Lively's Fall Developments, Part 1: Gross Motor

I have so many updates for the last few months that I've decided to try to simplify by dividing them into categories. Gross motor refers to skills involving large muscle groups. This means development of head control, balance and strength. These are the things we work on in physical therapy, so that Lively can sit, shift his weight, crawl, walk.

In August when Lively was 13 months old, I stupidly read the one year expected motor milestones, and he had not met any of them. I'm happy to say, now, at 17 months, he meets most of them (I highlighted the ones he has accomplished):

• Reaches sitting position without assistance
• Crawls forward on belly
• Assumes hands-and-knees position
• Creeps on hands and knees
• Gets from sitting to crawling or prone position
• Pulls self up to stand
• Walks holding on to furniture
• Stands momentarily without support
• May walk two or three steps without support

It's actually nice to be able to look back at the old list (here) and compare it to what he can do now. Four months ago, Lively couldn't do any of these things. Now he can do almost all of them. He started crawling about a month ago (!) and within a week, he pulled up to standing, and within 2 weeks he started cruising. This morning Pete and I took our eyes off him for about 5 seconds and he crawled halfway up the basement stairs! I didn't even know he could go up one stair.

So this is great news, and we're thrilled about his progress. When Lively started trying to get on hands and feet, it was obvious that his left arm was weaker than his right. His arm would collapse after holding himself up for a few seconds. But he has been able to strengthen so that now he can crawl all over the place. When he gets really tired (after chasing Annie for an hour or so), his left arm is noticeably weaker than his right, but clearly he is much stronger than when he started trying to crawl.

About 2 weeks ago Lively was able to start walking while holding our hands. He looks so proud when he does it, and after a few steps he's so pleased with himself, he tries to run! Today he pulled up on the back of my pants, and I started to walk slowly, and he walked right along behind me, holding onto my legs. Now that he's really using his legs, we also see a significant weakness in his left leg when compared to his right. We feel hopeful though that he will be able to strengthen his legs also so that this doesn't cause him a problem.

So, for my readers that may not have absorbed all of my 47 earlier posts, Lively had a right-sided stroke, probably around the time that he was born (although we'll never know for sure), and this is causing left-sided weakness. When Lively's stroke was diagnosed at age 6 months, no one knew what this would mean for him from a gross motor standpoint. We were told he may have cerebral palsy. Actually, he probably does have a mild form of CP, but the fact that he is able to move and strengthen his arms and legs and is progressing so well is a great sign.

I understand now that his neurologist really didn't think he would ever be able to do what he can do now. I didn't realize that at first, but she is so surprised and pleased every time she sees him, I know he's doing better than expected.

The rest of Lively's milestones aren't progressing as quickly as his gross motor development. No one knows what this means. Perhaps these areas (fine motor, speech, cognitive development, social skills) will come along too. We don't know.

I've mentioned this before, but it's something I think about every day: when Lively's stroke was diagnosed, the neurologist told us that we will celebrate each milestone he achieves whole-heartedly, and then we will instantly start to worry about the next one. He was right.

Here's a picture of all the kids on Pete's side of our family that he took on Thanksgiving. The 2 older girls are Pete's sisters, Cassie (holding Lively) and Maggie (holding Pete's sister Patsy's baby, Natalie). Brooke and Leo (also Patsy's) are my kids' older cousins. Annie and Leo look like they could be twins!

I'm back

Hello blog. I've missed you.

I've been suffering from writer's block. I guess. I think about my blog every day, and think of things I'd love to write, but then I don't. There are a couple of reasons for this.

A lot has been happening. I have about a million Lively updates, and the longer I wait, the more I have to write. So the task feels daunting, and I put it off.

The big reason I haven't written lately is that I am struggling. Some days are good, even great, and others overwhelm me. And that feels so personal, that I'm not always sure that I want to share it. But I'm not sure how to tell Lively's story without getting personal.

I've never been someone who keeps things extremely private, but certainly to a degree there are events, thoughts, feelings that I don't share with people I don't know well. A lot of people read my blog (maybe not anymore, because I've been away for awhile), and I don't want to censor myself for a particular friend or family member or coworker. There's no point in doing this if it's not authentic, I suppose. But I'm becoming more aware that what I want to write isn't really about Lively, but about my experience with Lively and Annie and Pete. And my experience, lately, feels almost too ugly to record. But I suppose I will.

So continue to follow at your own risk. It's about to get personal.

(Well, not right now. I hope to post some Lively updates in the next few days.)

What not to say

I have a friend whose infant son is currently very sick, hospitalized, and no one knows when he might get to go home. Their situation is terrible. We're kind of new friends -- we knew each other before her son was born, but since then, I have been visiting her and her baby whenever I'm in the hospital, and I think we've bonded a bit over what it's like to be a mother of a really sick child. Recently, we had a conversation about the dumb things people have said to us.

The "stupid things to say to a mom" theme started when I was pregnant. You're so small, are you eating enough? Is your baby OK? My patients tell me all the time that strangers feel free to comment on their bodies, saying things like, Are you sure there's only one baby in there? One of my patients, obviously pregnant, told me recently that she was cornered at the grocery store by a complete stranger who, in giving her unsolicited advice, told her stories of several people she knew who had stillborn babies. This is NOT HELPFUL.

People are dumb. They say all kinds of dumb things, even to mothers of sick kids. Most comments, like the ones below, are well-meaning, but just thoughtless.

And so, inspired by a recent conversation with the friend I mentioned above, I have decided to compile a list of what not to say. Feel free to add to it. I plan to.

1. It's going to be OK.

Actually, it might not. Thank you for wanting things to be OK for me, but they aren't right now, and terrible things happen to people. Saying it's going to be OK invalidates my fears that things may not get better. Instead, say, this really sucks. Because it does.

2. Let me know if you need anything.

There are about 4 people in this world that I will actually call and tell that I need something. I'm not going to ask most people I know for anything. If you really want to help, don't ask, just bring over dinner! Watch my kids for a couple hours! Come visit us! (We're not staying in all the time because we want to.)

3. Once I knew this kid who had seizures when he was a baby, and he's fine now.

This is not comforting information. I hope every day that my son will continue to grow stronger, and that he will be fine too. But that might not happen. We don't even really know everything that's going on with him medically and developmentally, so there's no way to predict what he'll be like in 6 months, a year, 10 years. (However, My friend's kid has a great speech therapist. Would you like me to find out the name for you? is helpful.)

