Fresh breath of air

And so, the saga continues... After being born, the birthing staff hastily intubated him and rush him to NICU III. Despite his brutish effort to breathe on his own, he stopped. And with his failure to breathe came the failure of his heart to beat. His heart stopped for about eight minutes before the doctors were able to resuscitate him. Such news was not encouraging, and that night James and I couldn't sleep. The little bit of sleep I did manage to have, left me in a pool of feverish sweat. But there was one thing we could say: Our son was alive!

The next morning, twice the hospital staff tried to tell us he didn't make it through the night. Luckily we had just visited him and new their information was not correct. But Jesus people! Now, being that I had been bed ridden for ten days, I couldn't walk and my first poop was miraculous. I had to be wheeled around to see my son, but when I did, I was flooded by about every and any emotion I have ever felt. It was very difficult to process and I couldn't even find the ability to cry. Terrified to touch him, I gently placed my finger in his microscopic palm. I then decided not to touch him for a while to prevent the chance of him getting sick. He was a terrifying sight. There were tubes all over his body, his skin was transparent, his intestines were visible, and he seemed so unreal.

For the next month I tried to keep myself emotionally detached out of the fear that he wouldn't make it. It wasn't intentional, but I couldn't bring myself to invest in, what seemed to me at the time, to be inevitable. Though, I visited every day (sometimes twice), hoping I would be wrong.

Each day seemed to be a new experience, with new terminology and extremes of emotion. Each week had its own personality. One week we would be excited with how well he was doing and the next, we would receive a bombshell of information that would leave us depressed for days.

The first thing we learned was that his lungs were not healthy. He had pulmonary interstitial emphysema, which ironically was caused by the ventilator that was keeping him alive by helping him breathe. Mechanical pressure caused the alveolar ducts to rupture allowing air to escape into the interstitial tissue. This catch 22 of ventilator support versus lung damage was a constant battle for three months, with a vicious cycle of increasing support, which caused small damage, which created the need for more support. We later learned he had another condition known as patent ductus arteriosus (PDA). This aided in his chronic lung disease by shunting blood away from the lungs via a ductus connecting his pulmonary artery and aorta. This is common in all infants, but normally resolves directly following birth. From the PIE and PDA, he developed pulmonary hypertension. His developing chronic lung disease lead to pneumonia, twice. Pneumonia usually came in conjunction with urinary tract infections, of which he had three, and sepsis (once). Then, as he grew and is retinas began to form, he developed retinopathy- when the blood vessels in the eye begin forming out of the plane of the eyeball. If left untreated retinopathy will cause the retina to detach from the eye leading to blindness. The irony of the situation is that gastroschisis, which seemed to be the end of the world, so far has caused no complications and was fixed within a week of birth.

Many different medications and treatments were offered for each new issue that arose, many that involved serious risks. Kai was on diuretics for the duration of his time in the hospital to keep water off his lungs. He was given many different steroids for his heart and lungs, many different antibiotics, pain killers, and even experimental drugs. Writing this blog so retrospectively, I can't remember each individual drug he was given, but there were lots. In addition to all the drugs, he had heart surgery, bowl surgery, injections in his eyeballs, and about thirty x-rays. I worried that he would hate being touched when he came home because the only touch he new was unpleasant and sometimes painful.

I should have done this sooner...

The inspiration behind creating this blog is courtesy of my three month old son, who was born three months too soon. This would have been a great idea to start three months ago, as a sort of record of the events and emotions that were experienced along this "magical" ride. But alas, I am not internet savvy, and as such, I am three months late. Better late than never.

I'll start from the beginning, because... where else would one start? At the beginning of May 2009, I was terminated from my job for reasons that still don't make sense. It also happened to be three days before my vacation to Indonesia with my husband, James, and our friend, Will. During this vacation, the little bundle was conceived (made in Indonesia!). Slightly on purpose. I arrived home two weeks later (two weeks before James), only to be jobless and to find my grandmother, whose love and respect I valued so highly, in the hospital. Sadly, she died before James could come home. On the morning of her funeral I took a pregnancy test at my sister's house- which was initiated because my uncut, male doberman was literally drooling over the scent of my boobs- it was positive. Ohh, what bittersweet news... I miss my grandma...

Skipping ahead, I did everything within my power to be a health conscious mother. I ate healthy, started eating meat, yoga (sometimes). I even avoided caffeine, dammit! But apparently nothing stops a ready baby.

James and I went for one of our regular check-ups at the birthing center in gainesville and decide to have the pentascreen done. About a week later we were informed that the results were not good. Although we were worried it was spinabifida, we later found out it was a lesser evil. On October 16 2009 we went for an ultrasound to detect if there was a reason for the elevated pentascreen. Yes, there was. After learning we were having a boy, we learned he had a condition known as gastroscesis- when the intestines of the fetus inside the womb protrude out of the stomach through a whole in the belly. Needless to say, we were destroyed that day. We read up on the condition and terrified ourselves all day. Looking back, it seems like a minor detail, but to an expecting family, it is the worst possible thing you can experience. I have never felt anything worse than thinking my child may be deficient and have a poor quality of life. I think at that point, miscarrying would have been easier.

I had been feeling a slight discomfort the next day, which I assumed was either due to stress or gas. On October 18, while at work, I went to the bathroom and there was blood... it wasn't stress or gas, it was contractions, I was in labor. I ran out of work, grabbed my poor husband, and sped to labor and delivery. Terrified and in shock, they informed us that I was in labor and five centimeters dilated. Holy Shit! They pumped me full of drugs-which I tried so hard to avoid mind you-to keep me pregnant and hold my contractions a bay. The futility of it all.

While laid up in the hospital we had plenty of time to ponder on the outcome of the situation. There were lots of doctors, nurses, and specialists who spoke with us every day about the possibilities that lay before us. Most were not so pleasant to think about. Each day was torture, not just physically, but thinking about our poor son, if he would survive, and what kind of life he would get to experience. Initially, we had made the decision to not resuscitate him and just let nature take its course. Thank god we changed our minds. Every decision we had to make was so hard. There was no right answer, it all depended on..."fate."
After ten days of agonizing labor, gross blood clots, constipation, the awful thought that my baby may die or be horribly deficient, trandelemberg- which for those of you who don't know, means being upside down in a bed- poor James wiping my ass and tending to me dutifully, disgusting hospital food, and well, you get the picture, he was born.

On October 27, 2009 Kai Lani Boyles was born. It took about three back-to-back contractions and two pushes. He came out in the sack, turned from a breached position to head on, and was breathing on his own. He weighed 1 lbs 7 oz and was the smallest beautiful thing I have ever seen. Although, I must mention the worst pain I have ever experienced in my entire life... what I would imagine it would feel like to be a live chicken having its thighs pulled apart and ripped from its body, and I was only six months pregnant... can't wait for number two! He truly was amazing though, little did we know that it was only the beginning of a long and arduous road.