervix dramatically fluctuates in length over periods of a few minutes, and it's possible that I have that. I guess they'll check for it in the ultrasound tomorrow). We may be looking at a wait of 8 weeks or more, worrying that I could go into labor at any moment, and putting our lives on hold. We have already cancelled our scheduled and much-anticipated trip to Chicago this weekend to visit friends. In a couple of weeks, we're supposed to drive down to Southern California for the wedding of some very dear friends, and it's looking like we'll probably have to skip that, too. I've quit my teaching job and taken leave from my freelance jobs, and spent most of yesterday at work coming up with contingency plans for other people to take over my projects if I suddenly go into labor.

I have to admit that last night when I was driving home, I found myself almost wishing for bad news on Friday. That would give us a clear answer about what to do. But today, I am feeling at least a little bit hopeful. And although we are potentially facing two more months of hellish uncertainty and putting our lives on hold, I don't know if I could live with myself if I didn't feel like I gave this baby every reasonable chance. And maybe tomorrow we'll know a little more about whether this chance is a reasonable one.

Of course at the same time, I definitely have my doubts that this is the right thing to do. Even if he makes it to 40 weeks, our son's future is far from certain. But if he doesn't make it, we at least want to be able to console ourselves with the knowledge that we did everything we could for him.

Taking it easy

Last night was, as I'm sure you can imagine, pretty horrible, and I only managed to get a few scattered hours of sleep. Iggy was also up all night and finally went to bed around 5.

As with the last round of bad news, we have gotten a lot of wonderful and supportive comments, e-mails and phone calls. Several friends have written to say that they also experienced preterm labor and went on to have good outcomes, but honestly, I have a bad feeling about this. I can feel how low the baby is sitting on my cervix, and it really feels like he could come popping out at any minute. It just doesn't seem possible that he could stay in there for another 8 weeks.

In the meantime, I have to go to work today, but my main goal for the day is trying to minimize my responsibilities to the extent that I can. I need to meet with my boss and decide what projects are essential and who will take them on when I go into labor. I have also been teaching a class, and this morning I called and told them about my circumstances and that I basically couldn't continue teaching. They were very understanding about things and are scrambling to find someone to replace me starting next week. And then I've also been working at a third freelance job, and I guess I need to e-mail them, too.

Even with fewer outside responsibilities, the burden of what is to come seems overwhelming. Unfortunately, none of the possible outcomes of this is really a good one. And of course all this comes with the advice that I should "avoid stress," which can induce contractions and labor. There's almost something darkly comical about the fact that I'm supposed to avoid stress...as there was about being hooked up to a blood pressure monitor while a doctor told us that our baby is probably going to die (I achieved an impressive high of 160/100!).

As bleak as things seem right now, for my own psychological well-being, I find it essential to focus on something positive, and in this case it is looking forward to the future. Pretty soon, this will all be over, for better or for worse, and I look forward to Iggy and I spending some time healing, and then eventually having another baby. We'll shoot for a healthy one next time.

More bad news

Iggy and I spent pretty much the whole day, from 11 a.m. until 7 p.m. at the hospital. As is usually the case, this was not a good thing. To summarize, here is the update e-mail I just sent out to a few people:

Hi everyone-

Iggy and I spent all day at the hospital today and unfortunately received further bad news. The doctors discovered that my cervix is effaced to 1 cm, which is usually indicative of imminent labor. Although I am not having any contractions or anything, basically, this means that I could go into labor at any time between right now and December, although the doctors say that it is "very unlikely" that this baby will make it to full term.

Since I am just shy of 26 weeks gestation, this would be very bad news under any circumstances, but since our baby will require major surgery in his first days of life, things look very dire. We met with a neonatologist who told us that the chances of survival for this baby are essentially nil prior to 34 weeks. The baby would not be large enough to survive the first surgery and would not survive to grow big enough to have it. Even at 34 weeks, his chances of surviving the first surgery would be low, approximately 20%. At 37 weeks, he would be considered "full-term," but again, doctors tell us that the chances of this happening are "low." Unfortunately, nobody can tell us exactly what "low" means in terms of numbers.

The doctors gave us a few options as to how to proceed from here. One option was bedrest, either as an inpatient in the hospital or at home, however, they told us that there is no evidence that bedrest actually does anything to prevent labor. Another option they gave us was to effectively terminate the pregnancy by inducing labor now and then providing only comfort care to the baby for the short duration of his life. We have chosen to follow the third option which is to try to take it easy, but basically continue with normal activities, and to continue to monitor the situation and hope for the best, although it does not
look good at this point. We will schedule a follow-up ultrasound in the morning, hopefully for Friday.

