Wanted: A Thicker Skin

I am not brave.

While leaving for my High School Senior Awards Banquet, I drove through our garage door. (That's enough snickering, you.) The how and why aren't really important here, but I backed right into that sucker. The minute I heard the metal crush and the glass crash, I went numb. Pull the car forward. Get out of the car. Look at the back end of the car. Do not step on the glass. Go upstairs. Call Mom and Dad at work (this was clearly pre-cell phone era). Call boyfriend since I can't get Mom and Dad. Go back downstairs and wait. Once the initial shock wore off, I panicked. I stood there, cartoon-like, rubbing my eyes and blinking hard in the attempt to make the scene disappear. Then I promptly threw up on my front lawn.

I am not brave.

When I was in graduate school, I worked at the University of Pennsylvania in their very busy Labor and Delivery Unit. One night, an emergency bell was sounded from one of the delivery rooms. When you are an L&D nurse, you simply run. You are wired differently than other people. While most people would run FROM an emergency, when you are an L&D nurse, you run towards the commotion. You just do. Since I had NICU experience (No, the irony isn't lost on me either), I went directly to the infant warmer bed to assess the baby. He was grey-- not blue. He was past blue. Again, I went numb. Check the cord for his heart rate. Good rate. Turn him so that his head is to my body so his airway is easier to access. Reposition his head. Flick his feet, rub his back. Grab the ambu bag. Turn on the O2. Pinky finger under his chin, tilt the airway open. Seal the mask around nose and mouth. Positive Pressure first. Still no spontaneous respirations. Check the cord. Good rate. Bag him. Not too hard, don't blow his lungs. Bark out orders- call PEDS now, we need them 5 mins ago. Small respiratory efforts. One minute in. Mentally mark the time. Weak cry. Starting to pink up. Here comes PEDS, let them take him. As I stepped away from the bed, the Neonatology Attending looked at me and said, "Excellent job. You did great." I smiled, calmly left the room, then ran to the locker room and cried for 5 minutes straight.

I am not brave.

At 25 & 6/7 weeks, my water broke and Maggie was on her way. After and initial string of expletives, again the numbness set in. Call Dan. Call Mom. Call Beth. Call. Call. Call. Get in the car with Pam. Breathe. Stay calm. Breathe. Change into gown. Hook up to monitors. Watch for contractions. Breathe. Here's the IV. Fluids will help wash out the contractions. Get ready for 8 weeks of bed rest. First Ambulance ride. Small talk with EMT. Breathe. Give my own report at the (VERY YOUNG ALMOST TEENAGE LOOKING) resident who meets me in the hallway. Watch TV. Watch the Mag Drip. Stay completely still in the bed. Try not to pay attention to the contractions. Breathe. This position is really uncomfortable. Ring the nurse. Turn to my left side. Sneeze. Oh God, I sneezed. Big gush of fluid. Lots of pressure. Baby's coming. Same resident checks me. Five centimeters. FIVE. There is no going back now. And I begin to howl. Not cry. Not sob. Howl. At the top of my lungs.

I am not brave.

On Friday, I noticed Maggie's GTube was leaking. The tube needs to be changed every four months, and it was time. So I planned to change the tube Friday night, when we arrived at my aunt's house for the weekend. We arrived late, and while I had an extra tube with me, I didn't have all the supplies I needed. I decided to wait until Saturday morning, after Dan was able to go to CVS for me. I rocked Maggie to sleep, and put her upstairs in the crib. After a couple of hours, she woke up crying. I took her out of the crib and settled her down again. She fell asleep, and I put her back in the crib. She was quiet for a couple of minutes, then started crying again. It was late, I was tired. "Honest. To. God. Maggie. It is 1:30 in the morning. If you don't stop crying and go to sleep, I'll..." (What I said after the dot-dot-dot probably does NOT qualify me for mother of the year, incidentally.) I let her cry for a few more seconds, then went to get her. As I lifted a screaming Maggie from the crib, I noticed that the pump tubing was not attached to her belly. "Great. Just great. Now I'm going to have to clean up a mess." I went to reconnect the tubing, and found that Maggie's entire GTube had come out. Keep in mind that the GTube is held in place in Maggie's stomach by an inflated balloon. The balloon is about the size of a quarter. The hole in Maggie's belly is the size of a pencil. I panicked when I realized that the balloon was still intact, but outside of Maggie's body. Scoop up the baby. Wake up Dan. Run downstairs. Get some warm water to wipe up the stomach acid and undigested formula that are leaking from the hole in her belly. Hope her skin isn't burning. Test the new balloon. We have no lubricant. Steady pressure, follow the tract, hold her down so it will go in. Don't pay attention to her screams. Inflate the new balloon. Scoop her up, comfort her, whisper in her ear. Ok, ok. We're done. That's all. I'm so sorry, Magoo. I'm so sorry. My mother happened to get up right as I was bringing Maggie back upstairs. I told her what happened, and started to shake. She held me while I shook and cried. I didn't sleep the rest of the night.

I am not brave.

~Sara

Better than Letterman

Top Ten Things To Do During Your First 103 Degree Fever
as told to Mommy by Maggie Daley

10) Act completely healthy so that your mom takes you to the mall all day before she figures out you're sick.

9) Wake up from your nap really grumpy and ON FIRE so your mom has to take your temperature and give you Tylenol.

8) Go to bed at the regular time, only to wake up 2 hours later even HOTTER than before. Make your mom call the pediatrician at 11:30 at night.

7) Scream like you're dying during the cool bath your Dad puts you in at 11:30 at night.

6) Wake up at 5am, and make your mom take you downstairs to sleep with her on the couch.

5) Don't sleep on the couch. Watch the same 3 episodes of "Miss Spider's Sunny Patch" over and over again.

