Finding the "Food Freak" Balance, Part II

Parker was born after 43 hours of pain med free labor that culminated in a C-section complete with spinal block.  I tried.  The important thing is that Parker handled all those contractions and all the drama and insanity like a champion.  I would like to think that my eating habits the last few months of pregnancy contributed to his ability to cope.  Charles and I were warned that heart babies tend to sleep a lot, tire easily, be smaller than average, and sometimes don't feed or thrive as well as heart-healthy babies.  As soon as Parker made his grand entrance, I was allowed to kiss his face and then he was whisked away to the NICU while I was closed up and wheeled to recovery.  Charles was able to go to the NICU to be with Parker while they determined if he would need surgery that day or not.

I was put into a private room and shortly thereafter Parker was brought in to me.  He was not "ductal dependent" and would be able to stay with me as long as he didn't exhibit any signs of a "Tet spell" before his first open-heart surgery, which, God willing, would not have to happen until somewhere around six months of age.  Parker's measurements had been tallied and he was in the 50-75th percentile for weight at 8 pounds 1 ounce, 25-50th percentile for length at 20.5 inches long, and 90th percentile for head circumference (hence the 43 hours of futile labor).  So far he had surpassed expectations.  The nurses in the NICU had given Parker a bottle of formula while he was in their care, presumably to calm him and keep him quiet--a Tetralogy of Fallot baby can go into cardiac arrest if allowed to cry--so he wasn't hungry when he first came into my arms.  Up until the point at which I first held him I was undecided about the whole breast feeding "thing".  I wasn't sure I would be able to do it.  As soon as I held him I knew I was going to give it everything I had.  I must say, it is SHOCKING how poor the choices in food are for a new mother at the hospital where Parker was born.  I almost couldn't eat anything from within the hospital because it wasn't healthy enough for my standards.  My milk didn't come in the entire time at the hospital and Parker started dropping weight.  They started talking about supplementation and I started squalling about wanting to go home.  Thankfully, all else went well (even though Charles and I both contracted the flu in the hospital--go figure), my milk came in when we got home, and Parker continued to amaze the pediatrician, the cardiologist, and his mom and dad every single day.

Having a baby that is not allowed to cry presents some pretty interesting challenges.  There is no option to let them "cry it out" for a few minutes and see if they can self-soothe.  Having a Tetralogy of Fallot baby means that you must mentally steel yourself for six months of sleep deprivation.  I firmly believe that my dietary choices made this a little easier, too.  Even though it was insanely difficult to motivate myself to cook everyday and to shop two or three times a week for fresh, organic produce, I knew in my heart that feeding my body these good meals was in turn providing my baby with the best chance possible of clearing the obstacles he would encounter in the months to come.  Some of it, I'm sure, was pure adrenaline, but I was able to fight fatigue with a daily dose of spinach and black beans.  Our grocery bills had grown larger, but we never ate out anymore so the jump was justifiable.  We, as a family, had a tremendous amount of stuff to deal with over the next year.  Parker had two surgeries, Charles changed jobs, and we moved.  It made me sweat just to type all that in the same sentence.

Parker had open-heart surgery when he was five months old.  The cardiologist, the cardio-thoracic surgeon, the pediatrician, and all the nurses at Children's Healthcare of Atlanta were amazed that my son, a cardiac kid, weighed 18 pounds when he went in for surgery.  I suppose this was unheard of for a cardiac kid.  Well, I remember watching Popeye cartoons as a kid and I remember how beneficial spinach was to Popeye's strength.  I also know that I noticed a difference in the color of my breast milk when I pumped after eating spinach and other greens versus the times I didn't.  When Parker went in for his surgery, I had not eaten any meat or dairy for nearly a year.  I tried to eat only whole, organic foods.  Now, I understand that I was using nursing to soothe him and keep him from crying, but I firmly believe that what I ate played a role in the health of my son leading up to his surgery.  I was not putting fast-food, GMO, processed garbage in my body to be further processed and passed on to my infant.  I think I may remember ONE time before Parker's surgery that he spit up.  ONE TIME.  In five months.  No reflux.  No spit-up.  No fussiness at feeding time.  I couldn't even make the kid burp.  The only feeding issue we had those first five months was that he wanted to nurse what seemed to be more frequently than other infants, and I couldn't refuse him because he couldn't be allowed to cry.  Everything that happened in CICU is a blog for another day and another subject.  Suffice it to say that Parker handled the anesthesia and the surgery itself like a champ.  There were other babies that didn't fare so well.

