Sunday, April 18, 2010

Still here

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.


Annie said...

Two beautiful girls. Connie, such an interesting story about the milk. I too believe that it keeps special tri babies healthy and it was all I gave to my baby with trisomy 13. After she passed (not from infection or disease but discrimination and rationing policies) I found a milk bank in Ohio that was thrilled to take Annie's milk. So I donated for six months. Reading your post made me feel very happy. I wonder where all Annie's milk went?

I hope Mallorie is home soon.


Carley said...

I love my Mallorie baby... I do miss her. (and you, of course)

And what a sweet Annabel! :)

Jacquie said...

Doesn't she look so much better with those pretty eyes open.
Do you ever sleep? And even when you do, you're probably thinking.

The VW's said...

That picture of Mallorie is adorable! What a sweet girl! Still thinking of you and praying! Hugs!!!

Cathy said...

Connie, Mallorie looks so much better. I loved it when you said you see her coming back. To me when I came in the room she look like she was looking right at me. Oh it warmed my heart so much. Like you I wanted our little ones to get a picture together. They were all there waiting at the door when we entered the 7th floor and I thought they aren't even going to let us through. Thank you for coming to visit in the waiting room. I only was able to wash and dry them (use softner) once before bringing but they will soften up. Hope to see you in Beaumont very soon.