Scarlett's No Good, Very Bad Year (with happy ending)

I meant to do this post around Scarlett's birthday, but the new year is just as good.

I wanted to explain everything that went on with Scarlett this year, both for people who were wondering but never asked, or who did ask and didn't get a great explanation (partly because I didn't want to explain everything back then, partly because I'm just now getting a grasp on what exactly is going on). Also, I want to get it all down before I start forgetting the details.

When Scarlett was born, everything seemed fairly normal. The doctors noticed a few small things that were abnormal, including a hemangioma, or malformed blood vessel, on her neck. Here's a picture where you can see it pretty well, right under her ear. It looks like a big bruise, and it's something that should go away in a few years.



But otherwise, everything looked fine and they sent us home. Then it was Christmas and then it was New Year's and then she was about a month old, she started having some difficulty breathing. She'd have a hard time catching her breath after a big cry, and she had to stop a lot to take deep breaths as she was eating. After several pediatrician's visits and two hospital stays where they ran tons of tests and found nothing wrong (diagnosis: bronchiolitis), the doctors finally started to take us seriously on her third hospital admission at 5 weeks old.

During that third visit, which began at 2 a.m. with the emergency room doctors putting her on a breathing tube and ended up lasting two and a half months, much of it in intensive care, we learned lots of things about Scarlett.
- She has tracheomalacia, which means the muscles in her airway didn't develop all the way and weren't strong enough to keep her airway open all the time. Sometimes when she was crying or coughing, her airway would close completely. Thankfully, as her muscles grow stronger, this problem should be completely resolved.
- She has several brain abnormalities, the biggest two being an abnormal cerebellum (controls motor skills and movement) and gray-matter heterotopia, meaning there's gray matter where white matter should be.
- In her heart, there was an open duct that should have closed when she was born but didn't, which was causing pulmonary hypertension, or high blood pressure near the lungs. She also has an atrial septal defect, or a hole in her heart.
- She has severe acid reflux.
- She also had strabismus, or crossed eyes, caused by weak eye muscles. That was corrected this September through eye muscle surgery.

Because she had abnormalities in several different areas (brain, heart, airway), the doctors wondered if she had a genetic disorder. (The one they threw around was Aicardi syndrome. One nurse warned me not to Google it, but of course I did and immediately regretted it.) Several months later, all her genetics tests came back normal.

In the meantime, though, we lived in the pediatric intensive care unit at Nationwide Children's Hospital. Scarlett was not doing well. She came off the respirator but couldn't come off the C-PAP (a machine that continually pushed air into her airway to keep it open), which meant we were stuck in ICU. She had pneumonia or something like it, and would mostly cough and cry all day long. Some of her coughing fits would last for nearly an hour, and end in her turning blue and several nurses and doctors running in to get her oxygen levels back up. Other times, she would cry and cry and cry until they gave her an extra dose of sedatives to make her fall asleep.

Because I was still on maternity leave, I usually stayed at the hospital from about 8 or 9 a.m. to 11 p.m. or midnight. My mom took a lot of the night shifts, and Jason's mom or Jason did the rest.

Because she still struggled with breathing while eating, Scarlett stayed on the feeding tube. It was an NJ (nasojejunal) tube, which moved food continually through her nose directly into her small intestines. She had several EEGs during the hospital stay, monitoring her brainwaves to look for seizure activity. The first showed seizure activity, so she went on anti-seizure medication. However, after several subsequent EEGs came back clear, we found out that the first test had been interpreted differently by two doctors. The doctor with more experience saw no evidence of seizures. So she came off the anti-seizure medication.

And that's basically how it went. We would think we were starting to understand what was going on, and then we find out we still knew basically nothing.

Well, we knew a lot, but none of it really explained what was going on or what was going to happen with Scarlett.

Possibilities the doctors warned us to prepare for:
- She might have a genetic disorder.
- She might have a neurological disorder.
- She might be mentally retarded.
- She might have cystic fibrosis. (Reassuring thought from a nurse on that possibility -- "The life expectancy for CF used to be in the teens, but now a lot of people live into their 20s!")
- She might never speak.
- She might struggle with crawling, walking and other motor skills.
- She will probably experience seizures.
- She might need a tracheotomy.
- She might need a permanent feeding tube.

