Monday, November 30, 2009

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!

Sunday, November 29, 2009

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.

Saturday, November 28, 2009

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.

Friday, November 27, 2009

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!


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!

Thursday, November 26, 2009

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.

Wednesday, November 25, 2009

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!

Tuesday, November 24, 2009

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.

Monday, November 23, 2009

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 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.

Sunday, November 22, 2009

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.

Saturday, November 21, 2009

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.

Friday, November 20, 2009


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 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.

Thursday, November 19, 2009

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!

Wednesday, November 18, 2009

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!

Tuesday, November 17, 2009

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!

Monday, November 16, 2009

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.

Wednesday, November 11, 2009

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.

Monday, November 2, 2009

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.