Cecilia Days: 2013

Hey Hey Hey!

Right now: Cecilia is out like a light and cozy again in bed (so is Mark!). She had a most excellent day today and I could barely peel myself away she was so cute! Today was just a chill out day to eat and hang really- the doctors came by and visited and- yeah- so did Darth Vader! This was way more rad for me than for her, but I know there will come a day when she thanks me :).

Dr. Hoyer, her cardiologist, said she looked great and that was great to hear- I think she's probably looked great this whole time but I'm new to this whole open-heart surgery business! I listen to the doc and the rest of her caregivers- aaaaand do a little bit of research myself to tie it all together.

mmmmmmm? tylenol!

Meds: We are still giving her tylenol for any discomfort and she's getting pepcid for tummy troubles and her good ole lasix for her diuretic.

What next? Well- I'm gonna say this with 95% confidence- we are going home tomorrow! Cecilia still has some housekeeping items on the list for tomorrow- such as: get her drain tubes removed aaand... well- yeah- that's about it. So that won't be fun, but she's going to have some nice baby pain medicine to make it all dreamy! Then we will maybe go home in the afternoon- we shall see.

Okay, here's the long version:

Mark mentioned we had some ups and downs over the weekend and he wasn't kidding! It was nothing too serious, but they were setbacks nevertheless. Things were outstanding on Thursday? and then the wrench got thrown in. In a nutshell: Discomfort/pain, chylothorax, discomfort, oxycodone, diet change to formula, painful explosive gas/diarrhea, chylo cleared, blood in diarrhea, diet change back to breast milk, diarrhea chilled out, blood is almost resolved, no more painful bowel movements, chylothorax has not recurred (yet) and smiles smiles smiles!

The fluid that they were getting off of Cecilia's drains were becoming more and more cloudy due to lymphatic fluid leaking into the pleural (and later the pericardial) space- which is called a chylothorax. So now this fatty fluid was going where it should not go- posing a threat to Cecilia's ability to breath comfortably as well as pump her blood comfortably. Blah! The good news was that the amount of fluid they were pulling off was pretty small- only 1 or so cc's every 6 hours. It's not the fat that's the problem, it's the amount of fluid, but an extra source of fluid is problematic. The lymphatic system is huge and the network runs throughout our bodies- apparently in these little ones, the vessels can be single cell tubes with just one layer to their walls. Going into her heart and such either damaged some of these vessels or changed the pressure gradient, which caused the lymph to seep into places it need not seep.

The go-to treatment of this condition is to remove the type of fat that is absorbed by the lymphatic system and replace it with a fat that is absorbed by the cardiovascular system. This meant a diet change- off breast milk which contains long chain fats/triglycerides, and onto a milk which contains medium chain fats/triglycerides (MCTs). Suffice it to say this bummed me out like nothing else- I was so looking forward to getting our baby back all super energized and ready to pick up feeding really well- it looked like this would have to be put on hold for quite some time potentially. The diet would need to given between 2-6 weeks to allow for the lymph damage to repair- then we could go back on breast milk afterwards.

So we did it- we started on Portagen, then switched to Monogen after consulting Cecilia's nutritionist. Luckily, she took to it really well-ish. She didn't seem to mind the taste, so she dodged an ng-tube! Woot! But then she started spitting up almost every feed, began having some pretty uncomfortable diarrhea AAAAAndd then Friday night she developed some pretty awesome loose stool with blood all up in it :(. Boo. She was coming off of her antibiotic (vancomycin) and there were some other things we considered might be the culprit, but by Sunday morning the blood hadn't resolved and they decided, since the volume coming off of her pleural catheters and chest tube (the drain tubes) were so low and had become normal serous fluid (clear pink liquid), we'd just put her back on breast milk and hope for the best. I've always been a fan of roller coasters- way more interesting :). I hope I'm recalling all of this in the right order- I'm sure I'm leaving things out... so, you're welcome! It makes this explanation a wee bit shorter!

So now? She's on breast milk, is having almost normal poos, is eating pretty well and the fluid hasn't increased or become cloudy- so far. We will be monitoring her closely but the docs said after 2 weeks post-op we should be out of the woods with fluid buildup in her thoracic and pericardial cavities. She'll be fully recovered after a month or so but we'll still need to keep her extra germ free for the next couple of months at least.

Everyone taking care of our little girl has just been rockin- I'm not surprised at all by her fan club, but it's just so so so sweet and overwhelming- I could never thank everyone enough for helping to save our little Cecilia's life by giving her this opportunity to thrive. These bumps in the road will be so far behind us soon, but I'll surely remember it all as a very special time when we all banded together to do right by her.

So here are a ton of pictures thanks to Mark's great taste in the extravagant amount of pictures I've forced people to take- including Cecilia Mae! :)