(Doctors aren't the most optimistic people you'll ever meet.)

Horrible things Scarlett endured that I wouldn't wish on another baby:
- Being poked and poked and poked again with a needle by an intern who apparently had no idea how to put in an IV.
- Having three different nurses unsuccessfully try to catheterize her in one night.
- Going through several days of withdrawal after becoming addicted to painkillers and sedatives.
- Having a feeding tube shoved down her nose, down the back of her throat, into her stomach, then yanked in and out for about ten minutes until it was threaded through to her intestines. Repeat at least a dozen times, every time she pulled the feeding tube out.
- There's more, but I'll stop.

Eventually, we were able to leave the hospital. This was after a surgery to close the open duct in her heart that was causing the pulmonary hypertension, and after putting her back on the respirator for a week to give her body a chance to get over whatever was making her cough so much. Luckily, she was able to come off the C-PAP quickly afterward, because if she hadn't the next step would've been a tracheotomy.

On St. Patrick's Day, we brought Scarlett home, with her feeding tube still in place and a bunch of equipment to give her oxygen while she slept at night and during naps. I was already back at work by the time she came home, so our first challenge was lining up childcare. We had found a daycare before she was born, but for a lot of reasons (like, for example, they couldn't have dealt with all her medical equipment) we decided not to send her there. Luckily, I ended up finding a nanny online who was available at short notice and has ended up working out better than I ever could've imagined.

When we first got home, Scarlett didn't really want to be held by anyone, not even me or Jason. She was very apprehensive of people she didn't know (so most everyone). She mostly wanted to sit in her bouncy seat all day long.

For bureaucratic reasons (we had to wait until she could be scheduled for a test to see if she still needed it), she stayed on the feeding tube for two more months. After the feeding tube did come out, the struggle became getting her used to eating normally again. She refused bottle after bottle, because after being fed continuously for so long, she didn't remember what being hungry felt like. The medications she was on caused her to throw up almost daily. At one point, she was eating so little we almost ended up back in the hospital. But slowly, slowly she got better.

Here's where we are now: Scarlett is no longer using oxygen at all. She sees physical, occupational and speech therapists who say she's very bright, and doing fine cognitively. She has not yet had a seizure. She's about three months behind developmentally, which makes sense when you take into account the near three-month hospital stay.

We have been working hard with a physical therapist every week. Scarlett has made a lot of progress, she's now crawling and pulling herself up and walking along furniture. She moves slowly and deliberately, and she struggles a bit more than the average kid to figure out how to do things. But when people ask if Scarlett's OK now, I can honestly tell them yes.

We're lucky that many of the awful things we were warned about didn't come to be. But through this experience, I've met other families whose endings aren't so happy. The genetics tests didn't come back normal. The surgeries didn't go well. The feeding tubes didn't come out. And I wonder why we got so lucky and they didn't. That's the hard part. The good part is getting to know them has helped me see that no matter what comes to be, I'll be able to deal with it.

So that's the story. Now for the pictures. I haven't shared most of these pictures before because they made me sad, but I'm ready to now. This first picture was taken on a good contender for the worst day of my life. Shortly after her MRI results came back as abnormal, Scarlett was hooked up for her first EEG test. She hadn't opened her eyes in days, and I hadn't been able to hold her since we arrived at the hospital. The nurse on duty asked me if I'd taken a picture. I told her I didn't want to remember this day. She told me that one day I'd be glad I had the pictures, so I could remember how far we'd come from then. She was right.

A look at all the equipment she was hooked up to:




Scarlett's first day off the respirator. She seemed to be doing really well at first, but she started struggling to breathe again quickly and went on the C-PAP machine.
C-PAP:

And these were on our final days in the ICU, when Scarlett finally came off of all her breathing equipment:

And that's Scarlett's year in a (very long) nutshell. I hope it makes sense ... it's a lot of stuff to condense! If you have any other questions, please don't be afraid to ask.