4) Look extra pathetic when Grandma comes over so she'll buy you a present.

3) Scream like someone's pulling out your toenails when your mom wipes your runny nose.

2) Convince your mom your brain cells are frying by talking in your sleep and looking at her like you don't recognize her.

And The Number One Thing To Do During Your First 103 Degree Fever Is:

1) Make a game out of pulling all the Kleenex out of the box one by one. Your mom won't yell at you because you're so sick and she feels bad for you!

~Maggie, as told in a fevered haze to her mommy

Well, as long as she LOOKS good...

Here's the link to the Orthotics that Maggie will have. They look different (read: better) than I had anticipated. For now, she will have the ankle ones. If, as she gets older, she still is having trouble with walking and standing, she may need the longer ones.

I got them with ladybugs and butterflies and little pink straps. FASHION FIRST, people!

http://www.surestep.net/smo.php

~Sara

Ease On Down Those Barbie Toes

Maggie is crawling everywhere! It started slowly, but over the last few weeks, my Peanut is UNSTOPPABLE! It's been really fun to watch her explore her world in a different way. It must be so liberating for her! And, while it means that I have to chase her around to make sure she's not getting into something she shouldn't, I am SO PROUD of her! Maggie is also beginning to pull up to stand. She is still extremely wobbly, and her muscles aren't strong enough to support her body for long periods of time. It seems like her ankles and knees buckle, and after a moment or two, she collapses to the ground. She reminds me of Scarecrow from The Wizard of Oz, right after he gets off his perch!

Our Physical Therapist, Christie, is also concerned about Maggie's lack of muscle tone. Evidently, hypotonia is common in preemies. Regular PT will help build Maggie's muscle strength. The problem with her pulling to stand when she is so weak, is that she does it incorrectly. Because she is so unstable, Maggie flexes EVERY muscle in her body to stand; she gets rigid in order to stay upright. Unfortunately, this means that she does alot of "toe standing". Think Barbie:

Maggie needs to learn to bear weight through her legs and heels. The longer she stands on tip toes, the more chance there is that her Achilles' Tendons will shorten, causing permanent damage. There is a surgery that could release her tendons if necessary, but obviously, we would like to avoid another surgery altogether. So, next week, little Peanut will be measured for leg orthotics. They will extend from the back of her calf, flex her ankle and wrap under her heel. This will force Maggie to put her heels down when she is standing, and hopefully get her closer to being able to stand independently, and eventually learn to walk.


I don't know how long Maggie will have to wear the leg braces. I guess it just depends on how she does. We will be adding monthly in-home Physical Therapy, in addition to our twice monthly regular physical therapy, just to make sure Maggie is adjusting to the braces in her home environment. I'm a little overwhelmed with the news of the leg orthotics, and the addition of yet *another* appointment. So far, we're up to OT every week, Speech every week, PT twice monthly (and now a second PT monthly), GI every 2 months, Feeding Clinic every 3 months, Developmental Peds every 3 months, and regular well-child visits with our own pediatrician in between. Oh, and I'm still working 3 days a week, so I cram all the appointments into the other 2 days.

It does seem that the surgery was the right choice for Maggie, though. She has gained 5 pounds in the three months since surgery, and weighed 18 pounds 9 ounces at our last doctor's visit. She has thrown up twice since that first time in the beginning of September, but it doesn't seem to be a repetitive problem. She is still struggling to eat, and takes about 1-2 ounces of formula by bottle, and maybe 2-3 tablespoons of baby food at a time. She still refuses any table food, and anything with texture still causes quite a gag reflex. We are working with our Speech Therapist, but it seems that time is the only thing that will really make a difference. Maggie can now swallow one or 2 little "puffs" without too much drama, and, when hungry, actively puts them into her mouth (a BIG thing for a kid with oral aversion).

I struggle with frustration over the whole eating thing. Most of the time, I am able to be patient and positive with her, but I find myself saying things like "It's just FOOD! Just eat it!" And, of course, feel terrible. It's not her fault. She is trying her best. But when a "feeding" is 15 agonizing minutes to get her to take 10 bites of puree, then 15 mins of persuading her to take an ounce of formula, then 20 mins of trying to get her to sit still long enough to finish the rest of the feeding via tube: well, it's just plain frustrating.

Lest you think I am in the depths of a preemie-mom melt down, I am proud to tell you all of my Magoo's accomplishments. Maggie is the sweetest, funniest, smiliest, calmest, NOSY-EST (others might call it curiosity, but really she's just nosey) baby in the world. She has started to hug me now when I see her in the morning, or when I pick her up from the babysitter. She still only says a few words, like Daddy and Doggie and Baba (bottle). But every once in a while, particularly when she's upset or crying, I'll get a good "Ma. Ma. Ma!" She knows a few signs, like "light", "bubbles", and of course the ever popular "All done!" She thinks she's smart, and the minute her cute little butt touches the dreaded high chair for a feeding, it's "All done!" left and right. (I've politely informed her that *I* will determine when she is, indeed, "All done!") She loves to look at books, loves to dance, and has started to show some interest in kiddie TV shows (The Wonder Pets, Backyardigans, Sesame Street, and Miss Spider are the only ones that hold her attention longer than 17 seconds).

She loves music and singing. One night, when I was rocking her in her room, she started to hum. At first, I thought she was just soothing herself to sleep, but she was looking up at me and humming louder and louder, almost trying to get my attention. I realized that Maggie was asking me to sing to her. The minute I started to sing, she got quiet, and stroked my cheek with her hand. I could barely keep from crying to finish the song. Her favorite is the Lullaby from Mary Poppins: http://www.youtube.com/watch?v=nPw6QBSggls
(those of you that know me, know I can actually give Julie Andrews a run for her money).

Moments like that make it all worth while...

~Sara