This will be a running list, so please share your stories if you'd like.

Coasting

My post for the Hopeful Parents blog follows. You can read more about parents and kids with special needs by clicking here.

How is Lively doing?

Lively is stronger. He is able to shift his weight so that he can move around with a combination of rolling and pivoting while sitting. He can get onto hands and knees and back into sitting. He's acting like he's ready to go somewhere. He even tries (and almost succeeds) in pulling up to standing. Needless to say, we are thrilled with this progress.

A few weeks ago, Lively also figured out how to swallow again. He still does not take much food by mouth, but some days he is able to swallow up to an ounce of pureed food per sitting. Again, we are overjoyed by these steps in the right direction.

Last week, Lively had another swallow study. His first was in May, over 5 months ago, and at that time, he aspirated thin liquids. We were told that we had to thicken his milk so that he could manage to get it into his esophagus instead of his trachea. However, Lively completely stopped taking anything by mouth around this time, so for months, despite offering food 3 to 5 times a day, he got all of his nutrition through a tube. Because he started wanting to eat again, Lively's surgeon and his OTs ordered a new swallow study. I hoped for good news.

Lively aspirated applesauce. Previously he only aspirated thin liquids. Now he's aspirating purees too.

So why is this happening? We don't know. Lively was able to breastfeed, drink from a bottle, and eat stage 3 foods with no problem 6 months ago. A lot has happened between then and now, but we still don't know why he can't swallow properly. Everyone is baffled.

I have hope, on so many levels, that Lively's brain and body will continue to heal. I hope that he will crawl and walk and run. I hope that he will write and type and play the piano. I hope that he will eat pizza and cupcakes and drink milk from a sippy cup. I hope that he will go to a "regular" school and take AP courses, that he will have lots of friends, that he will be athletic and artistic and scholarly. I hope that he will turn down his scholarship to Harvard to attend U of M, that he will live in a dorm and come home to do laundry on the weekends.

On another level, I try not to hope these things, so that if he doesn't get there, I won't be disappointed. Or devastated. We're coasting right now. We've been out of the hospital for over 2 months. Lively has graduated to a G-button. He is interested in eating. He is stronger. These things give me hope. Also, he sucks applesauce into his lungs. Did he have another stroke? Was some swallowing mechanism damaged during one of his multiple intubations? Don't know.

I wish I could have faith or hope or the kind of certainty that some people have that everything is going to be alright. I do hope. But I don't count on everything working out. The world doesn't seem to be working that way right now. So we coast, and I try to relax as much as I can, and help Lively make as much headway as possible before we hit another bump.

Things That Have Happened

Lively got a g-tube. It looks like this:



The tube goes through his abdominal wall and the balloon inflates in his stomach to hold it in place. On the outside, there's a "button" that, at times, doesn't have anything attached to it, so he can wear normal shirts or even overalls again! Because he's being fed into his stomach and not his intestine, we can give him bolus feeds, which means we can run a full bottle pretty quickly straight into his stomach, and he digests it normally from there. When we fed directly into his intestine, we had to do a slow drip, because we were bypassing all the digestion that normally happens in the stomach, and the intestine can't handle a huge amount of food all at once. There's nothing like having a big ol' nasty GJ tube for a few months to make having a g-tube seem like a gift.

Coinciding with the g-tube placement, Lively started to make some developmental strides motor-wise. He sits more steadily. When he starts to fall, he puts his hand down and catches himself. He can almost push himself into a sitting position when he's on his side. He tries to pull up to standing, and takes some weight on his feet.

This, by the way, was taken just after his first haircut. Here's the before picture:

I do love a fat little guy with long hair, and I had been resisting the haircut for weeks, OK, months, but he had wings coming off the sides of his neck, and it was shorter in the back than on the sides. It had to be done.

In perhaps even more exciting news -- Lively is eating a little bit. A part of me doesn't want to talk about it, or write about it, or acknowledge it at all. I don't want to jinx it. And he doesn't eat everyday. But one day, maybe a week ago, I brought him home from occupational therapy and sat him in a chair, and fed him some Happy Baby Grrreat Greens, and he opened up, took a bite, and swallowed. Just like that. And then he did it about 5 more times. The next day, he chose not to repeat the performance. But a few days later, he did it again.

All-in-all, he's probably still taking in no more than a tablespoon of food by mouth each day. But that's a heck-of-a-lot better than nothing. Pete and I started mixing pureed foods with breastmilk and putting it through the g-tube a few weeks before, and I wonder if maybe that helped. Maybe his body remembered what to do with food. I don't know. But no one is really guiding us with this. So I turn to google. Thanks google. He ate a few bites!

Next month Lively will have another swallow study to evaluate what is happening when he tries to swallow (he still chokes and gags fairly frequently) and to see if he still aspirates thin liquids. I think he does. One of his occupational therapists suspects that one main issue for Lively is muscle weakness, and so he's having difficulty coordinating all the muscles that allow him to swallow. I believe she's correct.

And speaking of muscle weakness, the more Lively progresses, the more I see differences in his strength when comparing his right and left. His left arm and hand are quite a lot weaker than his right. I think he doesn't crawl because he can't support his weight on his left arm. But all of the PT we have been doing really seems to make a difference -- he's much stronger today than he was 10 days ago. Much! So maybe soon that left arm will be able to do its job.

Annie? Big sister has been such a sweetie-pie lately. (I'm gonna jinx this for sure. We obstetricians are very superstitious, you know.) My parents and grandmother came to visit a couple weeks ago, and my grandmother brought her a chef's hat and apron for her birthday, because Annie loves to cook with my mom when she visits.

My mom and Annie put her new duds to good use and made cupcakes.

Pete and I are pretty sure she's smarter than we are. I'm just thankful that she's doing OK now. She seems happy, and much more relaxed now that we've been out of the hospital for awhile. And she loves her brother!







On Food

My Hopeful Parents blog of the month follows. Check out the rest of the site here!

I've never had such a complicated relationship with food. For the last 8 months, I've thought about food more than any other subject. Lively was 6 months old when he started ACTH to treat his infantile spasms, which was just around the time we introduced solid foods. The medication made him ravenous, so within a few weeks, he went from exclusively breastfeeding to eating large bowls of mashed sweet potatoes mixed with broccoli and peas. He continued to breastfeed, but I mixed the milk I pumped at work with as much cereal as I could to try to fill his belly.

