Wednesday, December 18, 2013

Parenting Success!

The Princess was indulging in one of her favorite pastime, singing at the top of her lungs. This was frustrating the professor, so he retaliated by getting in her face. (Yes, she sings on key.)
A few minutes later, Princess prances into the room with a huge grin on a her face. She approaches me, close enough to share her exiting secret.
"Mommy," she said, face glowing "The Professor was annoying me, so I ignored him, and after a few minutes he gave up."

So they do listen to me. Sometimes. Thank G-d.

Thursday, December 5, 2013

A Comedy Of Errors

Before I get to the meat and potatoes of this post, a little highlight on the Professor. He got into the car when I picked him up from school, crossed his legs on the dash and announced, "Mommy, Bubbles is never coming home." Whoa, there big brother! I mean, I know you miss Bubbles,we all do (wouldn't you miss the cutest infant to crawl this earth if he disappeared for two weeks with no return date in sight?). I explained - as we had on Day One- that Bubbles was born with some G-d given surprises, and he doesn't want to stop surprising us (by us I include our family and his medical team). So G-d only knows when he's coming home and frankly I trust G-d to make that decision!

So today. I arrived at Bubbles's bedside this morning in time to welcome our friendly Dr. B. He explained that Bubbles would be heading down to radiology for yet another test, mainly to confirm the results of the last test and give us specific actionable parameters. Dr. B. is a surgeon, they like to act on a problem. And Bubbles can't eat until the test is done. No problem, he's not really eating as it is.
Just as Dr. B finished explaining the procedure, Bobby arrived to take us downstairs. Couldn't have timed it better. When we got to radiology, the nurse checked over the orders and the patient. Just a formality, I'm sure, but THEY DIDN'T MATCH. Apparently, there was supposed to be a dye inserted "per rectum", but our Bubbles, well, he doesn't have a rectum. Those of you who are familiar with James Herriot will be very familiar with this condition as manifest in the porcine world, and will know that nothing (thermometers, liquids) can go up that way. Regardless, Bubbles and I hung out whilst everyone got in a tizzy calling for more precise instructions. I did tell the technician that in the past they have done similar testing through the mucous fistula, and in fact that is what we ended up doing. Once we had the orders right, the nurse proceeded to give an IV dye through the PICC line, only it didn't work. I saw them uncouple the PICC from the IV upstairs and it was working then . . . but not now. We were unceremoniously shunted back upstairs to fix this situation. Perhaps we'll be able to get the test done later, no eating allowed in case it is sooner than later.
By the time we'd gotten upstairs our nurse contacted the NICU to get one of their nurses to deal with our teeny-tiny veins. Their was no one available to come help us, so we were on our own. Three nurses and one surgical resident later, we had a fresh IV port in, and a screaming baby. Great preparation for a test which requires him to stay still. Asking a three month old to stay still. A three month old. To stay still. Easier to get Mount Everest to join Mount St. Helens for a poker game.
Once we got the green light for our procedure, we were in such a rush we couldn't wait for transport to send for us, so our friendly surgical resident ("Test or Bust! We will make it happen!") wheeled us down. I think he was extremely interested in the study for some murky ends of his own. And then the fun began in earnest. One nurse and resident at the foot, struggling to draw blood. One nurse and I at the head struggling to get Bubbles to drink some dye. One radiology tech scurrying to ready the machines. One baby screaming and kicking, and one aimless nurse just running for the fun of it. Everyone in the know was muttering about the difficulty to come - taking still pics of a squalling infant. Once we were convinced that none of us could do more than we had, the radiology tech and the nurse at the head hog-tied Bubbles, who promptly fell asleep. G-d loves us! In twenty years or so, when Bubbles and I have gotten over the experience, I must send him back to shake some hands and thank them for putting up with him in his time of need.

