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.