Tuesday, October 22, 2013

The Princess and The Pea

Do you know any kids who will raid the cookie jar? The candy stash? Well our kids are downright deliciously deviant - I caught the princess raiding the refrigerator for snap peas.
Bedtime had come and gone, the house was  going quiet, and I stepped out of my shower, to hear a rustling in the kitchen.
Yeah, I know, talk about bad memories.
And there she was, in all her glory.
"Princess, what are you doing out of bed? Don't you know the kitchen is closed?" I chastised.
"I'm hungry, I only had one fruit at fruit time (our answer to before bed snacks). So I'm getting peas."

How can a mother say no to eating more green vegetables?

Thursday, October 17, 2013

On Unexpected Visitors

To set the scene: it's 4:00 AM, (for those of you out of the loop, my clock tells me such a time does actually exist) I've just finished feeding Bubbles, and packing him back into bed. I realize my phone, which doubles as an alarm clock is in my purse, hanging on the hat rack in the kitchen. No time like the present to get it, right? I really should have reconsidered that decision . . . 
As I crossed the dark dining room leading up to the kitchen, I heard a rustling noise. Yes, I know that houses settle at night. But they DON"T rustle. I'm so sure of that, I turn the kitchen light on, and immediately turn it off again. I. Caught. An. Animal. In. My. Kitchen.
I shut the kitchen door to keep our friendly critter - perhaps a raccoon? possibly a possum?- corralled. Then I run to the bedroom and wake Daddy up. This is no time to let him get his beauty sleep. It is also no time for the snooze button, no sirree. Up and at 'em!
The bleary eyed hero and I, now armed with a broom, (want to sample our hospitality, don't you?) head for the last known address of Mr. Furry. Daddy insists he sees nothing, and I become convinced I am hallucinating. Sleep deprivation does that, y'know. But lo! What furry face yonder peeks from behind the hat rack? We seal off the kitchen, and provide egress via the back door. Daddy heads out to the porch, trying to poke our visitor with the broom from the vantage point of the window. When he returns unsuccessful, we cede the area to Mr. Furry for now, and head back to sleep. 
Fortunately, Mr. Furry can take a hint. Knows when he's not wanted and all that sort of thing. 
Next morning, the Professor and I with our trusty broom and mop head for the kitchen, and check every single nook and cranny, big enough or no, for the interloper. Happily we report the all clear to the other kids and breakfast begins. 
Rest assured, if you show up at our door, we will shoulder our broom and mop in interests of of keeping the peace, so come on over.

Monday, October 7, 2013

Playing Catch Up

Okay. Just in time for a busy holiday and mothering season, my blog started acting up. Things not posting as scheduled, etc. Anyway, I think I've sorted it all out now. I hear you loyal readers (yes, all two of you!) cheer. And that's good, 'cause I've made the executive decision to fast forward a bit, keeping some parts as just headlines, so we can , y'know, get up to speed here, and be writing about current events, not ancient history.
So, we got the okay from all departments to bring our bundle of joy home. Yay!
Then we got hit with the realization that we were waaaaay under prepared for all this. Boo!
We cried.Well, I did. Daddy seemed to have more of the hang of things then, and felt pretty confident that he'd get this down to a twice weekly changing. Boo!
My Mother came to visit uh, takeover, in a very good kinda way. She did everything from cooking to carpools to laundry to candy store visits with the kids. Yay!
We were given the green light to circumcise Baby,and named him. Henceforth he will be known as Bubbles, since blowing bubbles is his favorite form of self entertainment.
G-d sent us an angel in the form of a friend-of-a-friend with a NICU nursing history. Miss S quickly set my fears to rest, watching me change Baby and insisting that I "do it better than some nurses". Yay!
Miss S and our other kids got along so well, that she came a few weeks later bearing exciting gifts for them all. The biggest gift she gave them, of course, is a calm Mommy.
My Mother went home . . . Boo!
But we weren't in the lurch long, as Daddy's parents came and took over in their bountiful way. The kids haven't eaten so much candy and ice-cream in a loooong time. All kids deserve grandparently (hey, I made up a word. My blog, my rules!) spoiling from time to time, right? Right.
So things are settling down into something of a routine, some of which is a gift from the NICU: they put Bubbles on a feed schedule, which frees me up to know when I can tackle laundry and cooking and doctors visits.
Thought we were done with doctors when we left the hospital? Think again. They would not release us until we scheduled follow up appointments with Surgery, Hematology, and Genetics, and of course well visit with Pediatrics.
More on that as we have it!

P.S. I know the blog sounds very Bubbles right now, but we will tell you more about the others now that we've caught up. Promise.