Obviously, this is a huge blow to Iggy and myself, just when we felt that we were starting to deal with the previous round of bad news. The funny thing is that we had an ultrasound and a fetal echocardiogram today, and other than this, got pretty good news. The baby is actually large for his gestational age (2 lbs., 6 oz. or 70th percentile), with no current evidence of the mysterious "bowel spots" seen on the last ultrasound, and his head growth is proceeding normally (children with HLHS often have restricted blood flow to the brain, which causes impaired head growth and neurological abnormalities). The small ascending aorta the surgeon had expressed concern about is now apparently growing normally, but of course, his underlying HLHS is still there. So that's the "other than that, Mrs. Lincoln, how did you like the play?" part of the story.

So, while a good outcome from all this is still not impossible, it is looking significantly less likely. Thankfully, Iggy and I are in agreement that while we want to do everything reasonably possible to give this baby a chance to survive, we realize that even under the best of circumstances, our son will face immense challenges, so if this doesn't work out in our favor, it may be for the best, although it certainly doesn't feel that way right now.

Anyway, I will continue to keep you posted, but wanted to get the news out about this tonight.

Love,

Jen

Well, it's been an intensely busy couple of days, and a lot of that has been HLHS-related. I do realize that I have a tendency to go on in excessive detail about things here, so I will try to sum everything up as concisely as possible!

First of all, I finally did get to talk to Surgeon #1 yesterday, and he spoke to me for a long time. It turns out that he actually developed the Hybrid procedure, which I didn't know, and while he couldn't really give me a lot of data on outcomes of the procedure, because it doesn't really exist yet, he made some pretty strong points about why the Hybrid might be better than the Norwood.

I don't want to get bogged down in discussing all the details, but will just say that at this point, the biggest question mark in my mind about the Hybrid vs. Norwood issue is the stage 2 surgery. With a Hybrid, you have a much less invasive and less dangerous first surgery, and a more invasive and more dangerous second surgery. The idea is that by the time of the second surgery, the baby is stronger and more resilient, but it is a challenging procedure for the surgeon, so I think I want to try to meet with Dr. Azakie again and talk to him some more about it.

To be honest, one of the scary things about going the Hybrid route is that if the baby does die, I think it would be easier on us for him to die around the time of the first surgery rather than around the time of the second surgery. Obviously, either scenario would be devastating for us, but I think it would be a lot harder to lose him after we've already integrated him into our lives. So, I have to say, that is a consideration for me. But only one of many.

This morning we had an appointment with the head of Pediatric Cardiac Catheterization, who would be intimately involved in the Hybrid procedure if we were to go that route. One of the things that's kind of funny about our situation right now is that at the moment, technically I am the cardiac patient. So I had to fill out a form about the medications I take, and they had to measure my height and weight before we met with the doctor, even though we were just meeting with him to talk! The apppointment was not that eventful...basically I asked him a bunch of questions about the Hybrid, but nothing he said really made the decision any more clear, which I suppose is only appropriate since a clear answer doesn't really exist at this point.

After the doctor's appointment, we met up with Jeni, who at 24 is one of the oldest HLHS survivors and one of the first babies to undergo the Norwood surgery, and her husband Nick. They live down in Southern California, but were up visiting relatives in the Bay Area and generously took time to come and meet up with us. Jeni seems to be doing very well, although she told us that she has some limitations in her life stemming from lower-than-average energy levels which make it tough for her to find a job. And of course, like anyone in her situation would, she said that she worries about what her future holds health-wise. Oh, and perhaps most frightening of all, she told us that she doesn't have health insurance. I haven't written anything here about the current health care debate because I don't think this is really the place for that, but needless to say, I am watching events very closely, having both a husband and a son who are "uninsurable" under the current system. Anyway, Iggy and I had a good time meeting them, and really appreciate the fact that they took the time to come hang out with us!

You might have noticed that I didn't mention much about work today...that's because I pretty much got none done. But never fear, I'm going to be in the lab all day tomorrow. Someday I'll be all caught up on everything! Or so I tell myself.

Other opinions

I know I haven't posted to the blog in nearly a week, but I've been very busy researching stage I surgical options and trying to get as many opinions as possible.

After our meeting with Dr. Azakie last week, when he suggested that we consider doing a Hybrid procedure for the stage I surgery, my first response was to try to read everything in the medical literature about Hybrid. vs. Norwood surgery. That didn't take me too long because there's not too much out there that's been published, and a lot of what has been published isn't really relevant to our case for a couple of reasons. One, the Hybrid procedure itself has been around for a while, but has only really been refined to what it is now in the last 6 years or so. And two, because a reasonably effective alternative to the Hybrid was already in place (the Norwood), most places were initially only willing to try this newer, experimental surgery on babies who had other risk factors that made them unlikely to do well with the Norwood. It's only in recent years that certain surgical centers have started doing a lot of Hybrids on babies who would also be good candidates for the Norwood.