Then one day, when he was 9 months old, Lively stopped eating and drinking. He would not breastfeed, take a bottle, or eat his favorite pear sauce. I think this may have started due to a combination of medication side effects, and perhaps continued due to multiple intubations, NJ tube placements, and other nasty tubes in his mouth. Lively basically has not eaten since. It has been over 5 months, and he's not showing any sign of eating today.

Meanwhile, I have become FOOD OBSESSED.

A word of background -- due to my struggles to breastfeed my daughter when she was born 3 years ago, I became very interested in learning as much as I could about how to help women breastfeed. I am an obstetrician, but as a new mother, I realized I was not equipped to help myself, much less my patients, work through their breastfeeding struggles. I committed to learning as much as I could about breastfeeding, through my own reading, working with lactation consultants personally and professionally, attending breastfeeding conferences, and by researching specific issues to help my patients. The more I learned, the more I became convinced of the amazing health benefits to mother and baby of breastfeeding. I just started a breastfeeding clinic with 2 pediatricians and a lactation consultant, and plan to continue to make this a priority in my career.

With Lively's many health struggles, I felt at times that breastfeeding was the only thing that I could do to help him. It defined me as his mother. In general, I feel there is something very basic about being a mother and feeding your child. I take pleasure in seeing my 3 year old finish a big dinner. I smile quietly with new understanding when my mother-in-law heaps second servings of food on my husband's plate.

So when Lively stopped eating, I felt like some part of being his mother was stolen from me. The breastfeeding was obviously a big deal to me, but not being able to feed my baby at all (other than through a tube, with a pump) has been especially hard for me. I think about food and feeding him all the time. Maybe in a different chair he'll be more comfortable and want to eat. Maybe now that he gets bolus feeds four times a day he'll get hungry between feedings and want to eat. Maybe if he sees his sister eat he'll try. Maybe something sweeter. Maybe saltier. Blander. Spicier. Cheesier. Chocolate? Ice cream? From a spoon? A fork? A bottle? Sippy cup?

No. Nope. No way. Uh uh.

Feeding Lively involves offering pureed foods that he is reluctant to touch and usually resistant to putting in his mouth. If he happens to tolerate the smell, or (rarely) the taste, he isn't able to coordinate moving food to the back of his tongue so he can swallow it. Every teeny tiny spoonful (or the small amount smeared on my finger) comes right back out. So a 30 or 40 minute feeding session results in minuscule amounts being swallowed. We do this 3 or 4 times a day.

I've given a lot of thought to taking Lively to an intensive feeding program. I'm still considering it, in fact. He sees two occupational therapists a week, and we may add speech therapy soon. I look online for information, both from reputable and not-so reputable sources (and then I go to work and tell my patients to be careful googling medical conditions), and I am currently considering incorporating a method invented by a mom who successfully transitioned her son from g-tube to oral feeds whose blog I found.

Food is stressing me out.

Not only do I have to pump nutrition into Lively, but there are 3 additional people in my house who need to eat dinner every once in awhile. We tend to do pretty well, thanks to the kindness of friends, co-workers, family members, and even some very, very generous strangers. (For those of you not famliar with mealbaby.com, check it out. A friend of Pete's registered us both for his church and for Pete's work, which resulted in home-cooked meals delivered to us almost every night for 6 weeks when Lively first became sick. My friends, family, and co-workers came through in a big way as well.) Seriously, if not for the food support from people who wanted to help, there would have been many, many nights that Annie would have eaten PB&J while Pete and I went hungry. One big lesson for me: if someone is having a rough time, don't ask, Is there anything I can do? Instead, bring over groceries, sandwiches, anything. Bring food.

Can't sleep, so here are some updates!

Mainly I want to post some photos, so here they are:

There are a few things I need to point out in this photo.

1. Lively is getting huge! He's heavy as can be, and is in size 18-24 month clothes.
2. He's still smiling. In case you can't read his expression, he's cracking up in this picture.
3. He has red hair!
4. He's wearing a very special handmade sweater that our friend Aimee Fink made for him. Yes, he's wearing his special sweater over his pajamas, but isn't it beautiful? Aimee and her family live in Denver, which sadly means we don't see them often, but since I'm on the subject, whenever Pete or I break a dish, piece of pottery, etc, we send it to Aimee and she smashes it up a little more and makes it into a gorgeous mosaic. You can see lots of examples of what she can do here.

Prior to modeling his sweater, Lively was wearing a complementary Detroit hoodie, so that he and Annie looked like the cutest little match-y brother and sister ever. Sadly, I missed that photo-op. However, due to g-tube leakage, Lively got to model other wardrobe items. Annie, however, kept hers on, as evidenced here:

She looked at her crooked pigtails in the mirror about 10 times. I finally asked her, what do you think you look like with your hair up like that? Her answer: a moose.

Tonight when she was taking a bath we were painting with bath paints (basically liquid soap that comes in red, yellow, and blue), and she commanded me to paint a picture on her hand. What should I paint? I asked. A whale. A whale? Yes, but a small one, because a big one wouldn't fit on my hand.

OK, so Lively's tube is leaking. He's doing very well with tolerating all his feeds into the stomach part of his tube -- we haven't used the intestinal part in weeks. But several times a day he leaks large amounts of fluid around the tube, soaking himself, his clothes, and usually me. Of course, it's stomach contents coming out, so it's very irritating to his skin. We've been really careful to keep the area as dry as we can, and I've been using vaseline as a barrier so that when stuff leaks out, it doesn't burn him as much, but it's still obviously very uncomfortable. I'm hoping to be able to get his tube changed this week (hopefully just in the office, and maybe even exchanged for a button which wouldn't stick out so obviously) but his surgeon has been gone for the last week and doesn't see any patients in the office for 2 more weeks, so we'll see.

