Sunday, March 23, 2008

Life Changing

My sister-in-law just had her baby. Little Miss Payton Grace arrived nine weeks early weighing in at 2 pounds 11 ounces and 14.5 inches long on Friday. Talk about a flash back! Nearly five years ago this May, our tiny little Jimmy arrived - also 9 weeks early at 3 pounds, 1 ounce, 16.5 inches long. Both my sister-in-law and I had c-sections to take our little ones out for the same reason, pre-eclampsia. I just got off the phone with Jen, and boy does it bring back memories: the fear and uncertainty, the guilt of whether or not you somehow caused all of this, the feeling of being totally overwhelmed - not even sure what to worry about first, the longing just to hold your baby, and the desire to know beyond any shadow of a doubt that your baby would make it.

When our little Jimmy arrived, EVERYthing in our life changed on a dime. Our WORLD suddenly revolved around our baby; I know this is normal for every new parent, but when there's a chance your child just might not make it, the intensity is beyond words.

When Jimmy arrived, though tiny, he was breathing on his own and screaming lustrously. His existence surpassed my comprehension - so tiny, yet so very much alive. The doctor carried our child around from behind the curtain where they had taken him from my belly and held him near me so I could touch him and just look at him. It was a surreal moment gazing silently into my baby's big eyes - both of us equally confused. I was able to kiss him before they rushed him back to the NICU to ensure his stability. We had been told everything was progressing as well as could be expected for a baby of his size, and in my heavily drugged state, that was good enough for me.

Unfortunately, things turned around rather quickly. The nurses had attempted to give Jimmy his first feed through the feeding tube they'd inserted through his mouth down to his belly. This would've been fine, except for the fact that I'd been on an IV of an anti-seizure drug; thus, the hospital staff was supposed to wait about a day before feeding Jimmy, and somehow, this little tidbit of crucial information was not in the notes the NICU received. Thus, not long after they'd put food into his belly, he quite nearly quit breathing. They hooked him up to a ventilator and were able to keep him going. I remember when the doctor came into our room to deliver the news of Jimmy's decline; as he looked over the notes, he realized the mistake that had been made, and he was 'hot' to say the least. You see, when a baby whose mother was on magnesium sulfate is given food before that drug has the time to wear out of the baby's system, the baby's body cannot process the food. Usually, this well lead to a condition called NEC in which the baby would need surgery to remove a portion of the intestine that would have likely become infected; sadly, most NEC baby's don't make it. Somehow though, little Jimmy pulled through without ever developing NEC.

A couple days after Jimmy was born there came another very hard moment - leaving the hospital without my baby in my arms. I went home and made trips back to the hospital over the next couple of days, but it was killing me not to have him with me. I checked into the Ronald McDonald house by the hospital so that I could be within walking distance of little Jimmy.

While Jimmy remained at the hospital under the watchful eye of his doctors and nurses, I continued visiting him while myself trying to heal up from a c-section. About a week later when the staples were taken out, starry-strips replaced them. Unfortunately I learned the hard way that I was allergic to starry-strips. On top of the actual vertical scar from the c-section, I had staple scars, and now blisters covering the whole area. My belly looked about how I felt emotionally - completely torn up.

The NICU experience was a roller coaster ride. It was over a week before I was able to hold my baby and kiss him again. And even then, I was so afraid to hold him that I actually told the nurses, "No, I don't really need to hold him; I can wait until he's stronger." But I think the nurses knew this Mommy needed to hold her child for the sake of comfort.

Little Jimmy was intubated and taken off the vent, placed on a c-pap, back on a vent, then to a c-pap again. It was up and down - one day at a time. There were days I went to sit by little Jimmy's isolette that I was told it'd be best to not even stick my hands in to give him comfort - just to watch him as he shouldn't have any stimulation at all. There were other days that I went to see my child and was told I couldn't even go in because they were admitting a new preemie and couldn't have any visitors. As time went on and I was able to hold my child more frequently, there were still days I was told that he shouldn't be held. It was incredibly hard. I became an expert at reading doctors' and nurses' notes in his folder. I learned the lingo of the NICU. With the help of my case worker at the hospital, I broke through the yellow tape so that I could nurse my child on an every three hour schedule - even when the doors were closed to everyone else.

I learned that as hard as our situation was, it was far from the worst. I watched as Mommy's and Daddy's kissed their babies 'goodbye' before they went into surgery - uncertain of whether they'd ever see their children alive again. I felt the tension and desperation, from behind the curtain where I was nursing Jimmy, as nurses attempted to insert a scalp IV on a preemie who's other usable veins had gone bad. I listened to the baby next to mine, who was so tiny his cry sounded more like a meow. I observed a single teenage Mommy facing the horrors of the NICU by herself, her son having already had surgery to place a stint into his skull to alleviate a severe case of hydrocephalia. And a day or two before Jimmy would end up leaving the NICU for good, I sympathized as I watched the nurses repeating the same thing again and again to a Mama in complete denial of her baby's situation, a preemie born with cerebral pulsy.

And just when I was getting comfortable with my new homes - the Ronald McDonald house and the NICU, I was told little Jimmy was well enough to come home. I was thrilled with the possiblity of bringing my baby home, yet horrified with the thought of trying to care for him without the support from the hospital staff. I had seen other Mommies with their "fat" babies and their cart of flowers and gifts leaving the hospital every single day since my son was born, and every time I had seen them, I cried - with a feeling of jealousy and longing. When my turn finally came, I was feeling a little uncertain of my ability to handle a preemie - with no machines, daily doctors' rounds or nurses checking vitals.

We did bring little Jimmy home, but our journey of preemiehood didn't end there. There were lots of sleepless nights, lots of doctors visits, a handful of hospital trips, one ambulance ride and one surgery. Our world revolved around our boy and his health. We were vigilant parents with a quest to see our child grow strong.

It's a funny thing to think about - how things have changed. Those things that we thought were really important then mean nothing to us now. Eventually the focus had to shift from caring almost single-mindedly for our child, to caring for our child and our relationship as a husband and wife. There's nothing that'll strain a marriage quite like having a sick child, or worse yet, losing one. Amazingly, our little boy survived and so did our marriage.

When we left the hospital Friday, we took our big boy to the park at Lake Eola. He had patiently endured an afternoon of waiting around at the hospital, and he and I both had energy to burn off. I ran with Jimmy and played on the rides at the park, both of us screaming and letting off a bit of pent up anxiety. "You people are crazy!" I heard another little boy whom we were playing with comment excitedly. Compared to the other urban and ultra-hip mommies at the park, I'm sure I came across a bit on the wild side. It's good to be able to enjoy these carefree moments with my boy; it's good to have survived preemiehood; it's good to have come out on the other side as better parents and a healthy child. So what if I look like a homely, crazy Mama - I know I've got it good!


Cindy Lynn said...

What a blessing to be able to enjoy such sweet moments with Jimmy now, without always remembering all of the concerns in the beginning! And I have never seen you look homely a day in your life chica...ok maybe one or two when you refused to brush your hair in high school ;)

Anonymous said...

I remember those days of the no hair brushing. LOL! You and Katie were a bit on the crazy side back then.


Danielle said...

OK - I did used to, on occasion, not brush my hair for school; it was my own little silent protest to the uselessness of school ;)

And now, though I do brush my hair, it very often looks like I haven't. It's those mornings when I don't get a shower in (which sadly is more frequently than I'd like to admit)that really leave me looking crazy.

carol said...

What a sweet story and I know you don't think so, but you are truly blessed;)

michael said...

That was a really good recount of the experience. Brought tears to my eyes.