What the caterpillar calls the end of the world the master calls a butterfly.-Richard Bach

The first time I saw this quote, I was walking in to the NICU at Egleston to see Finley for the second time. He was 3 days old. I thought little of the quote, just something that was an inspirational quote for an area of the hospital that was quiet and oddly calm--considering the patients that were dealt with.

Finley was in an area of the NICU called "ECMO Bay". Unbeknownst to me, this was the area for children that were REALLY sick. I knew ECMO was heart-lung bypass for infants, but I didn't know it was a "last resort" for them. I'm thankful for that ignorance.

The first time I saw Finley, there were two other little boys on either side of him, Aiden and Braxton. Braxton was born with Group B strep and was not expected to live (I learned this from his grandmother, not due to any impropriety on the part of the staff). I knew nothing about Aiden, just that he looked terribly small compared to Finley.

...One thing that you have to understand is that the NICU operates on what we called "NICU Time". Our lives revolved around visiting hours, "rounds" and surgeries (where we had to wait in the lobby for hours at a time). All of the mothers lined up outside the lactation room, waiting to pump breast milk for children who were too weak/incapacitated to nurse, and we would all talk about the various surgeries our children were having. We would "joke" about the odds our children had for survival--all of us striving to find some way to cope with what was happening. It was its own little world and, although we rarely knew each other's names, we had a kinship that has burned their faces into my memory forever....

The next day, I saw the quote at the entrance to the NICU. It was a sign that they placed over the speaker where you requested entrance to the unit. Braxton was still on Finley's left, but the space on the right was empty. I assumed(/chose to believe--in my highly hormonal state--) that Aiden was fine and had been released from the NICU. I asked the nurses and all they could say was that it violated patient confidentiality to tell us. Later that day, Gavin told me that the sign meant that a baby had died in the unit. Upon hearing that, I felt like my heart had been ripped out of my chest...perhaps because I'm a mother and couldn't bear the loss of my children, perhaps because I know that the sign could easily have been posted for my own child.

It wasn't the last time I saw that sign and it broke my heart each time I saw it. I treasured that my own child was able to remain a caterpillar in my care, but I cried for the parents that knew the sign was for their own little butterfly.

When I grow up....

I have been at a career impasse for some time...probably since birth. I changed majors thirteen times in college, finally choosing my major based on what I could finish in four years--not the preferred way to do it, I might add. I went on to grad school and paid $20,000 to become an audiologist. I knew halfway through grad school that I would not end my career in audiology (I have this pesky problem that earwax makes me gag). After five years in audiology, I moved on to pharmaceutical sales. I loved it for the first couple years, but then it became tedious and a little boring. The other problem was that, by then, I had a baby. He was at day care by 7:15 and didn't leave until 6 in the evening. Maybe I'm old fashioned, but that is not how I want my child raised. I wanted to see him more than 2 hours each day--I felt he needed more than that. So, I quit. I got a part-time sales job that just sucked and, shortly after finding out we were expecting Finley, I quit.

The original plan was to open a home-based business selling hospitality gifts for wedding and convention guests. I got a little distracted when Finley was born and it's never happened. I got into Arbonne with the intention of making the money to fund the gift business. I still really love the products, but, now that I've lost momentum, I'm having a really hard time getting back into it--despite the fact that they've changed the compensation plan (my largest complaint about Arbonne: it used to cost $29 to become a consultant. If any of my customers ordered more than $100 worth of stuff, it made more sense for them to become a consultant than to keep buying from me...so my profit goes from 35% to 2%. Ooh. How enticing.). Now I'm looking at going into nursing, as well as opening a travel agency franchise.

Ugh! I read this and it drives me nuts! Why can't I be truly passionate about SOMETHING?! ANYTHING!! With all of these failed professions, it just makes me wish I was truly good and passionate at something enough to want to see it through. Am I lazy? ADD? Are my standards too high that I expect to not dread going to work? Or am I spoiled in my position that I don't HAVE to work? I want a profession that I can put my husband and children first and be available to be home with my kids if they're sick, be room mom and be a chaperone of field trips. That's not exactly conducive to Corporate America. It limits me to home business or working nights. The thought of failing at something else is depressing to me. I've put a lot of our money into home businesses and they haven't panned out. I don't want to waste any more of our money doing this, but I don't want to be a Stay At Home Mom either.