Dumb me

I did something really dumb the other day. Dumb, dumb, dumb. Are you ready for it? I looked up the "normal" milestones that a child should have met by the end of one year. Here's Lively's checklist, with the criteria he meets highlighted:

Social and Emotional:

• Shy or anxious with strangers(just starting to be, although maybe only with doctors)
• Cries when mother or father leaves
• Enjoys imitating people in his play
• Shows specific preferences for certain people and toys
• Tests parental responses to his actions during feedings (feedings? what feedings?)
• Tests parental responses to his behavior
• May be fearful in some situations (see above re: shyness)
• Prefers mother and/or regular caregiver over all others
• Repeats sounds or gestures for attention
• Finger-feeds himself (see above re: feedings)
• Extends arm or leg to help when being dressed (nope, dressing him is like dressing a wiggly newborn, only bigger)

Movement:

• Reaches sitting position without assistance (still needs lots of assistance)
• Crawls forward on belly (doesn't like his belly, nowhere near crawling)
• Assumes hands-and-knees position (hates it)
• Creeps on hands and knees (see above)
• Gets from sitting to crawling or prone (lying on stomach) position (he can do supine to prone, but I guess that doesn't count)
• Pulls self up to stand
• Walks holding on to furniture
• Stands momentarily without support (OK, he did this once for a millisecond, and I took a photo. I don't think it counts though.)
• May walk two or three steps without support

Hand and Finger Skills:

• Uses pincer grasp
• Bangs two objects together
• Puts objects into container
• Takes objects out of container
• Lets objects go voluntarily
• Pokes with index finger

Language

• Pays increasing attention to speech (I'm not sure what this means, but I'll give him credit.)
• Responds to simple verbal requests
• Responds to "no" (reserved for Annie right now)
• Uses simple gestures, such as shaking head for “no”
• Babbles with inflection (changes in tone) (I guess)
• Says "dada" and "mama"
• Uses exclamations, such as "Oh-oh!"
• Tries to imitate words(not really sure, but sometimes I think that's what he's doing, so I'll count it)

Cognitive

• Explores objects in many different ways (shaking, banging, throwing, dropping)
• Finds hidden objects easily
• Looks at correct picture when the image is named
• Imitates gestures
• Begins to use objects correctly (drinking from cup, brushing hair, dialing phone, listening to receiver)

So why, you may ask, would I do something like this?

I have, in fact, very specifically avoided looking at these milestones since Lively was diagnosed with infantile spasms almost 7 months ago. I have been warned against comparing him to his sister, the kid down the street, other family members.

But I guess sometimes, I look at Lively and I think, he's fine. He's normal, right? Everything is OK. We don't really need all these doctor appointments, therapy sessions, Early On. He's a normal one-year-old. How could this baby be anything but perfect?

So I thought, I'll just go look around the internet, and surely I'll discover that he's meeting his milestones.

And then I found the list above, and it brought me back to reality. Sucky, sucky reality.

Some days, I feel pretty down. Or furious. Or defeated. And some days I wallow. This is one of those days. OK, to tell the truth, I've been struggling a bit coping-wise for awhile now.

But then tonight was a good night. Lively composed and performed a little tune for me:

And then I felt a little better.

Happy Birthday Annie!

Annie is 3 today! And what a year it has been for my girl.

When I look back at photos of Annie from a year ago, I feel like she has changed more in the last year than Lively has. Here's a video of Annie around her second birthday:

Here's a photo of her just after she turned 2:

She looks like a tiny baby! She's chubby, her hair is still that fine baby hair, her cheeks are chipmunkish. And today, she looks like this:

OK, one more picture. Here she is yesterday with Pete and Lively (we made a big deal about it being the last day she was 2):

She is just so big!

Annie, like the rest of us, has had a rough year, but I think (oh, I hope) that she has weathered it a bit better. She doesn't seem to experience too many lasting effects of our frequent and long-term abandonment of her while Pete and I had to be in the hospital with Lively. Millions of thanks to Grandma and Grandpa for that. But Annie is flexible. She rolls with the punches. She has always adjusted well to changes (moving out of our room into her own, upgrading to the toddler bed from the crib, sharing her parents with a new baby, starting preschool), much better than I have, in fact. I hope she stays that way. I do not do well with change, but hopefully she has inherited her father's flexibility trait.

Annie has been excited about turning 3 for months. She frequently asks when going to bed, "Will I be 3 after this nap?" or "Is my birthday tomorrow?" And so I wanted to plan something special for her. We had a little family party for Annie and Lively about a month ago, and I intended to have a party with her friends this weekend, but it's not going to happen. Unfortunately Pete and I both had to work today, but I decided that this afternoon, I would take her to her first movie in the theater -- Toy Story 3. It was a hit. She was pretty scared walking in the theater at first (loud pre-movie commercials, darkly lit, and empty), but I lured her in with popcorn and pink lemonade, and she loved it. When it was over, she asked if she could stay and watch another one. That's my girl!

We had saved a few presents for Annie to open tonight. It's great, she gets really excited about all of them. Christmas is going to be really fun this year. At one point, she looked in a gift bag that I had quickly stuffed with school outfits I bought for her at Target today, and a huge smile came over her face. "Clothes!" What 3 year old likes clothes for her birthday? My 3 year old. She comes by it naturally. Again, that's my girl!

My real gift to Annie, as she starts her fourth year of life, is a resolution or two, or five I guess. I resolve to be more patient. I resolve not to raise my voice. I resolve to keep my cool. I resolve to sit down and play with her every day, even when everything else seems so overwhelming. I resolve to give her big fat smooches whenever I manage to hold her still long enough to plant them on her. (When Annie was Lively's age, I could never have imagined that I would lose my cool with her. And then she turned 2, and honed her advanced button-pushing abilities. She could teach classes.)

I am so far from the perfect mom, but somehow, I have 2 perfect kids. I'm the luckiest person in the world.

G is for Guilty

Beginning today, I will post on hopefulparents.org on the 16th of the month. You can read this post again by clicking here.

When Annie was born 3 years ago, I was still an OBGYN resident in the last year of my training. After 10 short weeks of maternity leave, I had to return to work for 80 hours a week, every week, for 8 months. I was overcome with guilt. There was the I-work-too-much-and-I'm-missing-my-daughter's-infancy guilt. There was my-husband-is-basically-a-single-parent guilt. There was I'm-so-tired-that-even-when-I'm-home-I-can't-spend-quality-time-with-her guilt. I second-guessed my parenting at every step, and I worried that I was doing things that would negatively impact her development, our relationship, you name it. And one day, my best friend said to me, um, welcome to the club. There are never enough hours in the day, or days in the week; even if you spend your every waking minute with your daughter, you will always be able to find a reason to feel guilty. And slowly, as I talked to other moms who had similar experiences, and my daughter grew from a happy, well-adjusted infant to a rambunctious and brilliant toddler, I realized that Annie was doing just fine in spite of my worries. So fine, in fact, that I thought it would be just great to have another baby.