Anyway, there are a couple of surgeons who have been clear leaders in the Hybrid field, and I was hoping to talk to both of them, but didn't particularly want to go through the insurance hassle of setting up an out-of-network consult. I had their e-mail addresses from their publications, so I asked my M.D. friend Elaine her opinion...would it be kosher to just write these guys and ask their opinion? She said she thought it was worth a shot, and advised me to 1. use flattery and 2. make myself sound important. Good advice for most things in life, I guess! Anyway, I'm not sure if it was the flattery, or if these surgeons are both nice people but they both agreed to talk to me.

Surgeon #1 has probably done more Hybrids than anyone in the world. He is the head of a surgical department that does mostly Hybrid stage I repairs, and people from all over the world fly to that hospital to have Hybrids done. Unfortunately, my attempts to actually talk to him have been marred by a series of mishaps that would be funny if I weren't so desperate to talk to him. First, he was supposed to call me on Monday, so I took off early from work so I'd be at home and able to talk to him in private. And he did call, except my cell phone didn't ring OR tell me I'd had a missed call, even though I was in an area where I got reception. In addition to being frustrating, it was also pretty embarrassing that I'd asked this surgeon to call and do me this favor and then I didn't even answer my phone. Anyway, then he asked if he could try me the next day, but I had a work commitment. And then we rescheduled yet again for this morning, but I never heard from him...apparently he'd gotten stuck on an airplane. A few hours later, he called back, and I actually did talk to him for a minute, and then he told me that he was headed into the mountains and that his reception might cut out, which sure enough it did about 30 seconds later. We're supposed to try AGAIN at around 3. God knows if it will actually happen, though!

And then I just got off the phone with Surgeon #2. My impression from reading his papers was that he was a bit more skeptical about the Hybrid procedure, and he told me that at the hospital where he used to work, he'd gone through a period of doing Hybrids on everyone, but had since determined that these had a fairly high rate of complications (although these were all things that could be fixed) between the first and second surgeries and had gone back to doing more Norwoods than Hybrids. But despite this, I felt like he didn't really push me either way...I don't want to say that he wasn't helpful, because he did answer all my questions to the best of his knowledge, but his answers were all pretty equivocal, just because nobody has really shown yet whether one surgery is clearly superior to the other.

I asked him about the learning curve for the Hybrid surgery because the UCSF team has done relatively fewer of these than Norwoods. He said yes, there is a learning curve...but that Dr. Azakie had a very good reputation as a surgeon and was likely to learn quickly. I asked him if he had any sense of whether the neurological impact of the two procedures was different, and he said he didn't know. I asked him whether he thought that blood flow to the brain was as good after either procedure, and he said he didn't know.

So, anyway, neither option seems like a clear winner at this point, but we still have a lot of people to talk to and a lot of time to decide.

In other "talking to people" news, I finally did meet with the friend-of-a-friend pediatric cardiology fellow at UCSF for a while yesterday. We only got to speak briefly before he got called to an emergency, but he seemed really nice, and it was good to meet someone else in the department. Tomorrow morning we have an appointment with the head of Pediatric Cardiac Catheterization, who would be intimately involved in the Hybrid if we chose to go that route, so I look forward to talking to him, and then we're also meeting up with a 24-year-old HLHS survivor who lives in Southern California but is visiting the area with her husband. Hopefully I'll have time to report back on all that tomorrow!

Quick debriefing

We just got out of our meeting with Dr. Azakie, and while I should be preparing for the presentation I have to give at 9:30, I wanted to jot down a quick meeting synopsis first.

The most notable thing about our meeting is that Dr. Azakie was quite enthusiastic about doing a Hybrid procedure for our stage I surgery instead of a Norwood. From my reading, I knew that many surgical centers were doing this alternative surgery with good results, and the feeling was that it was less traumatic and less damaging than the classic Norwood procedure. This page talks about the differences between the two surgeries. Anyway, less invasive sounds good, but the drawback is that the Hybrid procedure is newer and less established, and when I asked Dr. Azakie how many he had done, he said that he had done 3 or 4 with the current method, and about 10 prior to that using an earlier method. So, not many! As I wrote before, Stanford doesn't do Hybrids because they feel that they have very good success with the Norwood, and are of the "if it ain't broke, don't fix it" school. So, that is a big decision we will have to make, but my bias is that if we can do a less invasive procedure, we probably should, even if it is less tested. But I may change my mind about that.

