Benson, Tetralogy of Fallot (Part 5) Chylothorax

Aaron and I decided that we would split the time during the day with Benson. One of us would get there early in the morning, the next would go after dinner, and stay until about 10:00 or so. Since he was still so little, and we needed rest, we left him at night in the capable hands of the nurses and slept at Aaron’s dad’s house. The next day we would switch, until I was able to resume nursing. Aaron started the first shift at night since I spent all day at the hospital with Benson during his surgery.

About half way through Aaron’s shift the first or second day after the surgery, and after they had started to feed him some of my expressed breastmilk, he called with some disturbing news. There was a complication in surgery. The drainage tubes in his chest were draining chylo– basically fat and cholesterol. Benson’s lymphatic system was damaged, and was unable to process the fat from my pumped breast milk, and it was leaking into his chest cavity. This condition is somewhat rare, and is called Chylothorax. Untreated, Benson would slowly be asphyxiated as the chylo built up around his lungs and crushed them. The nourishment that was the absolute best for him was suddenly deadly and he was put on a fat free diet. He was not allowed to nurse for 6 weeks, and the chest tubes were to stay in until he was no longer draining chylo.

I was devastated. And angry. FURIOUS. I worked SO hard to get him to nurse the first time, and I HATE pumping! And I wanted him to get the best nourishment possible and was being told that my milk as it was would kill him. I was ready to throw in the towel, right then and there! I continued pumping anyway, hoping for some sort of solution, and within a day or so, Benson was moved up a floor to the CSU. And I vented on Facebook.

PCMC has a great Lactation department. And they have state-of-the-art equipment. So they offered to “spin” my milk in a special centrifuge and remove all of the fat. He still needed the calories, so the fat-free breastmilk was then supplemented with formula. We started off with a fat-free formula called Enfaport. And the screaming began. Benson was usually a very calm baby, but nothing we did could soothe him. For days this continued. It was difficult to get him to sleep, and to stay asleep. Despite simethicon (sp? a generic Mylicon), and all of the other pain meds he was on, we could tell he was just plain uncomfortable, and would SCREAM every time we tried to feed him. And his diapers were GROSS. We were all just stumped. So, I felt prompted to ask if there were other formula options for Benson. They did some hunting and discussing with the nutritionist, and came up with Vivonex T.E.N., an adult liquid diet formula powder. It had the correct calorie count that he needed, so we gave it a try. Instant relief! Benson was soon a much happier baby. Hooray for switching formulas!

Aside from the oxygen, and an IV, a tubeless Benson. Still very swollen from surgery.

With that, Benson continued to rest up, the chest tubes were removed one by one, and Aaron and I continued to take turns staying with him. I continued to pump and to freeze. They didn’t need nearly as much milk as I was pumping since they were spinning and supplementing. They were using breastmilk and formula at a 50/50 ratio. I had them spin my milk, and then we froze it and used it as needed. My biggest worry was when we got home. If I was going to continue pumping, I wanted and needed to know that he could drink it somehow. The thought of pumping and storing and never being able to use it, and to put him on formula, depressed me and I felt very discouraged. My feelings were that if I couldn’t use my milk to feed my son, then I was done. I hated pumping enough to just give up once we were out of the hospital, unless we could find another option. There was no hospital nearby in Montana that had the ability to spin my milk. And I vented on Facebook again.

Once Benson was on a formula that was not distressing him, he bounced back very quickly. Apparently the typical stay at the hospital after heart surgery is 7-11 days, give or take. We were out in 8 days. Benson recovered well, and aside from the awful, horrible chylothorax (easily treatable, thankfully), he had no other complications. He had daily x-rays to make sure the chylo was clearing up (and it was), and when the day to be released came, it was bliss!!! We stuck around in SLC for another week just to make sure things were healing as they should.

Once Benson was out of the hospital, Aaron took the opportunity to go and work a little at the SLC airport. And I took on the 4 kids myself. We found some activities to do, some as an entire family, some with me and the boys, and some with my friend and mission companion Anna (Townsley) Clegg.We did Temple Square, visited the Air Force Museum, went to the park and had a picnic as a family, went to a farm and pet the animals… we tried to have some fun together!

To cut things short and save the technicalities for another post, I will just say this: between my friends on Facebook, the amazing Head Lactation Consultant, Ellen, my husband, and a generous sister in my branch, we were able to find a to spin my milk at home, using, of all things, our washing machine. And we were able to cut down the time he needed to be fat-free to 4 weeks instead of 6 (thanks to the persuasions of Ellen with the NP’s… because she knew I was not willing/emotionally capable of trying to pump those extra two weeks and take care of my other 3 kids and the house!). I also was able to build up quite the stockade of fat-free milk to take home with me and tide me over as long as possible. We ended up only needing to spin 3 days worth of milk, and we were done! And on May 12th, Benson was allowed to nurse again. Well, to try to nurse again, anyway! And he only had one hiccup and transitioned nicely back to nursing instead of the bottle. It was a marvelous day! With that, Benson was finally a “normal” baby.