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?