A little over a year ago, my son Lively was born; I was delivered two weeks early because my amniotic fluid volume was low. (I should have been more careful to stay hydrated.) He weighed 5 pounds 15 ounces. (I should have eaten more, and not taken any medications while I was pregnant.) When he was one week old my grandfather died, and we traveled to Kentucky for the funeral. While we were there, Lively got an eye infection and a fever, and he was hospitalized twice, requiring multiple needle pokes, IV antibiotics, and 2 lumbar punctures. (I shouldn't have let so many people handle him and expose him to their germs.)

When Lively was 3 months old, he was diagnosed with torticollis, which is a contraction of one of his neck muscles that limits his movement. His pediatrician sent him for physical therapy. (I should have done tummy time more.) When he was 6 months old, he started having seizures. (I should have noticed something sooner.) He was diagnosed with infantile spasms, and an MRI showed that he had had a stroke, probably around the time of his birth. (What the . . . ?) A blood test showed that he has a genetic mutation that slightly increases his risk for developing blood clots. It doesn't explain why he had the stroke, but is perhaps an underlying risk factor. (Have I passed some horrible genetic condition to him?) He was treated with ACTH, a drug that decreased Lively's seizures dramatically, but that basically caused him to feel absolutely terrible for months and that brought his development to a screeching halt.

For some reason I still don't understand, Lively stopped eating and drinking when he was 9 months old. He was hospitalized for dehydration. After a few days, he aspirated after vomiting, went into respiratory distress, and required urgent intubation and a ventilator to help him breathe. While in the ICU, Lively developed a blood clot in his leg, and required a blood transfusion because of the multiple attempts at acquiring IVs, PICC lines, and central lines. (I never should have let so many junior residents try to place his central line.) After he was extubated, he refused to breastfeed, to take a bottle, or to eat, all things he did with gusto until a few days prior to his hospital admission. (So despite the fact that I am committed to breastfeeding and, as part of my medical practice, help women who are struggling with breastfeeding, I can't breastfeed my baby anymore.)

Lively went home with an NJ tube, a feeding tube that went from his nose to his intestine, into which breast milk was pumped 18 hours a day. When he was 10 months and 2 weeks old, I ran out of frozen breast milk and my milk supply had decreased so much that I had to give him a little formula. (I should have pumped more, remembered to take all my herbal supplements, and banked more milk along the way. In fact, I should be pumping right now.) When he was 11 months old, Lively still refused to eat or drink, and didn't tolerate feeds into his stomach, so his gastroenterologist and surgeon recommended a G-J tube to be inserted through his abdominal wall, running from his stomach to his intestine. (I should have tried harder to get him to eat.) Two days before the scheduled surgery, Lively pulled out his NJ tube, and so I attempted to put in a nasogastric (NG) tube. This is something parents are commonly taught to do at home. When I tried to place it, the tube went into his trachea instead of his esophagus, and caused his lung to completely collapse. (Perhaps I'm not fit to be a mom or a doctor.)

There's more. There's lots more, but I think you probably get the point. I'm a guilty mom by nature, and at times through this adventure, I've felt overcome by those guilty feelings.

But some things help me feel a bit better. Friends responding to my blog, sharing their own similar experiences and reactions makes me feel not so unique (a good thing, in these circumstances)! It has taken awhile, until quite recently, for me to realize that I'm a member of the parent-of-a-special-needs-child club. Reading others' blogs has been a wonderful welcome to the club, and I'm thrilled to contribute my own blog to this extraordinary community. I write about guilt, for my very first Hopeful Parents post, because carrying my guilt has been my entry fee into the club.

Hopeful Parents

In the first months after Lively started having seizures and was diagnosed with infantile spasms, I did something that isn't very characteristic of me: I didn't read about it on the internet. I did look up some basics that I could access from the hospital, just enough to know what sort of treatment options he might have, and what side effects he might experience. That was the extent of my reading for awhile. Web searches for infantile spasms and perinatal stroke led to terrifying sites that I just couldn't handle, at least not initially.

Because I had started writing a blog myself, eventually, I started reading other parents' blogs, and I noticed many had a link to the site hopefulparents.org. This is an online community of parents of special needs kids, and the more I read, the more I realized that reading the stories of people who had gone through what I was experiencing made me feel a little better. I had felt so alone, but in reading these other blogs, even though I've never met any of the writers in person, I felt little less isolated.

Recently, I expressed an interest in writing for hopefulparents.org, and I was absolutely thrilled to be invited to join the amazing writers for this site. On the 16th of each month (beginning two days from now!), one of my blog entries will be featured. Please check it out!

And check this out too:

He's not standing completely by himself, but he's doing really well, isn't he?

(Also, if anyone wants to help me formulate arguments for why I need iPhone 4 with the better camera on it, feel free.)

Home Again

We've been home for a week and a half. Later on hospitalization #6, day 3, the surgeons, who were his primary doctors for this admission, transferred Lively to the general pediatrics team, and after some high pressure from me to get him discharged, we got to go home on day 4. Whew.

We're trying to adjust, again, to being home. Annie, finally, seems to believe we're all going to wake up in the same house in the morning, so she's going to bed a little better at night. Despite how confusing the last twelve months must have been for her, she's rolling with the punches remarkably well. Annie turns 3 this month and is growing like a weed, both physically and intellectually. This is a blurry photo I took with my phone, but it's so her.

(Yes, I know I mentioned her smarts above --  she chooses to put her shoes on the wrong feet on purpose!)

Lively, oh Lively . . . Lively continues to have trouble keeping down his medication, even when we bypass his stomach. His surgeon and Pete and I think he does have gastroesophageal reflux, despite his 24-hour pH probe that says he doesn't. His g-tube has to be left to drain all the time because if we clamp it, his stomach can't handle the volume of secretions it produces, and he vomits. If we sing songs while dancing on our hands and do entertaining flips and twirls for him while pleading, he might swallow a quarter teaspoon of pureed food a day (total, over the course of 3 meals). Half the time, it comes right back up. The surgeon thinks he's going to need another surgery: a Nissen fundoplication. I'm pretty sure this is going to happen. The complications, and Lively's tendency to have them no matter what, terrify me.

