Faith is doing so well! She looks wonderful, her swelling is much better. The chest tubes are draining quite a bit of fluid, so she has to have a significant amount of replacement fluids and electrolytes to keep her from getting dehydrated, but even with the extra fluids she is getting she's not as swollen as she was.
She now has 5 potential sites for infection, between the 2 chest tubes, Broviac, and now 2 PICC lines. She has VERY uncooperative blood vessels when it comes to IV's and arterial lines... they had to do the second PICC line because her latest IV stopped working after only about a day. Then they tried to put in a new aterial line last night, so that they could stop poking her poor little heels again... they tried like 4 or 5 times, with different people trying, and they could not get one started, so they gave up. But, she is doing very well, we are being very careful to avoid her getting exposed to any possible sources of infection, and the doctors and nurses are keeping a very close eye on her so if she were to get an infection they would be able to treat it right away.
And, more good news- the night I posted about the doctor's news that Faith wouldn't be able to have my breastmilk, someone sent me a link to this article (<-- that is a clickable link). Today I said something to Mary Ann, our nurse, and she said that there is actually a milk bank in Denver that makes fat-free milk for babies with this condition! There are fees associated with processing the milk, but I am going to call them tomorrow and see what I can find out. I know a lot of people wouldn't have a problem with their baby having formula, or wouldn't understand why I would be so opposed to her having formula instead of my milk... so here is some information from the Human Milk Banking Association of North America.
"Human milk is the standard food for infants and young children including premature and sick newborns with rare exceptions.
Human milk provides optimal nutrition, promotes normal growth and development, and reduces the risk of illness and disease.
The unique composition of human milk includes nutrients, enzymes, growth factors, hormones, and immunological and anti-inflammatory properties that have not been duplicated.
Exclusive breastfeeding for six months is recommended with introduction of complementary nutritionally adequate foods at about this time. Optimally breast milk remains in the diet for two years and beyond.
In situations where mothers’ own milk is not available, provision of pasteurized, screened donor milk is the next best option particularly for ill, or high-risk infants.
Current research regarding human milk
Human milk is species specific and provides unique benefits.These include health, nutritional, immunological, developmental, social, economic and environmental benefits. The health benefits including long term decreased risk of a wide range of illnesses and infections last beyond infancy.
Feeding human milk results in both short and long term health care cost savings.
Most bioactive properties found in human milk remain viable after pasteurization.
Pasteurized donor milk for premature and high risk infants has been shown to reduce the incidence of necrotizing enterocolitis, sepsis, and infection, resulting in shorter hospital stays.
Donor milk has been reported to be effective for nutritional uses, post surgical treatment and provision of immunological benefits. Patients with varied comditions including bowel surgery (oomphalocele, gastroschisis), failure to thrive, formula intolerance, suppressed IgA levels (treated post liver transplantation), allergies, chronic renal failure, leukemia, intractable pneumonia, and HIV have responded positively to the use of donor milk."
I would think the benefits will be even better, since she can have my own milk. There is a lot of research to support the idea that having my milk, even processed to be fat-free, will help her to heal faster, avoid infection, and go home sooner than if she is on formula.
On a slightly negative note, I have developed an infection, probably because pumping is not nearly as effective as actually nursing... but we caught it early and I'm on antibiotics now to treat it. I don't know how I avoided this issue with Noah through 12 months of nursing, but now in 2 weeks already I'm having struggles. I still have a great supply though, which is really reassuring, especially with the troubles I had with that the last time. I also see my rheumatologist on Wednesday, and will hopefully be getting a lot of tests done to make sure that my lupus has stayed the same through all of this, and I think she will be starting me on a med that should help with the majority of my symptoms (the joint pain, fatigue, and some of the skin symptoms).
I have new pictures, I will post them tomorrow, I'm really tired so I'm going to get some sleep now...
7 months ago