Feeding challenges

So, one of the difficulties Oakley's disease causes is malabsorption-his digestive system just doesn't pull all the nutrients, calories, or water from his food as it goes through his body. He was on TPN (which is IV nutrition, it stands for "Total Parental Nutrition") for the first few days of



First feed!



his life, and didn't get to nurse from me at all-I hadn't even been allowed to hold him yet. The doctors finally gave the go ahead for him to try to eat on April 22nd, and his nurse, Miranda, called our room on the NICU floor excitedly to let us know we could now not only hold him, but try to give him a bottle of my expressed colostrum (the pre-milk that comes in for a few days before the



first time he got to eat, I was so happy to hold him!



 real stuff comes in. it's super nutrient packed and helps the body pass the meconium-black tarry crap-in the baby's system)! Trevor and I were so excited, we took the fastest showers we'd ever taken and threw on clothes to go down to his room and hold our son for the first time. He had been sucking on a pacifier for a couple of days, so he had the mechanics pretty figured out. I sat in the rocking chair in his room as Miranda had me put a pillow on my lap and then brought his teeny tiny body to my arms. The bottle was almost bigger than he was, but he was so excited to eat for the first time. He sucked that bottle loudly down, and Trevor and I laughed. "He really is our kid, see, he wants to be a fat kid so bad, he's a fat kid at heart!" He didn't have the big, chubby cheeks that babies are born with that helps squish their tongues into a taco to eat properly, so when he ate, he slurped and it sucked his cheeks in like a fish face.



The bottle is almost as big as his head!



I was finally able to do something for my son, he was getting the fruits of my long hours of pumping, and I finally felt a little bit of self-worth as a mother. From there on, producing as much milk as possible was my mantra. I drank Mother's Milk tea to improve my supply, and I started pumping every 2 hours or so to make my body a living, breathing, one-woman dairy. I quickly became a super producer and had several bins in the freezer of the NICU overflowing with baggies of my milk and I was able to attempt breastfeeding...but only twice. Those attempts did not go well, at all. The first time, I was  ready, surrounded by pillows, topless and very full of milk. Oakley was very hungry and irritated about the IV that had just been placed and had delayed his feed. They handed him to me while he was crying and hungry, and my body started to let down. I soaked him, the pillows, and myself thoroughly, but he was unable to latch on due to his lack of suction, because he didn't have the buccal pads (chubby cheeks) that help curl his tongue. The nurse was trying to help, but because I was so full, she thought I was engorged and that there was no way we could squish my boob into his mouth. Oakley was crying, I was crying, and everything was soaked in breastmilk. It was a traumatic experience. The next feed, I pumped beforehand so my supply wouldn't be literally overflowing. He still wouldn't latch, and lactation came in to help. We used a nipple shield to help aid, and that helped, but he was upset yet again right before the feed, because he had just had to have blood drawn for another test,



Dad, holding Oakley for the first time.



 and had been given a subcutaneous insulin shot. I was dismayed, because it seemed like right before all of his feeds, there would be something bad or painful that would happen, and I didn't want him to associate contact with my skin to pain or trauma. The doctors also decided that breastfeeding was no longer going to be an option, because they still had been unable to get his bloodsugars in check, and they wanted to be sure of how much Oakley was getting, and his stool was just as prevalent as my milk supply.  Oakley had such violent diarrhea that the GI specialists thought he wasn't able to digest my milk. They thought his body was incapable of breaking it down into a simple enough form to use in his body, so his body was "dumping." Dumping is when your body not only doesn't absorb nutrients from what you're consuming, but also is releasing it's own stores trying to to digest it. So basically, he was putting out more than we were putting in. He didn't have any excess to start with, so it was very vital that we not let him further his emaciation.

They put him on an elemental formula to see if it could help him and give him nutrients. This devastated me. The little amount of help I was able to provide my child was gone. It was hurting him worse than it was helping. Now, when I got up in the night to pump, it would put me into a deeper and deeper depression. Not only was I unable to help my kid, I was hurting him. I was not able to provide anything for my son that wasn't already being provided by trained nursing staff. He didn't need me. I was useless. Everytime I pumped, it reminded me that not only did I not have my son with me at home, but he wasn't even eating what I pumped. it seemed pointless, but I had already defined myself as this milkmaid...the lactation staff in the NICU is awesome. They deal with the entire spectrum of moms in the NICU. They have women who don't produce enough, or any, milk and then when they try to build a supply, they're too stressed because of having no milk, a cyclical stress-no/low milk supply-stress ordeal. They help mothers who are going to lose their baby, and provide them with a coping mechanism of being able to express their milk to donate for other babies in their lost child's name. They deal with everything from inverted nipples to rock-hard engorged boobs and help them to bond with their babies in a way that noone else can.



I'm smiling behind the mask, this was the first time I got to hold my son



They advocate for moms who want to breastfeed, and they were my battalion when I needed them. Oakley's diarrhea and dumping didn't get better on the elemental formula. He went from being a kid who would eat as if he didn't know if he would ever be able to eat again to not eating at all one day. He would cry when you put the bottle in his mouth. We tried different nipples, holding him different ways, we were at a loss. So the doctors had a feeding tube put in, and he was fed that way. So now, not only was he not getting my milk, but he had lost the joy of eating. They would try and get him to eat the bottle, and he would choke and sputter and act like he was drowning, then they'd put the remainder down his tube. He rebounded and started doing well with his bottle feeds, but we delayed removing the feeding tube because we had drawn a mustache on the tape strip that held it to his face, and it was too funny to remove.

The diarrhea was still so frequent though, that the doctors decided to hold his feeds for a few days to give his gut the chance to regrow or regenerate, so that he might be able to better absorb. Oakley was not happy about that. He was 4 lbs 8.3 oz of pure fury. His tummy was growling and he just wanted to eat, even though he was getting lots of nutrients through his IV. They decided to let him satiate the oral need after 3 days of NPO (no products orally) with 15 ml of pedialyte for his feeds. They wanted to  slowly introduce food so he wouldn't shock his system and stress his gut. The next day they allowed 5ml of milk to be added. They wanted to do 5 ml of the elemental formula, but I was adamant that they use my breast milk-it would give him my immunities and help build his-and with the help of my battalion of lactation consultants backing me up, we won that battle.