Mallorie is still in the Progressive Care Unit (PCU), working on getting back to getting all of her nutrition through her feeding tube, instead of her IV. She's doing pretty well at that, but it's a process. At first, her belly would bloat and she seemed really uncomfortable, so we had to slow down. Then we tried some "home-style" feedings of baby food chicken and carrot added to breastmilk, but that really seemed to slow things down. So now most of what Mallorie is getting is this:
I've said before that some children are blessed with more than one mommy. Mallorie is one of those blessed little girls, who right now is being fed through the sacrificial gift that only a mommy can give. Every once in awhile, someone will say something like this: "I keep forgetting to ask you this. Where is the milk coming from?" I don't have a simple way to answer this, but when I do try to explain, I also try to mention that this is a huge gift, and the reason that I would rather thaw and store the milk in a cooler with ice, and get up several times a night to refill syringes myself, instead of having the in-hospital Milk Bank thaw whatever amount they predict she will need in a day, and then stick an expiration date on it, so it must be discarded if her feedings are slowed down or put on hold. And why I prefer the little 60 cc (2 ounce) syringes that must be refilled over and over, to a feeding bag where 20 cc of milk can be lost each time the bag and tubing are rinsed out. No money was exchanged for Mallorie to receive this gift, and no "fair" price could ever be placed on this milk. Each bag was stored by a mommy with other responsibilities, including a little one who's also receiving milk from her, and Mallorie was chosen as the recipient of extra milk that is pumped and frozen. It's so easily digested that one doctor even commented that they want to "challenge" Mallorie's gut a little bit, and breastmilk isn't really a challenge. It provides antibodies to protect her gut, and since I've learned about that "transmigration of bacteria" concept, I believe it's protecting other areas of her body, including her bladder and kidneys. I cannot tell you how grateful I am to have this as Mallorie's first feedings as she recovers from surgery.
And Mallorie got other gifts today, when some friends visited. Her own personal hospital gowns, made by the same talented lady who made Annabel's gowns.
They were delivered in person by Cathy. My thought was that since Annabel and Mallorie are sisters (right?), maybe we'd be able to get some pictures of them together. But I forgot all about the fact that Annabel and Cathy are somewhat of celebrities here, and everyone on the floor knew them. So we had to visit in the family lounge, and I finally got to hug this sweet angel for awhile.
Annabel isn't feeling her best today, though you couldn't tell by her smile. This girl exudes joy whenever anyone makes eye contact with her, or touches her. I've never known anyone like her. Please pray that her doctors can once and for all figure out the best solution for keeping her healthy, and feeling much better.
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”