Our one week stay in the hospital turned into 4 weeks. The complication was chylothorax. It is something complicated that the doctors admit they don't totally understand, but basically here is what I got out of asking them about 200 times:
Fluid collects in the pleural space (the space between the lining of the lungs and the chest cavity) and restricts the space the lungs have to expand.
The lymphatic system is responsible for processing fats. (Who knew?) Our daughter was put on IV nutrition (TPN and lipids) and then had a food challenge. They used full fat breast milk for this and it was after a short time. The fat poured into her pleural space and she had to get an extra chest tube to drain it. It also caused respiratory distress. It was terrible.
Then she was put back on TPN and lipids. This time it was for a lot longer.
In the meantime I was working with lactation and nutrition to figure out what to transition her onto after the TPN and lipid phase was over.
Typically they put kids on Portagin (spelled something like that) because it is a really low fat formula. Megan is milk and soy intolerant and Portagin is milk based, so it wasn't an option. There was another formula but they weren't big fans of it (not nutritionally complete) so we started trying to make low fat breast milk.
First I changed my diet. The lymphatic system is not responsible for processing medium chain fatty acids. Breast milk is always going to be about the same percentage fat and you can't really change that, but you can change the type of fat. I avoided all meat fat and drank coconut milk. I also tried to have most of my calories come from carbohydrates.
When I pumped I would stop after the first 1/3 of my pumping time had elapsed and set the milk aside. The rest of the milk I dumped. That foremilk was stored in a hard plastic container for at least 4 hours and then I would take a 60 cc syringe and suction out the milk below the fat layer. (I got really good at making a small air bubble to use to get the fat off the tip before sucking the milk in. Also, my milk first thing in the morning I would use the first 2/3 because it was all low fat.)
The dietitian and lactation consultants were using a hematocrit machine and spinning samples of my milk to determine the fat content. We got to the point that it was lower fat than the formula.
When she was ready to start taking her food orally we started her with this milk.
The problem was that they wanted her on this low fat diet for 6 weeks. I was dumping more than half of what I was pumping. It doesn't take any advanced math to see that there was no way I could supply what she needed if I dumped this much, so we had to find a way to make low fat milk out of all of my milk and not just the foremilk.
There is a la leche league article about this and the family use the washing machine as a centrifuge but couldn't figure out how to get the milk out once it was seperated. They ended up buying a real centrifuge to separate the milk and fat and feed their baby. After finding out that a centerfuge was going to be expensive and very tedious, I decided a better approach was to use the washing mahine and think of a way to get the milk out.
Washing machine milk centrifuge:
I took 60 cc syringes of freshly pumped milk (no need to let it sit for this, but if you do just fill the syringe with the part under the fat layer and consider it a double-skimming) and closed them with IV locking caps. (They screw on. The kind that pushes on leaked and I lost a batch of milk into the washing machine that way.) The hosptial supplied me with these.
Then I tied a cord around the syringe up by the flange (the cord I used was similar to shoelace material, the yarn broke), hung the syringe pointing down, and tied the other end of the string to the agitator in my washing machine. I ran the spin cycle (the syringe would fly outwards like the swing ride at the fair, but I tied it tight so it wasn't hitting the sides). When the cycle finished the fat would be at the top of the syringe. I took the cap off and squirted the milk out into a storage container and stopped squirting when I reached the fat layer. Tadaaa! Low fat milk! I found that I could spin 2 syringes at once with no tangling or problems. I was never brave enough to put 180 ccs of milk in at once. The creamatocrit results showed that we could make 1% milkfat and even less using this technique.
For the contact information of the nutritionist and lactation consultants at Nationwide Children's Hospital who did this with me, email me. They have more information that will be useful should you be going down the same path.