Friday, October 4, 2013

Long Road Home, or, Pull Out Your Biology Textbooks

Before wheeling Baby to surgery, they ran surgery specific blood tests and discovered thrombocytopenia. We were warned that this put him at slightly higher risk for needing a transfusion, but that it was safe to operate regardless. Of course, they would keep careful eye on his bleeding, and let me know if a transfusion became necessary. These results were forwarded to the hematology and genetics departments, so that they could keep an eye on his development too.
There was a further dip in Baby's platelet count, so he was given some randomly donated platelets. We waited with baited breath to see if "his numbers would stabilize" in the words of Dr. P, the neonatologist on our team. 
So now, the surgeon's word that we were free to go on Monday was no longer enough. In fact, we had to have our "case" signed off on by the neonatologist, the pediatrician, the geneticist, and the hematologist before we had any hope of bringing baby home. 
Dr.P told us Baby had to reach two milestones before leaving her care: He had to keep the oxygen level in his blood up to par without help, and we had to prove he had no infections(thrombocytopenia is often a symptom of underlying infection). 
Dr. S, hematologist assigned to our team told us that Baby had to keep his platelets up in the safe zone for an indeterminate amount of time before she would release him. 
Genetics sent down a doctor to get full family history from us and tell us that they were trying to find an encompassing cause for a)baby's presenting problem of IA b)baby's thrombocytopenia and c)baby's low oxygen saturation. 
Dr. K, our trusty family pediatrician almost threw a party the day he discovered that Baby had a broken collarbone. It's not every day, you understand, that a humble pediatrician comes into the NICU and can diagnose a baby who has been poked, prodded and poked again by experts. And he, Dr. K had made such a diagnosis. Hallelujah! We all agreed this break was a result of Baby's somewhat stormy entrance into our world. (Dr. K tried to top his trump card by putting forth the idea that baby not breathing well and his low blood levels were due to the break. Dr. P reluctantly agreed this could be possible.) 
On this note, enter the OT. To paraphrase Uncle Moishy's famous song: Our team grew bigger, every single day. Our team grew bigger we couldn't stop it growing . . . The OT insisted we rig Baby up in a sling to immobilize the arm. When Baby showed his fighting spirit by leaving the sling in place and wiggling his arm out, the rest of the team adopted a "we won't tell if you won't tell" attitude, and let him be. The shoulder wasn't obviously bothering him. 

It seemed to me that the longer we stayed in hospital the more complications we had. Can we extrapolate that it is the hospital that is at fault for health complications? 

Meet the Ostomy Pouch

In day to day life terms, having an infant with an colostomy means changing bags of stool rather than dirty diapers. Okay, that shouldn't require more time or resources than a diaper change, right? WRONG. WRONG. Wrong.
I had an appointment at Baby's bedside with our DC, Carmelita. She brought along two WOCNs to do the work while she explained the steps involved in a bag change. The theory is very pat:Every three to five days (the expected time a bag could last) take off old bag and "wafer" (that's a disk shaped adhesive which sits on Baby's tummy, just around the sticky-out-bit of intestine) with a soapy wet cloth or paper towel. Rinse area with a non-soapy wet towel and DRY well. Measure stoma (another word for sticky-out-bit) and cut out the donut hole to size in a fresh wafer. Warm the wafer - we just rubbed it between our hands, but people do you things like heating blankets and blow dryers- to activate the sticky goodness. Plunk wafer over stoma and smooth down onto skin using gentle pressure and heat to make a good seal. Peel the backing off the adhesive on the bag itself and stick to the wafer. Done. Simple. Or it was when I watched two highly trained and experienced nurses do it, with me holding Baby still and keeping him calm.
 See the wafer and cute teddy bear pouch? Yeah, they look easy to handle, don't they? It must be the squirmy baby factor that does it, is all.
Anyway, there was just one important thing to keep in mind. By any and all means possible, do not let baby get a diaper rash on his sensitive tummy skin. No problem. The wafer covers the skin, well sealed, and the icky stuff sits in the bag, not on the skin. Easy as pie. Now you know why I don't bake. I don't find pie easy. The nurses all assured me - over and over- that I would "get used to it" that I would "find a way that works" that I could "experiment with different products to get a good seal" that with "trial and error" I would become expert. At the time, I thought that meant it's easy, it just takes getting the knack. I should have thought about all the red flags in their reassuring language. Trial and Error? Lots of Different Products to fiddle with? I'd like it down to a science, it seems more of an art. Ahh, the ignorance. The bliss.
I did change the pouch system once when we were in hospital. The nurse on duty told me to do it however I felt comfortable, she would just watch and comment if absolutely necessary. So it was. I think the seal on the pouch-and-wafer that I put on held out about 2 hours. So much for 3 to 5 days! And they told me to teach Daddy how to do it! Blind leading the blind, people. (To be fair, when we got home Daddy changed the pouch and it stayed clean for 12 hours. He managed that trick TWICE. Easy as pie. Guess who has been hired to bake around here?)

To close, I present a random moment from sometime during our hospital stay:
Nurse: what's his name?
Me: He doesn't have a name yet - we're waiting to circumcise him and name him then.
Nurse: That's okay. Just make sure it's a name you can yell in a crowded mall. I mean, some names parents give their kids. . .
We'll do our best to oblige, thanks for the sagacious words of wisdom.