Home, Home at Last!

My baby is home! He has been for a little over a week now. Things have been going well, better than I expected. The first day was a terrifying one, though. He was so exhausted and wasn't eating well, I had just gotten sick and was wearing a mask for two days so as not to infect him. I was worried I had gotten him sick. Everything turned out ok. He was just exhausted from all the changes and new sensations of being home.

Having a baby is the most draining experience I have ever had. I haven't had a good night sleep since he has been home, and I can't even nap because he never does. He wants to be awake all the time and I testing me constantly. I expected him to be more infantile when he first came home, but he is more grown than I thought. He is a big string boy. He is already standing and pulling himself up with my help. He can hold his head on his own and hold himself up while on his tummy. He's smart, too. He has gotten good control over his hands and can hold his pacifier all by himself. He is very attention demanding and I am trying to teach him that sometimes mommy can't hold him. I hope he learns, otherwise I am going to be very tired.

We have so many doctors appointments, which is very difficult to manage with his monitor and oxygen. Oh yeah, I forgot to mention that he is still on a monitor and needed oxygen support from home. So far so good, but it's a pain in the ass. There are so many instructions and phone numbers and things to remember. I'm really beginning to rethink baby number two. We'll see. This is much harder than I expected.

...The beast has awoken from his slumber... until next time...

Slow Progress

We had a scare about two weeks ago. Kai was acting sickly, so we had the nurse practitioner do some tests on him. She was informing James and I that RSV, a virus that is potentially deadly to premature infants, has been going around in the community. In adults and children, is shows as a mild cold, but for preemies, infants with chronic lung disease, and infants with heart disease (all of which Kai has) it can be devastating. Needless to say, James and I were upset by such news. We went home that night in disbelief that shit like this could still happen after he was doing so well, after talk of him returning home.

They started him on antibiotics immediately and awaited the test results. His CRP test came back showing that he had an inflammation somewhere, we had to find out where. After about 48 hours we got the news that none of the cultures had grown, which was a good sign. Then, after about 96 hours, nothing had grown. We still don't know what was wrong with him, but he got better within about two days of feeling sick and continued to trek along.

I have been staying at the hospital a lot, trying desperately to get him home soon. It seems all my hard work paid off. Kai is scheduled to come home on Friday, assuming there are no changes to his condition. I met with his nurse yesterday to discuss his meal plan. Preemies have a hard time gaining adequate weight, especially when complicated by chronic lung disease. This is due to the amount of energy that is required for him to breathe vs a term baby. According to his meal plan, he has to take four bottles a day, not something an aspiring breast feeding mom wants to hear, but he need a fortifier that will help him gain weight. In addition, he will be needed a fat supplement, such as coconut oil or palm oil. Both are high in saturated fats, which are easy to digest and lauric acid, which is present in high concentrations in breast milk. The nurse was explaining that most mothers of such an early preemie don't make it to discharge able to breast feed their babies, and being that this was a rare case, she had to do a lot of research. Luckily. I am also taking a random nutrition class and I plan to ask my professor about supplementation suggestions. I would much rather give Kai an animal based oil, but coconut will suffice for now.

Yesterday, I also went crib shopping with my mother. Walmart gave us the run around and we ended up visiting all three stores in Gainesville unintentionally. But it worked out for the better because at store number three, I found a great deal. So, aside from a mattress, He is all ready to come home! Friday can't come soon enough...

And then there was light...

On December 25, 2009, nearly two months after he was born, I got to hold my son for the first time. Merry Christmas to me! It was a magical milestone. We were beginning to see that we may get to raise our son after all. He did very well that day, and for every holding to follow. We had to start with Kangaroo holding, and weren't able to hold him like a baby for another week or two.

On January 18th they finally extubated him. He looked so different! James and I walked into his room that morning, knowing that they removed his tube, and yet we still walked in and walked back out thinking he wasn't our baby. He went from a reddish pink color, to looking like a white baby. After a few days though, his ethnicity was restored. About a week later I got to breast feed him for the first time. He did really well with that, too. He went straight for it, just like a big boy. We are currently working on the feeding thing today. There is still some room for improvement.

Another week later, he was moved from the NICU3 to the NICU2. I can't believe he has made it so far... we never expected this, and with such encouraging results.

That brings us about up to speed. There were, of course, some details that got left out, but I think the general experience has been laid out before you. He is doing really well now. He is breast feeding and bottle feeding almost every feed and is breathing very well with minimal support. His pulmonary hypertension is resolving and the experimental treatment for his eyes seems to have worked. The only thing keeping him in the hospital is feeding. He needs to be able to eat 100% via bottle or breast.
Last night I slept at the hospital so that I could breast feed him all night, however, I never woke up. So, this morning I felt really bad when I arrived at his bedside and had failed to come and work with him. I will have to sleep here again, and try again. On the plus side, the opthamologist checked on his ROP today and said that his eyes looked great! I am loving all the good news. Its about damn time.

They are thinking he will have to go home with a monitor and on oxygen, but they are talking about him coming home. We have been waiting for this for so long, and now its tangible.

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.