So, I guess what it boils down to is that I am perfectly suited to be a trust-fund baby and little else. Since it's too late to become a trust-fund baby, I guess I'd better figure out what I want to be when I grow up.

Date Night with Kids

Since Finley can't be left in the care of a non-health care professional for more than a couple hours, Date Night has become something of a challenge for Gavin and I. Last night, we tried a new concept: We'll put the boys to bed and have Date Night at home. We planned to make fondue and watch The Dark Knight (finally...I think we're the only people who didn't see it in theaters) and just snuggle on the couch and hang out. I even had a cup of coffee to ensure that I'd still be awake for the movie (I'm rarely awake past 10...this was going to be difficult)

We threw the boys in the bathtub at 7:30, read stories, got the last glass of water, snuggled for a little while and came downstairs to set up our fondue and movie! Woo hoo! A little quiet time for Mommy and Daddy! By 8, the movie was in, the fondue was melted and we were set to go!

Here's how it went down:
8:00: Opening credits roll. First apple goes into the cheese. First sip of beer (Gavin) and vodka tonic (Amy)
8:05: Shaw starts crying upstairs. It turns out that he left his favorite dinosaur downstairs. Hit pause.
8:06: Dinosaur Crisis averted. Hit Play.
8:12: Finley starts crying. Crap. We forgot that he was due to eat at 8. Hit pause.
8:25: Finley is fed and is no longer showing any interest in sleep. Bring him downstairs and set him up with toys. Hit Play.
8:45: Finley starts crying and eye-rubbing. Yeah! He's tired! Hit pause.
8:55: Come back downstairs with Finley who is again giggling and playful. Hit play.
9:00: Remember that Finley still needs his breathing treatment. Dang, that thing is loud. Hit pause.
9:05: Breathing treatment completed. Hit play.
9:40: Finley is actually, genuinely tired at this point. Time to snuggle him to sleep! Hit Pause!
9:41: Shaw is awake and crying again. Call Gavin to take Finley on while I get Shaw settled down.
9:50: Finley is asleep and in bed. Shaw is not.
10:00: Shaw is asleep. Finally. Hit the damn Play button.
11:00: Is it time to feed Finley again already? We don't have a bottle ready, do we? $^%&! Hit friggin' Pause. AGAIN.
11:15: Finley is fed. Hit Play.
11:40: How flippin' long is this movie?! I haven't been awake this late in months...maybe years.
12:10: Yeah! We made it through an entire movie! We still have to make bottles for tonight, don't we? Well that was lousy planning on our part.
12:30: Should we end Date Night with a make-out session or get an extra 20 minutes of sleep?
12:31: Zzzzzzzzzz.....

Obviously, Date Night is a work in progress.

Changing out the car seat

Wow. My baby is out of the "bucket". To anyone who doesn't have kids, that's no big deal. Everyone else knows that this is a bittersweet moment. Finley is no longer an itty-bitty baby, but turning into a real kid. The road has been rocky and there was a significant chance that he wasn't going to make it to this point.

When I was about 30 weeks pregnant, my OB noticed that I was carrying approximately an additional half gallon or more of amniotic fluid. I was dispatched to a perinatologist who diagnosed our unborn child with a condition called Congenital Diaphragmatic Hernia. This is a situation where the muscle separating the abdomen and the chest (the Diaphragm) doesn't form fully. This allows the intestines, and sometimes the liver and stomach, to invade the chest cavity, thus preventing the lungs from developing (the buildup of amniotic fluid was from the baby's inability to swallow. Our child's esophagus was compressed from all the other stuff in his chest). We were given a 50% chance of survival.

Gavin and I have never wanted to know the sex of our child before he/she was born. In this case, we chose to find out. We felt that if we were only going to know this child for a short time, we were going to know as much for as long as we possibly could. We also felt that building a relationship with him/her would aid with our connection and increase the odds of survival.

To our surprise (okay, my surprise. Gavin was certain) it was a second little boy. Here was the problem with another boy: WE DIDN'T HAVE ANY NAMES!! Gavin and I picked out the names for daughters, but could never agree on boy names. It took us forever to come up with "Shaw" for our first son. Now, we had the task of finding something appropriate for this child.