This is how Parker looked two days after surgery.  We learned at this point why it was so important that we have as much weight on him as possible before surgery:  Parker had chylothorax.  Chylothorax is not an uncommon condition for an individual to have immediately following open heart surgery.  According to Wikipedia, "Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. The most common causes are lymphoma and trauma caused by thoracic surgery. If the patient is on a normal diet, the effusion can be identified by its white and milky appearance, as it contains high levels of triglycerides. This chyle composition of triglycerides is mostly in the form of chylomicrons." and, "Since the mechanism behind chylothorax is not well understood, treatment options are limited. Drainage of the fluid out of the pleural space is essential to obviate damage to organs, especially the inhibition of lung function by the counter pressure of the chyle. Another treatment option is pneumoperitoneal shunting (creating a communication channel between pleural space and peritoneal cavity). By this surgical technique loss of essential triglycerides that escape the thoracic duct can be prevented. Omitting fat (in particular FFA) from the diet is essential."  Parker already had a chest tube in place, so the pleural effusion was not as big an issue as the fat.  We had to eliminate ALL fat from his diet for six weeks in order to allow his lymphatic vessels to heal.  Interestingly enough, when they tested the chyle from Parker's drainage tube, the doctors were amazed at how low--nearly nonexistent--the triglyceride count was.  After a day or so of Parker vomiting because he wasn't tolerating the fat-free, cow-based formula prescribed to him, the doctors actually allowed me to try nursing again because the triglyceride count of my breast milk was so low.  Unfortunately, there was still too much fat, so we entered a six week long cycle of feeding and vomiting.  While we were still in the hospital, the doctors decided to introduce baby food to Parker to give him some calories and vitamins that he wouldn't end up wearing a half hour AFTER eating.  Gerber baby food peas were on the menu for Parker's first food experience.  Parker's eyes got so wide and he was nearly giddy eating that green mess.  He developed a horrible diaper rash, I'm not sure if it was from the maybe-too-soon introduction of vegetables or the formula, but at least we were cleared to feed vegetable baby food.  I remember feeling so helpless those six weeks, not being able to do for my son the one thing I had done such a stellar job of until that point.  The one good thing that came of that experience: my breast milk was one of the first to be studied at the hospital to determine the plausibility of skimming breast milk.  While we didn't benefit from the research, babies that suffer from chylothorax after open heart surgery can now be fed breast milk instead of a cow based, adult-oriented, ridiculous excuse for nutrition.

Parker came off the formula and resumed his normal eating habits, with the addition of organic baby food vegetables and fruit, and soon after that steamed vegetables and fruits that still had their original shape and beans and grains.  I know of parents of cardiac kids that have such horror stories regarding feeding their babies.  They can't keep weight on them, pre- and post-surgery, they have picky eaters, and they have to use all sorts of supplementation to keep the weight on and the calories going in.  I know everybody is different, and every cardiac baby is different, but I know in my heart that Parker's success in nursing and weight gain and stamina and recovery and willingness to eat all sorts of food from the get-go was due in large part to the good dietary choices I made for him, starting from before he was born.  The next picture was taken not long after he came off of the horrible formula.

I also believe that Charles and I were more able to cope with all the stress brought into our lives because our immune systems were better supported by good nutrition.  Even after all the sleepless nights and all the stress, Charles and I only got sick while sleeping in the hospital.  We both got the flu when Parker was born, and I got sick when Parker was in the hospital with pneumonia after his first birthday.  Same type of thing, flu-like symptoms with lots of mucous everywhere.  I'm just allergic to hospitals.  After two hospital stays in the spring of 2009 due to pneumonia, Parker was doing great.  I began to relish taking him to the grocery store over the next few months as I didn't have to worry about who might breathe on him (can't have a cardiac baby getting sick--they already have low oxygen saturation levels in their blood and any type of infection would just make it lower) and I could just talk to him about all the different colors and textures of the food.  Charles changed jobs and we moved to the other side of the city, which put us much closer to Charles's parents.  I was back to work a few days a week, back to my pre-pregnancy weight and starting to run again here and there.  Life was pretty good.  Life was pretty healthy, or so I thought.

This last picture was taken in December of 2009.  It wouldn't be much longer before my life would be turned upside-down, and forever changed...again.