To Sleep . . . .

I woke up this morning at 6:45 to Lively fussing and hungry. This is not unusual. What is unusual is that I don't remember getting up with him last night. So I thought, finally, he's sleeping through again.

Evidently, however, I slept through Lively's 3 am feeding. Usually I hear him cry well before Pete does, partly because Lively sleeps next to my side of the bed, and partly because Pete sleeps like a rock. Last night, though, I didn't budge. He cried long enough to wake up Pete, so Pete got up, changed Lively's diaper, and put him next to me in bed so that I could feed him. Still, no movement from me. Finally Pete got a bottle from the fridge and fed him.

It's amazing to me that I didn't wake up. I always wake up. Except that last night, despite my exhaustion, my free-flowing worry kept me up until after 1 am, so that when I eventually drifted off, I crashed.

I've never been so tired.

Long time, no blog

It has been 9 days since my last confession.

Actually, I've really enjoyed creating this record of Lively's experience. I recently saw that blogger allows you to publish your blog in book form, and I have a vision of an alternative baby book that we'll read with Lively one day, when everything is better and we can look back on this and laugh.

I write that with a bit of sarcasm. There's not much that's funny about this situation. Also, intellectually, I realize that everything might not get "better," but I continue to find myself thinking that it will, that Lively will come out of this with no motor or cognitive deficits, that he will reject his academic scholarship to Harvard for U of M (to be closer to mommy and daddy), that he will be a piano-playing prodigy with hundreds of friends because he will be such a well-adjusted, nice, cool, fun boy.

I've also been thinking of a patient I helped care for when I did my gyecologic oncology rotations as a resident. I met her many times during my 4 years as a resident. This woman had ovarian cancer, and she was cared for by her sister. The patient had been quite sick for years. She was in and out of the hospital multiple times. She lost so much weight that she was quite literally wasting away. She wasn't able to eat solid food; her only caloric intake was from a tube that went directly to her small intestine and fed her mostly-digested formula. She had increasing pain, and ultimately was admitted to the hospital with severe pain and respiratory distress so severe that she was barely conscious. And after half a day like this, she died. Her sister, who experienced her long, slow decline every step of the way, was absolutely shocked when she died. She had convinced herself that this ovarian cancer was a bump in the road, that her sister would get through it and recover, despite failed surgery and multiple failed chemotherapies. Despite the obvious evidence to the contrary, she never believed her sister would die, and so when it happened, she was completely unprepared.

I'm thinking of this because every day, I find myself thinking, "When all this is over . . . ." In my heart, I realize that I don't believe that Lively will have any permanent deficits. Sometimes, I worry that I'm not preparing myself for the possibility that he will. Sometimes, I wonder if I'm still in the denial stage of coping with all of this (although I'm finding myself feeling like I'm in stage two more and more!) I've always felt that it's better to be prepared for not-so-positive things that may happen in the future, but I'm wondering more and more if I'm more like the patient's sister who refuses to believe that her sister is actually sick.

The changes in Lively's appearance and behavior hit home for me this week when I saw this video that Pete took about one week before Lively's infantile spasms began:

Again, it's easy to see the dramatic change in his appearance. What struck me the most about this is that Lively was babbling at this time. He was not just cooing (oohs and aahs) but he was making consonant sounds also (mamamamama). He's not doing that anymore. So seeing this made me really sad. I worry, of course, that his speech won't ever come back. Actually there's a very good chance that it will -- his stroke did not affect the speech centers in his brain -- but I'm his mother, and worrying is what mothers do.

Here's a contrast video that I took about a week ago. The quality isn't as good, because I took it with my iphone, which doesn't have a video camera. Pete recently went to a technology conference and learned about this app that turns the phone's regular camera into a video camera, and, as Pete says, the best video camera is the one you have in your hand.

He still vocalizes, but I feel that he has really regressed in this particular area. This video also shows how Lively is posturing with his left hand now, as I mentioned in my last post. We don't know what this means yet (is it a seizure? is it motor dysfunction?), and there's no way to know right now.