Sunday, December 1, 2013

Vampires and Vipers

Bubbles has now been in the den of Vipers and Vampires for six days. So much for our earlier estimates of a day or two!
His daily routine, as far as I can tell is ingress and egress of fluids through, oh, nigh on a gazillion holes our friendly nurses have punched in his arms, legs and head. Sometimes they are testing, testing, testing his blood for clues to infection and so forth. Sometimes they are giving him antibiotics and other controlled substances (morphine, anyone?). At other times, he is hooked to the more innocuous "regular IV fluids". He was NPO (NBM for the English speaking) until day four, and then did not tolerate a challenge feed. Hence, fluids to keep him from getting dehydrated. The pediatrician warned us that if he goes too long without eating, we may have to start him on some form of "predigested nutrition" (makes you think of little birdies in their nests, doesn't it?) The nurse kindly clarified that terminology - "too long is when it is no longer a good idea to be without nutrition". Thanks Nurse J, that was clear as mud. But I digress.
When Bubbles let his trial feed loose, they threaded a naso-gastric tube in to suction out anything remaining in his stomach. It was obvious to those in the know that his intestines were not doing anything with the milk but sending it back up. When I asked how they knew, they pointed to the container of vomit hanging behind his bed. So? You have a Matisse there, he has vomit. Apparently, the nice amount of beautiful dark green it held was not just there to be pretty. In fact, we were all rooting for less output, and that, clear. 
Of course, with all the poking, prodding, and peeking the doctors found even more to fiddle with. 
(Just so y'all know, I am not anti doctor at all. Some of the most wonderful people in my life are doctors. It's just the syndrome they all seem to share "let's see what other care we can give" gets a little much sometimes.) Apparently, thrombocytopenia reared it's uninvited head, coupled with a rise in temperature, and subsequently a day of fevers and spikes. I explained to Dr. A, head of Pediatrics, who was holding down the PICU fort at the time that this was a chronic situation, we'd been dealing with it since our first go round in the NICU. You know, as one of those things we often see together with . . . Dr. A was unimpressed, and ordered a transfusion. Granted, Bubbles only had about a quarter of the usual number of these blood cells in his system, so we did as advised. We also dropped the two antibiotics Bubbles was already on in favor of four others.
One to catch the gram-positive yuckies, one to counteract the gram-negative bacteria, one in case we're dealing with a yeast. And one ring to rule them all. Since were now doing even more meds-in-blood-out action, we will be having Dr. E up to the PICU to place a PICC line, so that we don't have to keep pricking new veins when the old ones bottom out. Yes, Bubbles has the little red pattern of the well pricked (shout out to my Londoners here I think the nurses were vying for the best Seder table patterns) on his hands and feet and arms and legs.
Did I mention yet that we discovered Bubbles to be anemic (I think it was on day four)? Dr.B, the surgeon, told me that he's certain that it's a chronic anemia, such as one usually sees with breastfed babies. We agreed to leave it alone until we get Bubbles home where we can administer iron and vitamin C supplements. Betcha didn't know that Spinach and Orange Salad is a really good mix, as the vitamin C helps your body absorb iron. Well you know now. No-one can say I'm stingy when it comes to sharing what I've learned. See, I'm kind like that.
Today, day six, I am informed that Bubbles iron is becoming close to the limit. Apply here if you want specific numbers. We're praying that it will pick up now that he's eating sometimes. I've been told that the transfusions for iron - in contrast with platelets- are not a very exciting prospect. It may even affect his come home time.
Speaking of which, with Dr. B. and the Infectious Diseases people (welcome to our team, the latter!) out of town for Turkey Day, we await there pleasure discussing a discharge day. We may be able to bring Bubbles home in the next few days if we can wean him to fewer dosings of his cocktails. It's just not practical otherwise as we'd have to have a home health aide in to dose him up, and that just wouldn't fly if it's multiple times a day.
So this brings us to yesterday - his temperature down for 2+ days, little clear output from his tummy, little pain, and holding down some Pedialite- our little one was bumped out of the PICU! Thank G-d!
And today, spent a nice few hours with the rest of the family at a beautiful nature center, which was just what the doctor should have ordered for us. 

Tuesday, November 26, 2013

Big Boy's Big Heart

I know you're all still recovering from the last post, but this is a quickie I couldn't resist: 
I took Big Boy with me to a necessary stop at the 99Cent store. (Yeah, I know, never take kids to a store. Especially one with toys in it!) He did not ask for one toy.

He asked for many toys.

For Bubbles, who - and here, I quote- has none toys or stuffs in the hospital.
Now tell me, can I stand by and be outdone in caring by a three year old?

Expect the Unexpected

Today we went for a routine pre-op contrast test.
And it didn't go so routinely. I mean, we had been warned that there were risks as with all medical procedures, y'know, so we didn't really think much of it.
We went from the Imaging Center to the PICU. One thing I have to say for the trip is it was fast. Bubbles was crying during most of the transfer, and they did not want me to feed him, and you KNOW how slowly time passes for a mother who can do nothing to comfort her miserable child. All I'm saying is with lots of help, we were transferred up to the PICU in record time.
Did I mention it was a routine test? I didn't even have a pacifier with me, much less carpool plans for the others. Whatever. I did have supper lined up, since I knew I was going to be out for a few hours in prime supper making time.
I stayed while Bubbles was made comfy and re-acquainted with his "pulse ox" and IV and catheter and other goodies. I may be painting that too strongly - he fell asleep on the last lap up and slept through it all. I did find my bearings with all the now-familiar paraphernalia. An especial feature of this go round in hospital is antibiotics. I was told that I could hope to bring Bubbles home in a day or two, once the medication stabilizes the situation. It all sounds very major on paper, it really didn't seem such a big deal in person.
Daddy picked up the others from school and heroically got them through lots of questions and supper and homework. Then, as he was giving a class tonight, and Bubbles was sleeping comfortably and cared for, I came home for bedtime and to sit with the kids.
I found I could not tell my son "there, there, you're all right" with any truth to it, so I sufficed with a lame "you'll be okay. you'll be okay". At one point I realized that I meant it. With G-d guiding his care, how can he NOT be okay? On second thought, maybe this is the new okay. This is a gift, this chance to recognize how much can go wrong, and how much doesn't go wrong.
I tucked five boisterous, healthy, happy youngsters in bed tonight. I changed diapers, in the usual fashion. I applauded strong efforts in schoolwork. I was hugged by many arms, just long enough to twine round my neck. I am truly blessed to be given this contrast test (home chaos shows up so much better on a background of hospital beeps) to help me recognize and appreciate my blessings.

