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.