The real reason that I haven't updated recently is that I'm absolutely exhausted. Although we continue to wean the ACTH, Lively's sleep patterns are worsening. He wakes up every 2 to 3 hours at night ravenous and inconsolable. Instead of nursing and going back to sleep right away, he's up for an hour or so each time. He's so hungry that I can't fill him up just by nursing, so I've been thawing the frozen breastmilk from our freezer, and our supply of frozen is rapidly diminishing. The nursing and lack of sleep are taking a huge toll on me. I haven't had a good night's sleep in 2 months, and we have at least 3 more weeks of this, assuming things get better when we're done with the ACTH.

Here are a couple more recent photos. I love this one because of the way his hair is sticking straight up in the back. I'd be happy if it would always do that!

These pajamas inspired his room theme (which is John Lennon/Beatles). Here's a photo of my favorite part of Lively's room (I blocked out an annoying price bubble on the bottom right). I just love these for my little guy's room!

Finally, here's a photo of Froggy Boy after his bath a couple days ago.

Again, Pete and I are so grateful for all of your kind words and thoughtfulness during this difficult time. Despite what we're experiencing, we feel lucky to have so many people who care about us in our lives.

Good news

Finally.

Wednesday Lively had an appointment with his neurologist. First he had an EEG.

Pete and I have been worried because for the last week, Lively has been posturing with his left hand. He might be sitting or laughing or sucking his thumb, or chewing on his Sophie the giraffe toy, and suddenly he will stop, open his left hand in front of his face, and stare at it for a moment. He's doing it in the picture above, and in the one below.

When I first saw him do this, around a week ago, I was excited, because until that time he had been clenching his hand, which made me worry about spasticity and cerebral palsy. So to see his hand open made me happy. But something about the way he repeated this posture, and the fact that we were seeing it more frequently each day made Pete and me think of his seizures. We hadn't seen any obvious seizures in around 5 days, but as Lively underwent his EEG, we realized that he was probably having a new kind of seizure.

However, his EEG looked much better. It was still abnormal, but there were no definite seizures, and no hypsarrythmia. Most of the abnormalities were in the right side of his brain, in the region we know was affected by the stroke. There did not seem to be a correlation between his hand posturing and an EEG abnormality. The line in the assessment on which I'm focusing is, "Compared to the prior EEG, dated 2/24/2010, this study is markedly improved."

Lively's neurologist does think that his hand posturing is likely related to his stroke, and may be some "evolving dystonia." Basically, we still don't know what his motor deficits (or cognitive deficits) will be, and it may be many months before we know what is going on with his hand.

Overall, we finished the day feeling that the news was positive. EEG, better. Development (sitting, cooing), better. If we don't think about the hand thing, or the risk of seizures in the future thing, or the fact that we might have to go back for another 24-hour EEG if he keeps doing the hand thing thing, then the news is pretty good. Really.

Fat Suit

Lively's appearance continues to change dramatically.

My mother just emailed me the first photo, which is Lively and my grandmother. It was taken the last weekend of January, just 6 weeks ago. The second photo was taken last night. You can see why we feel that he is changing before our eyes. I look at him now, and I can barely make out the features of the top guy on the bottom guy. I think he's not recognizable as himself. The photos illustrate his disposition change as well. Six weeks ago, he was such a happy guy, all the time. Now, we work really hard to get him to smile. All of these effects are due to one of his medications -- ACTH. We have at least another month for this drug, and I can't imagine how four more weeks might change him. He is developing stretch marks on his cheeks right now. Will those go away? I'm using every moisturizer I can think of on his face, but I can't tell that it's helping.

Here's Lively after his bath last night, clean and beautiful!