I continue to be frustrated with the feeling that none of Lively's doctors are talking with one another, and that they are treating his symptoms instead of working to find a unifying diagnosis. Lively's multi-system issues don't fit nicely under one umbrella. So he had a stroke, so he had infantile spasms. That doesn't explain why he suddenly became a kid who cannot protect his airway, after eating and breastfeeding like a champ for nine months. It doesn't explain the reflux (well some docs think he doesn't have reflux, but he does). It doesn't explain the vomiting, the refusal to eat or drink to the point that he will become dehydrated and require IV hydration and enteral nutrition. It doesn't explain why he has twice failed extubation, once to the point that a respiratory code was performed in front of us. 

But, there's good news, and here it is:

I've been saying that Lively can sit for several months, and technically, this was true. But 6 days ago, something clicked or he just got a little stronger, and now, HE SITS! He sits for 30 minutes at a time. He is able to readjust his body when he is off balance and stay sitting. He can reach for a toy without falling over. He can hold the toy and move it around. He can put 4 whole fingers in his mouth and smile for me, while staying sitting! Yes, there is a pillow behind him, and it's not going anywhere anytime soon. But there isn't a person behind him. 

Also of note in this picture -- when Lively came home after his G-J tube surgery, I thought, well, we'll just put him in cute little button down shirts, hanging slightly open, and the tube won't be that big of an issue. Nope. It's an issue. After researching how to manage wearing clothes with a feeding tube in his stomach, something that, I don't know, millions of children in the country require, I was able to find ONE product online that sounded like it might work for us: tummy tunnels. They're iron-on patches with holes in the middle for the tube. Fortunately, the shape selection includes "rocket" which goes well with his robot shirt.

Isn't he scrumptious?

Hospitalization #6, Day 3

We're back. Did I mention that we left the hospital? We went home July 17, last Saturday, at about 11 pm. On Wednesday I went back to work. I had clinic in the morning (a new clinic I'm just starting for breastfeeding support, yay!) and in the afternoon I had a hysterectomy scheduled. Fortunately, there were 2 very capable senior residents operating with me, because half-way through the case, I had to run out of the OR and throw up in the garbage can. Also fortunately, one of my colleagues was available to come down and supervise the rest of the case. (My patient did really well, no problems, thanks a million to everyone who helped!)

I went home, and Pete was in bed, moaning. I crawled in next to him and whimpered a little myself. Pete's sister Penny and her husband Frank were staying with us to help with Annie and Lively, so while Lively napped, Annie enjoyed some aunt and uncle adventures. Well, she did for a few hours, until she started throwing up. And then Penny started feeling sick. And then Frank. And then our babysitter texted us to say both her kids were throwing up.

Twelve hours later, Annie was good as new, although the rest of us were gulping ginger ale and dragging ourselves from bed to the TV, where Annie happily enjoyed a day of videos. I slept most of the day, because I had been the least sick of all the adults and so had been up all night with Annie the night before. By 24 hours, we had all mostly recovered.

Pete and I assumed that Lively was the source of this. We thought that he had probably picked up something at the hospital or at a doctor appointment, and he had vomited quite a bit more than usual Tuesday night, and was better on Wednesday, so it seemed to fit. We all recovered enough to have a birthday party for Annie and Lively on Saturday July 24. Lively seemed a little tired and fussy during the party, but he took a long nap and was OK when he woke up.

Sunday morning around 5 am, I woke up to Lively throwing up. This isn't terribly unusual. However, this time he didn't settle down, but just kept emptying his stomach. His feeds were going into his intestine, and he seemed only to be losing stomach acid, so I didn't worry too much about dehydration. Two hours later, however, when there was no sign of the vomiting subsiding, we decided, reluctantly, to take him to the emergency room. I hated to do it, because I knew they would admit him, and I still thought we could keep him hydrated at home. We switched his feeds to Pedialyte, and Pete packed a bag while I cleaned up Lively.

By the time Pete was ready to leave with him, just a short time later, I considered calling an ambulance. Lively didn't look well at all. He was whimpering, gagging, and no longer opening his eyes or looking alert. He responded to us stimulating him, but sluggishly. Pete rushed him to the hospital, and only after getting quite a lot of IV fluid, Lively woke up and smiled at us. When we got there, he looked like this:

Lively is doing much better now. He's well-hydrated and feeling OK. He's not vomiting any more, but he's still having a lot of diarrhea, so we're still in the hospital. His feeds haven't been restarted yet (maybe today?), so my chubby little boy is shrinking before my eyes. Perhaps he'll get so hungry, he'll eat a sandwich!

Here's Lively today, feeling more like himself:

Perhaps later I'll write about how I feel like everything that happens to Lively is a side effect of some other intervention, and how I wonder if he would be a walking, talking, eating boy at home right now if we'd just left him alone. I also want to write about how I just found out that a little girl whose blog I've been following who also had infantile spasms died very unexpectedly a few days ago. I don't know this girl or her family, and her story is quite different from Lively's, but obviously, they have quite a bit in common. I found out about Samantha through hopefulparents.org, and her mother's blog is here. I am devastated for her family. I'm going to go hold my baby close now, and never let him go.

Lively the First

One year ago today, my grandfather died. It's astounding to me that it has been a year. Like I mentioned in my last post, I can't remember a time when my Lively (the one-year-old!) was not in my life. And although my son Lively was born just before my grandfather Lively died, it seems like I saw my grandfather a few days ago. 

I think of my grandfather every day, and miss him so much that my heart hurts, every day. I also forget that he's gone all the time. Something big might happen in my life, for the good or the bad, and I will think, I can't wait to call my grandparents and tell them about this. And it will feel like a shock when I realize that he's not there.

So much has happened in the last year, so many scary and busy and heart-wrenching days (as well as quite a few good ones) have occurred, that I'm fairly certain that my brain and my heart have been unable to accept my grandfather's death. It's just too much to process. Will I ever? Hard to say right now.

Here are some of my favorite photos of my grandfather, in no particular order.

This is Christmas 2008. Annie was 1 1/2, and I was pretty newly pregnant with Lively. My grandfather always looked happy like this, even when chemo made him feel terrible.

This is my grandfather holding Annie during her first birthday party at my parents' house in Kentucky.

January 2008. Annie is around 5 months old. My grandparents had us over for breakfast (blueberry pancakes). My grandfather always wore a kimono in the mornings!

