Skimming breastmilk for Chylothorax

There she was, my sweet innocent baby girl, lying in the hospital crib. E was still not healing as well from her heart surgery a couple of days earlier the way we had hoped. Her first open heart surgery took around 7 hours when she was barely 3 days old. We were prepared as we could have been for that. Here we were in the CVICU, (CardioVascular Intensive Care Unit) at Lucille Packard's Children's Hospital in Palo Alto, California. I had been there with my mother and daughter at the local Ronald McDonald House for over a month nervously awaiting the day I could hold E. Doctors had begun running tests to see why the drainage from her 2 chest tubes was not slowing down. We had just started to introduce breastmilk to her. I had been pumping for nearly a week, storing and freezing as I could.

Then comes the doctors, they are concerned. The test results were in. E needed another chest tube for a condition called Chylothorax. Her father and I were told that her body could not process the fats in her breastmilk and where dumping it into her pleural cavity which was could close her lungs up. She needed to immediately be put on IV nutrition and then be introduced to a special formula. It was $11 per small can. We were concerned because of all the benefits from breastmilk that she would not be given. We discussed with the doctor's if there was a way. The doctor's and L, my husband, an engineer worked on an idea that if we could find a way to remove the fat from the breast milk, then we could do a trial to see if she could tolerate it. LCPH, Lucille Packard Children's Hospital is a very breastfeeding friendly hospital.

We knew they cared about getting E the best she could get. Nationwide across USA, hospitals use their films on breastfeeding to educate mothers and families. They had rooms for pumping also. We knew we were one of the best places to try. They even worked with us. My husband researched and bought a centrifuge. It was sent to our room at the Ronald McDonald House. We told them also what we were doing. My husband calculated with precision how much time and speed it would take to separate the fat from the milk. We knew it would float to the top. Nurses from LPCH provided us with feeding syringes and feeding tubes. We found a store outside of San Francisco to buy tubes and corks.

The first trial failed. The corks on the test tubes were too big and broke some of them. We cleaned the machine and put food grade plastic wrap over the top of the tubes and started again. After 30 or so minutes, we could see the separation of the fat with liquid in the middle and some sediment on the bottom. We finally decided the best method was to cut off the tip of the feeding tube and attach the other end to the feeding syringe. While I aimed the tube close to bottom, pulled on the syringe drawing the non-fat liquid into it. It took about another 30 minutes. Two hours later I would wake to pump again then I woke L up and we began the process again for weeks eventually distancing the pumping times. Would it work was our fear? A nutritionist helped us formulate how much formula to mix with breastmilk. It worked. After a month and half of other issues, we were able to return to our home in Arizona.

For the next 3 months, we continued skimming her milk. We began trial feeding her. To my surprise, she was easier to breastfeed then my firstborn. She latched on perfectly without hesitation. I was shocked. I had always kept her close to me when she bottlefed. We shortly returned to the doctor and determined that her chylothorax was officially over and she was as normal in that area as she could be. To continue any medications we used curve syringes to sneak medicine in as she breastfed. It was by no means easy. We honestly feel that the recovery she made has strengthened her and healed her compared just giving straight formula. It can be done. My hope is that if you are reading this, that you keep moving one step forward at a time. Deep breath as much as you can remind yourself. You are stronger and more useful than you know.
Best wishes.

Christina B.

Cheap but therapeutic toys

About a month ago my older daughter of two kept on going after some colored poms that I was intending to use as a project. Out of desperation to keep her from annoying me while I was tending to my 3 month infant, I decided to let her have a few of the large poms to play with. My younger daughter was and is still in physical therapy where we have been working on her indwelling thumbs. She seemed to be very interested in these cheap poms that were actually soft so I gave her one to her to her delight. she actually improved her grasp while playing with these. Another idea I had was to use a craft bag of miscellaneous pipe cleaners too for the different textures. I'm working on other ideas ... I learned from my daughter's stay in the hospital that you don't always need big fancy toys. I made her a mobile out of construction paper that she loved to watch also. I'm planning on make her another mobile using the pipe cleaner and other textured things that she will be allowed to grab on and tug. My hope through this blog is to help with productive ideas for other parents. Best wishes to you who read this.

Next blog goal is to make a brace and show you how I do it to encourage her thumbs to open because there doesn't seem to be ones her size.