There's one more Lively photo I have to share! Jack, my cat, has always been a bit skittish. He hogs attention from Pete and me, but he has always stayed away from Annie. It seemed like her crying bothered him when she was newborn, and as she grew and became interested in him and wanted to pet him (and pull his ears and tail), he just stayed away. He has never been aggressive, so we don't worry too much about him scratching or biting -- he's a big chicken. But he has always been interested in Lively. When Lively was tiny, we had to be very careful to keep Jack out of our bedroom when Lively was sleeping, because Jack would curl up next to him, and I was afraid he would lay on top of him. Now that Lively is bigger than Jack, I don't worry so much. And Jack clearly loves Lively. If given the chance, he sneaks into our room, and curls up with him. The feeling is mutual -- Lively coos and laughs at Jack, and even reaches out to pet him. Lively grabs handfuls of Jack's fur and pulls hard, and Jack just purrs. It's very sweet. Here's some photo documentation of Jack in Lively's co-sleeper (which is not allowed, but I let him stay long enough to take this picture).

(For my pregnant friends or those of you with infants, the boys are in an Arm's Reach Co-Sleeper, which I cannot praise enough. It attaches to the bed, and keeps the baby next to you, but not actually in your bed. Ours was handed down to us by our wonderful former neighbors after their baby was finished with it.)

I also want to include some recent photos of Annie, who continues to do really well. She loves her brother, and although I'm sure she can sense there's something happening with him, she remains well-adjusted. The first photo is also courtesy of my mother, taken during her recent visit. The second is Annie in her Fancy Nancy Bonjour Butterfly outfit.

Annie is a big fan of the Fancy Nancy books, and despite the pink and gaudy girliness of this outfit, I really like them as well. The books are well-written and funny, and teach new words. For example, Nancy's favorite color is fuchsia -- that's a fancy way of saying purple!

We have another long day of doctor appointments tomorrow. Lively has an EEG and a neurology appointment. Annie, who is hobbling around on a sore foot (no idea how that happened) may get to go to her doctor today. Wish us luck.

Bigger boy

One thing that's particularly bothering me right now is how big Lively is getting. He's gained about 2 pounds in the last 2 weeks, which, considering he's starting at less than 18 pounds, is a considerable percentage gain. It's great that the seizures are better (we haven't seen any in 2 days or so), and despite the fact that he's grumpy and feels terrible, he's still my sweet, precious boy. But he is literally growing before my eyes. When this journey began, it was easy to forget that there was actually something serious going on with him sometimes, because he just looked so good. Now, I look at him sometimes and do a double take. Where did my baby go? His eyes are squinty because his cheeks are huge. His neck is nowhere to be found, but has been replaced by the most enormous chin. His tiny feet balloon into cankles which are immediately outdone by his thighs! There is no way that his feet could ever support his body; even if he had the strength in his legs, it would be like balancing Mr. Potato Head en pointe.

Don't get me wrong. Lively remains the most adorable, beautiful baby boy I've ever seen. It's just that sometimes, things seem to be going well, and we forget how serious things are for him for a few seconds, but then there is an immediate visual reminder of everything that's happening. Sometimes, it would be nice to forget, just for a minute.

Annie is doing great. I don't think she has a sense of how worried I am, and so she continues to be her happy self. Here's a blurry picture of Annie and the play-doh octopus we made tonight.

The great news (I saved the best for last) is that Lively sat by himself yesterday for a couple minutes. He will be 8 months old in 5 days. He actually sat alone 4 days ago for his babysitter, but he demonstrated his new skills for us last night. I can't begin to describe how thrilled we were! This is the first real milestone for him since he started having seizures, so we're very happy to see some progress with his motor skills. Here's the proof!

Big Boy

As I have mentioned, one of the side effects of Lively's ACTH medication is weight gain. In fact, it gives him a condition called Cushing's Syndrome, which causes many undesirable effects. Although I have always thought that a baby can't get too fat, I think I've changed my mind. Lively is puffing up before our eyes. He has fat on his face beginning at his temples and continuing to his very prominent second chin. There is a new cushion on the back of his scalp. His hands have rolls upon rolls, and his joints look like deep dimples. He has developed a fat pad on the back of his neck, also known as a buffalo hump.

Pete says his profile looks like Alfred Hitchcock.