Holding Annie Christmas 2007. She was 4 months old, and this photo was taken just before we left to come home to Ann Arbor.

Also Christmas 2007. My grandfather reading The Night Before Christmas to Annie and Lively the Second (my cousin Patrick and his wife Lee's little boy). I love this one.

My grandparents came to visit us in Ann Arbor when Annie was 8 weeks old. There are several photos I love from that visit.

I really like this one of both my grandparents.

Annie is about 6 weeks old in this one. This is also breakfast at my grandparents' house, something Pete and I always loved to do when we visited. I had to include this one because of the kimono!

My grandfather just before the start of my wedding.

My favorite. The best day of my life was the day Pete and I got married, and my grandfather gave a blessing at our wedding. Pete and I will always remember this moment in particular. I especially love this photo because of the look on my grandfather's face. You can tell he's saying something silly.

I haven't known exactly how to mark this anniversary (for myself), but I felt it was important to. I want to read this blog with my Lively one day, and I want him to be able to understand why I needed to name him after this great man. 

One!

Dear Lively,

How can it be that one year ago today, I met you for the first time? It seems like you were born just days ago, and at the same time, I can't remember what it is like not to have you in my life.

It has been a hard year for our family, my love. One year ago today was the last time I spoke with my beloved Granddaddy on the phone. He was very sick, at home with hospice care, and he had been quite sedated and sleepy for several days. After you were born, he woke up enough to talk to me on the phone. I told him that you had arrived, that all was well, that you were healthy and beautiful and perfect. And he said, "Of course he is. Why wouldn't he be?"

My grandfather was Lively Wilson, and he has always been extraordinarily special to me. When your father and I found out that we were going to have a baby boy, we instantly agreed that we would name you Lively, because we both loved my grandfather so much and thought there could be no better role model for you (with the exception, in my mind, of your own father, for whom you are also named). Your great-grandfather knew of your arrival, but I am sad that he wasn't able to see you in person. My heart broke when you were 7 days old and he died. I miss him every day. I wonder if he's somewhere that he can hear me talk to him, if he can see you, if he can watch over or guide you. I hope he can.

At the same time that I felt shattered by the loss of my grandfather, I felt whole and purposeful and hopeful by your presence in our family. Your personality was apparent even at one week old. You are happy! You are full of love. You are calm and cuddly. I instantly fell madly in love with you, and somehow I love you more each day.

I can't help but realize that your birthday is also probably the anniversary of your stroke. We can never know what happened with certainty, but you probably had a stroke due to some unknown complication of your birth. I have looked back at photos of your first day, week, your first months, to see if there is any clue that something was wrong. I have not found the slightest hint.

During your first year you have been hospitalized 5 times, not including your birth. You have been admitted to the ICU twice. You have had surgery twice, and you have been intubated 6 times. You may undergo surgery again tomorrow. You have had 2 MRIs and probably 50 x-rays. You have had NG tubes and NJ tubes. You have had your blood drawn 50 times or more. You have taken hundreds of doses of medication. You have had countless seizures. You have spent over 50 nights in the hospital, including tonight. It's all enough to make a fellow grumpy. But you look like this:

Your father, sister, and I love you madly, as do your many grandparents, aunts, uncles, cousins, and friends. Like your namesake, you seem to have a special charm that draws people to you. People can't help but grin when they see your beautiful, toothy smile.

My dream for you: be happy. Be healthy. Know that your family loves you. Continue to radiate optimism and joy. And heal, my sweet baby. Please heal.

Happy birthday, my precious Lively.

Love,
Mama

Thank you, updates

Thank you to all my friends and family members who send love and support our way. It helps us more than I can say.

Today is hospital day 17 for Lively. We're out of the ICU, on the main hospital floor. On Monday, Lively had surgery to place his G-J tube, and at the same time the surgeons removed one of his chest tubes. Having the G-J is going as well as it could be at this point, I guess. He seems to be tolerating it well, his pain is under control, and it's awfully nice to see his face again without all the tape and the tube going into his nose. It has been terribly hard for me, though, to see the tube sticking out of his belly, and to feel like this may be a better thing for him than the one going into his nose.

After surgery, the docs ordered a chest x-ray in the recovery room, and unfortunately, it showed that Lively's pneumothorax had recurred. Basically, his lung was no longer fully expanded. Lively still had one chest tube in place, and so they hooked this one back to suction to try to help his lung completely inflate. This seemed to work, so this morning they turned off the suction and planned to remove the chest tube this evening if his subsequent chest x-ray looked like his lung was still fully inflated, indicating that it had healed from the initial injury.

Unfortunately, Lively's lung collapsed again slightly after the suction stopped. This means he has to be hooked up to suction again for 48 hours, then put to water seal for another 24-ish hours (meaning that the tube is in and the system is closed, but there's nothing sucking air or fluid out of the chest cavity to help keep his lung inflated). Then if all goes well, maybe we can lose chest tube #2. If his lung is still not fully expanded, we start the 3 or 4 day cycle again.

Lively's last hospitalization was 26 days. It's unbelievable to me that we may approach that again.

Tomorrow is Lively's first birthday, and I'm very sad to spend it in the hospital. Very, very sad. I'm very tired, and very grumpy. And at the same time, I remember all we've gone through, how sick he was, how scared I was that I might lose him or that he may be damaged in terrible, terrible, permanent ways. So I look at his smiling face, and I try very hard to be grateful that I can hold him and kiss him and tickle him and love his whole fat and happy self.

Another trip to the PICU

Lively still has not been able to eat, and every week or so, he pulls his NJ tube out of his nose. Because of this, we recently saw a surgeon who recommended a GJ tube, which goes through his abdominal wall into his stomach, and also snakes down into his intestine. It looks like this:

This procedure was scheduled for this Friday, July 2. On Sunday night (June 27), Lively pulled his NJ tube out (again), and it's a very long, stressful process to have it replaced. At one point when Lively was hospitalized in April/May, we had thought that Lively would go home with an NG tube, which was something either Pete or I could replace if we needed to. The nurses had taught Pete and me how to place an NG, and it's something I've done in adults many times. Pete and I talked about it on the phone (he was at a conference in Colorado), and decided that I would put in the NG tube at home. For the long term, Lively needs his feeds put into his intestine, but we hoped to avoid another trip (or 2, or 3) to the hospital to have the NJ placed before his scheduled surgery, 5 days away.