It turns out that our son's condition was instrumental in choosing his name. Gavin and I are both of Irish descent, so we wanted a name of Gaelic origin. As we looked through names, we saw Finley--a Gaelic name meaning "fair warrior" and knew that had to be our child's name. There was no question after that moment. Our son was a Finley.

I spent the next several weeks on bed rest. If we were able to prevent Finley from being a preemie, his odds of survival increased significantly. I spent that time laying on my side in the living room, laying on my side in my bed and laying on my side in the hospital every time I went into premature labor. Who knew doing nothing was so exhausting??

When the Big Day finally came, I actually had to be induced. It turns out my uterus was so distended from all the extra fluid, I COULDN'T go into labor on my own. We headed down to the hospital where they started the pitocin. 25 minutes later, they came in and turned off the pitocin drip--it turns out they didn't have an ECMO (essentially, it's a heart-lung bypass machine for infants) bed at the children's hospital where Finn would be taken after delivery and stabilization. Unfortunately, they couldn't stop the contractions, so I got to stay while they shot me up with MORE of the fun drugs they give women who are going through pre-term labor.

The hospital did manage to stop labor and send me home, only to call me back two days later when a bed became available. We tried for a normal delivery, but it wasn't in the cards. Finley's heart rate dropped and we were rushed to the OR for an emergency Cesarean. Anyone who has had the emergency C knows that it's freakin' scary. I panicked. I don't know if it was the sudden realization that my child--who was safe as long as he was inside my body--was now on his own and I had NO idea or control over what would happen or the realization that he may not live (it was easy to push that fear aside as long as he was inside me). I was so freaked out that they had to put me under general anesthesia for the delivery.

I woke up a couple hours later to be told that Finley was born at 6:48 p.m. and weighed 7 lbs 10 oz and was 20 inches long. He came out pink and screaming and beautiful. He was rushed up the NICU where he was stabilized and sedated. Shortly thereafter, he was sent over to Scottish Rite at Egleston where he was set up in ECMO Bay in the NICU. He never needed ECMO, but, thankfully, it was there if he did.

The repair of Finley's hernia took place when he was 6 days old. They were able to do the surgery laproscopically, so there was less scarring and they were able to use existing tissue, which greatly decreased the odds of recurrence. Our child was going to live.

Finley remained in the hospital for 50 days. Gavin and I went nearly every day to see him--I went during the day, he went at night after work (Keep in mind that we have another child who still needed us--although he's not mentioned much in this post, he was a huge factor. Thankfully, he was in a day care that took excellent care of him until I could get there.). During that time, we discovered that he aspirated (liquids went down into his windpipe when he drank), had reflux, had a heart defect, a pectis (sunken chest syndrome), he became a morphine addict and then a recovering morphine addict. This is all in addition to having only half of a left lung (the right one is fine)

So, Finley is home and is now 10 months old. He's pretty normal for a kid who started off as he did. He's starting to crawl and babbles constantly and is just the happiest child I've ever seen. He still has really hideous reflux and throws up whenever we feed him more than 4 ounces of formula at a time. We have to feed him every three hours 'round to clock to keep him growing, which makes solid sleep a precious commodity around here. Since his reflux is not getting any better and we're still having to give him half of his meals through a feeding tube threaded through his nose down to his stomach, we've made the decision to have a surgery performed on him that will tighten up the opening to his stomach and allow him to take more than a little food at a time. This surgery will also place a G-tube: a feeding tube that goes directly to his stomach. It took me a long time to accept this as the next course of action, but I honestly embrace it and anxiously anticipate it at this point! I'm tired of making him cry every time I put that damn tube up his nose. I'm heartbroken every time he cries from acid coming into his esophagus. I'm tired of having stomach cramps for three days before he has to be weighed. I'm tired of crying every time I feed him because he won't take more than an ounce or two by mouth. And all of these are just my emotions about this--it doesn't even touch his physical discomfort about any of it. The surgery is February 2nd and it can't come soon enough.

So, yeah, something as simple as changing out a car seat may be no big deal to some, but, considering we may not have been able to use the car seat in the first place, it's an historic moment.