This is a photo I took of him 2 days ago. He's considerably bigger today.

 

Lively is now 7 1/2 months old and wears size 12 month clothes, some of which are a little tight. He's so heavy that I feel my back and shoulders strain when I put him in his co-sleeper or lift him out of it. 

The good news: he held himself in a sitting position for almost a minute yesterday; he cooed at us today; despite the fact that he obviously feels terrible, he still shows his beautiful, toothy smile (he now has 7 teeth and more on the way).

Last night Lively felt very warm to me in the middle of the night. This morning his temp was 100.7, so he visited his pediatrician again. No sign of ear infection or any other infection, so there's nothing more to do right now. It's particularly scary when he gets a fever now because of his immune suppression. Maybe it's just teething. We'll see.

Settling in

I haven’t posted any updates in about a week because we’re kind of settling into our new lives. In many ways, we feel like we have a new baby again, because we’re trying to find the best routine to get Lively fed, medicated, dressed, to doctor appointments, all while being quite sleep-deprived and suffering from cabin fever.

Lively started sleeping through the night when he was around 10 weeks old, right around the time I went back to work. He has been an excellent sleeper until now, but due to the ACTH side-effect of increased appetite, he wakes up needing to eat every 3 hours. And let’s just say, due to the increased intake, the diapers aren’t making it through the night either anymore, even when we put Annie’s size 5 on him! (For those of you who aren’t familiar with diaper sizes, most kids potty train out of size 5, so it’s what most 2 and 3 year olds wear.) I usually give him bottles mixed with rice cereal to try to fill up his tummy before bed, and he usually falls right asleep (as below), but wakes up 2 or 3 times a night. Both Pete and I are back to work, so we don’t have the luxury of maternity/paternity leave naps during the day.

We wake up extra early now to administer the many drugs Lively has to take: 

1. Topamax, the new anti-seizure medication
2. Bactrim, to prevent him from getting a special pneumonia that’s usually only seen in people with very suppressed immune systems (for example, AIDS patients or people on certain chemotherapy)
3. Zantac, to prevent bleeding in his stomach which is a side effect of
4. ACTH (an injection), the initial anti-seizure medication which has decreased but not stopped his seizures.


Those are the morning meds, and he hates them. He hates them so much he’s been resisting eating new foods, because (I think) each time I offer him a spoon, he thinks it’s a yucky medicine. I’ve been concerned about this because evidently, there’s a developmental window in which you should start offering food to an infant instead of just breast milk (or formula) and if you miss the window, it’s a huge struggle to get the kid to eat later. We’re in that window. Lively’s pediatrician suggests we start vegetables first to get him used to eating non-sweet foods, and when he gets the hang of it, offer fruits, which most kids like. I tried squash first, around 2 weeks ago, and it was a dismal failure. So I thought, screw it, have a banana. Nope. He hated it. Then I tried steamed, crushed apples. No dice. Today, smashed peas. Bingo! He opened his mouth for the spoon multiple times, laughed, and swallowed! What kids prefers peas to bananas? Here’s some evidence:

Then there are more meds mid-day, and more again at night. Have I mentioned how much these cost? At some point I plan to go into a tirade about ACTH, but I don’t have the energy right now. Let’s just say, if we didn’t have health insurance, we would likely lose our house to try to pay for this one medication that Lively will probably take for about 3 months. One time, the needle popped off the syringe as Pete was injecting Lively with his medication, and we guessed that he had spilled about $3000 worth on Lively’s leg. (Yes, that is the correct number of zeros.)

Today Lively felt a little warm to me, and I took his temperature and it was 100.5. A few hours later, and after some Tylenol, it was 100.4. His pediatrician is fine with us watching him closely at home right now, but if it gets much higher or persists, we get to go back to the doctor. What worries me is that a small cold can get very out-of-hand in a baby with no immune system, and the last thing we need is another hospitalization.

Thanks again to all of you who are following along with us. We sincerely appreciate your letters, emails, calls, and visits (see cabin fever, above!)