He said that overall, he'd had very good success with the first-stage surgery (using either method) and estimated mortality from that stage to be 5% or less, and that includes babies with low birth weight and other negative prognostic factors.

Going in to our meeting, one of my biggest worries was making sure he was going to be around to do our surgeries. We are due December 9th, although the baby could come later, and the first stage surgery is usually done about a week after birth, which puts us awfully close to Christmas. He assured me that he is not planning any big holiday vacation, and when I asked him what happened if he got the flu, he said, deadpan, "I don't get sick." "Oh, that's right," I said, "you're a surgeon!" He then mentioned that he had an "assistant"...another surgeon who is new to UCSF. I got the new guy's card but haven't had a chance to check him out yet. I expressed some doubt about being foisted off on another surgeon but Dr. Azakie assured me that HE would be our surgeon.

Some other random tidbits from our conversation:

-He estimated that the baby will be in the hospital for about 3 weeks after his first surgery regardless of whether we did the Norwood or hybrid procedure. He said the main obstacle in going home is feeding issues, so it could potentially be much less time in the hospital if he doesn't have feeding problems.

-He also estimated that about 25% of patients go home on oxygen after stage 1 surgery. This seemed pretty high to me compared to what I've read elsewhere.

-He said that he thought that the hybrid would pretty much eliminate the risk of interstage mortality between the first and second surgeries.

-I asked him his gut feeling about how long these palliated hearts could last, and he gave a rather pessimistic answer of an average of 10 years (in contrast, a more optimistic cardiologist told me she thought 30-40 years, at least). However, he didn't seem to be aware of how many people with HLHS in their 20s are out there. He told me that the oldest patients are now "about 20," and I mentioned to him that next week, I'm supposed to meet up with a 24-year-old woman with HLHS, and that I'd heard from a surgeon who had helped a couple of HLHS patients through successful pregnancies, and he was very surprised. But, since he's a surgeon and not a cardiologist, that's not really his field of expertise.

-He also said that there didn't seem to be anything particularly notable about our baby's case. The one thing that did look risky to him was that his ascending aorta seemed to be particularly small. However, he said that it still might grow more before he's born. Let's hope.

Anyway, overall, he seemed pretty nice and was willing to answer all our questions. He also said I could stop by any time to talk, although I imagine that in practice, his schedule is probably not too amenable to that. But overall, I was satisfied with our meeting.

Big Day Tomorrow

Tomorrow morning at 7:30 a.m. we finally meet the most important person in our lives right now: Dr. Azakie, who is slated to perform our baby's surgeries.

It's pretty strange to be finally meeting him after having spent most of the last few weeks reading so much about his career, asking other doctors about his reputation, and talking to the parents of many of his other patients. It's even more odd considering that we both work at UCSF and that his office is not too far away from my lab. In fact, a couple of weeks ago, one of my co-workers, who also reads this blog, walked into lab and told me "I think I just rode up in the elevator with your surgeon!" She read his name off his ID badge and it sounded familiar, but it took her a couple of minutes to realize where she knew the name from. She said he was tall (a piece of data that was corroborated by Jen Campodonica yesterday), and "seemed nice" (I guess he was chatting with someone in the elevator). So yeah, basically I've been stalking this guy for three weeks, and now we get to meet him! I'll let you know how it goes.

Firsts

This week has been marked by a few notable "firsts":

-First stranger touching my pregnant belly. OK, she wasn't a total stranger, but someone who I interact with for a couple of minutes at a time maybe once a month at work. I don't know her name, so she counts as a stranger. I happened to see her yesterday, and she touched my belly and said "oh, you're pregnant!" She was just trying to be nice, and I didn't really mind, but it was a surprise!

-First Braxton-Hicks contractions. At least I think that's what they were. I was sitting in a meeting, when all of a sudden I started feeling what felt like my abdominal muscles twitching. It only happened the one time, though, so far. According to my pregnancy book, this usually starts happening "around your 22nd week of pregnancy." I am 23 weeks tomorrow, so right on target, I guess!

-First in-person meeting with another CHD family. Today I got to hang out a bit with the Campodonicas: Jennifer, Kevin, and their 4-year-old son Zakery, who has hypoplastic RIGHT heart syndrome, which as you can probably surmise, is similar to what our baby has, but involves the other side of the heart. They had come in to UCSF for a doctor's appointment for Zakery, and it was great to hear about their experiences and to meet Zakery, who certainly doesn't look or act like a kid with a serious heart condition! Hearing about and seeing kids like Zakery is a great reminder of what is possible, and that is of great comfort when I have those pesky fleeting thoughts that I cannot possibly handle this. I can, and the Campodonicas have, and we will, too.