I put the tube in on Monday morning (June 28). Lively was very fussy, but this is not unusual. He cried longer than usual after I pushed the tube in. Initially, I worried that I had the tube in the wrong place, but I listened with my stethoscope over his stomach while I pushed some air through the tube, and it sounded like it was supposed to. I checked this several times. Lively became pretty upset, and even threw up once, but I was able to comfort him, and finally he fell asleep. When he woke up, he smiled at me. He coughed a little, which was new, and when I listened to his lungs, they sounded terrible. He coughed again, I listened again, and they sounded better. Pete and I debated on the phone whether or not I should take him in to the Emergency Department. He looked OK, so I hesitated, but finally, I decided that I was going to worry until someone checked him out, so we went to the hospital. This is Lively in the ED:

He was calm, able to rest and nap. A pediatrician listened to Lively, and thought his lungs sounded OK. I had the tube feeds (breast milk) running through his feeding tube, and he seemed to be tolerating that well with no further vomiting. The doctor ordered an x-ray, and everyone felt that we'd probably be able to go home afterward. I took this picture of Lively getting his x-ray, thinking I would send it to Pete later, maybe when we got home, and we would talk about what a sweet, calm baby Lively is, even when he's velcroed in an uncomfortable position for a test.

 Then I saw his x-ray.

When you look at this, his right side is on the left side of the picture, so the tube is on the right side of his body. His stomach is on the left. So the tube is going down his trachea instead of his esophagus, down his right main stem bronchus, and then punctures through his lung. The fluffy white stuff on his right side is milk.

We were quickly taken back to the ED, and almost as soon as we got there, Lively started to have respiratory distress. The surgeons came down and took him quickly to surgery. The surgeon was able to put a small camera in his chest and suck out all the milk and irrigate the area. Then he put in a chest tube to remove the air and fluid around the lung to help it re-expand. This is a picture of Lively's post-operative x-ray:

Lively's lung didn't inflate right away. Here you can see the tube going from outside his body into his chest cavity. His lung is collapsed -- there is a dense white area from the middle-right side of his chest (shown in the left side of this picture). This is his lung, with no air in it. The outer part of his chest, which looks blacker has no lung in it. It's filled with gas, but this is all outside his lung. The surgeon repositioned Lively's chest tube, and finally his lung inflated. Then it looked like this:

At this point, his lung has reinflated, and he was doing fine. The plan was to watch him overnight and to try to take him off the ventilator in a day or two. 

This is Lively after we got settled into our room in the Pediatric Intensive Care Unit:

Lively did well overnight. On Tuesday (June 29) he was stable all day. Pete flew back from Colorado and got to the hospital in the early afternoon. All of Lively's vital signs were fine. The doctors planned to extubate him on Wednesday. Pete and I were skeptical. During our last visit to the PICU, Lively seemed ready to extubate after just one day on the ventilator, but it was instantly clear that he was not ready as soon as the breathing tube was removed. 

On Wednesday morning (June 30) the docs took the breathing tube out. Again, it was immediately apparent that Lively was not doing well. He was stridorous, breathing around 70 times a minute, and using all his accessory muscles to draw in air. The docs tried to replace the breathing tube, but his upper airway was so swollen, they couldn't get it back in right away. They used an ambu bag to push helium and oxygen into his lungs, and after the scariest 20 or 30 minutes of my life, they were able to intubate him again. In the process, his right lung collapsed again, and on Thursday morning (July 1) when it had not inflated on its own, the docs had to place a second chest tube.

Throughout the day Thursday, Lively lost all of his IVs. Anyone who tries usually has trouble drawing blood or starting an IV on him. The docs had to put in a central line in his right internal jugular vein. Because of this indwelling catheter, as well as his sedation, his Lovenox (blood-thinning medication) was restarted to prevent him from developing blood clots in his legs or around his central line. Also on Thursday, Lively had another MRI of his brain. 

On Friday (July 2), Lively started to wake up. The surgeons felt that he wasn't quite ready for extubation, but they weaned some of his sedation medications so that he would wake up a little and try to breathe on his own. He opened his eyes and looked at Pete and me, tried to cough, tried to cry, but couldn't because of the tube in his throat. It was absolutely heartbreaking. The good news on Friday: Lively's MRI looked great. The area of his stroke was still apparent, as expected, but there was no sign of any further stroke activity, and his brain otherwise looked normal. This is especially good news, because it makes the possibility of genetic disorders that are sometimes related to recurrent strokes and seizures quite unlikely. In fact, the neurologists feel like Lively does not need any further genetic testing to look for mitochondrial disorders, which are the particular disorders about which they were concerned. The testing involved a muscle biopsy, so I am very happy to spare him this.

On Saturday morning (July 3), the docs were able to extubate Lively. This time he was ready, and so far he's doing well breathing on his own. I think his throat is hurting him, because he tries to babble or cry, and then he grimaces and stops. He still has both chest tubes, and these are clearly bothering him. But he smiled at me today, and I even saw him do a happy dance for a few seconds, which, of course, made me feel completely happy for about 3 full seconds. It's a start.

After about six hours, I got to hold him again.

There have been so many things that have been excruciating about this week's experience. Being back in the hospital, back in the PICU, back on a ventilator, having emergency surgery, chest tubes, central lines . . . . and then knowing that all of this is happening because I put a tube through his lung instead of into his stomach. I've been a doctor for 6 years (which is admittedly not that long) and I've made mistakes in that time, but never one that has hurt anyone as severely as I hurt my own child.  I have said that I will be OK when he wakes up, when he's off the ventilator and breathing on his own, when I can hold him. And today those things happened, which is good. Better than good. Miraculous, wonderful, amazingly good. But when I leave the hospital late at night to go home and try to sleep, all I can think of is the sound of Lively's cry after I put the tube in him.

I understand that these things happen. I know now that when a child has swallowing difficulties, these things happen more easily. One of the attending doctors in the PICU, who has been in practice for many years, told me that he once did the exact same thing to his own child. (Pete says that when I heard this, he could see me take a couple steps back from the ledge.) If another doctor or nurse, or even Pete had been the one to misplace the tube, I know that I would believe that this is a known complication of the procedure. I would not blame that person, or feel that the person was an incompetent provider (or parent). I know that I was trying to do what was best for Lively, to help him, not to hurt him. But for now, I'm absolutely haunted by what I did.