Monday, November 25, 2013

The NICU, part 2

Due to hospital by-laws, I was transported by wheelchair to the NICU to see our beautiful, if not bouncing, baby boy. I would have done better going by tortoise, so slow was our progress. Eventually, we did get there, at which point I was left to my own devices. (I could have walked the floors, for all the nurses would know.)
There was a cheerful sign adjuring all parents and visitors to scrub at the scrub sink in "Bay 2".I don't know how it works in other hospitals, but Cedars-Sinai's NICU is divided into six large rooms, each called a Bay. See, I'm teaching you important things already. Like how to speak "Overstaying-our-welcome-in-the-hospital-ese". I spent my minute or so scrubbing my arms and being sprayed by the super soaker that is the scrub sink in Bay 2. Next stop was Baby's bedside. 
Baby's NICU home
If this was a typical sick baby log, I would invite you into my hysteria and shock on seeing the little awesomeness wired up and surrounded by glass. BUT . . . I am nothing if not atypical :). Instead, I'll let you in on a secret. This was not my first time meeting an unwell baby in the hospital. As a teenager, I helped out a neighbor by spending the nights with her baby while she was home with her other children. I even rocked him in a rocker and fed him. So, no shock factor here.
Still, a friend's baby and our Baby are not the same. Our baby had an IV dripping into his arm. The tubing was as thick as his fingers. He had another, thinner tube - reminiscent of a colorful Crazy Straw - in his mouth. This was there to relieve his stomach of any waste buildup, as of course, it had no place else to go. He also had a cannula delivering oxygen to his nose. Oh, and multicolored strands of wiring hanging from his foot, monitoring everything and anything the doctors could think of tracking. I sat and sang quietly to him- for lack of anything to say- while I waited for "his" nurse to come introduce us.
My eyes wandered the room, checking it out. That phrase sounds familiar; I hope I do not plagiarize. It was dimly lit, hushed (except the occasional rhythmically beeping machine) and sterile. The nurses wore a hodge-podge of hospital attire. The duty list of nurses was written out in a bold black hand on the whiteboard in the corner. There were 8 beds in our bay, only four of which were occupied that Thursday afternoon. Just across from us a ventilator hummed, keeping one of our room-mates oxygenated. I thanked G-d for all the healthy babies - mine, yours, hers- who were not confined to glass cots and ward procedures. 

Thursday, November 21, 2013

So, what did you do today?

Warning: Looooong post ahead. And it only deals with the before lunch bit!

What can I say? This was a very busy day, and a lot for me to digest. You, my dear readers, are stuck with the fallout: I digest best by disgorging my thoughts on paper. Let's not be overly careful with semantics here, y'all know what I mean. So hold on tight.
To confuse the issue just as we begin, the excitement actually began last night. In honor of Big Boy becoming and even bigger boy and reaching the heady heights of three years old, we cut his hair. (Gasps all around. Some moans, too.) See what a big step this was here:

Big Boy Before
During The Shearing
This is haircut initiation Number Four for us, and I have never had to hold so much as a hand for the others. They were all excitement and grins. Big Boy was all trepidation and hold-me-please . Of course, I held him tight,(see the picture? proof that I make an awesome hairdresser's assistant - bet you wouldn't have thought of me in that position)shifting him around in my arms when necessary for the operation at hand. And before he could say his ABC's, the deed was done. The ponytail was no more, and our little face was actually visible, no longer hidden behind a veil of cascading waves.

Examining The Finshed Product
Sorry the last picture isn't the best -trying to fit in Big Boy's own examination of his new self and flashing in the mirror. . . Still, it gives you a great idea of what went down! Big Boy was so apprehensive about the whole thing, despite the propaganda job done by the Princess in the few days running up to this event. I do believe candy featured very strongly in her advertising campaign.
After the deed was done, the other kids organized the traditional march-with-song around the table. Usually, the birthday boy gets so "into" this activity that it becomes a disorganized run-with-shouting through the house. To the utter disappointment of his siblings Big Boy marched around the table once. With much coaxing. Then he returned to my lap, where he remained ensconced until bedtime. 
What fun would growing up be without big brothers and sisters to help you through these rites of passage? (No offense to any of you younger brothers and sisters out there -there's room for you in G-d's world too!)
Whew! We made it to bedtime. If you're still with me, let's fast forward to this mornings 5:00 wake up. Usually, Bubbles sleeps very contentedly until I wake him to eat at 6. Today, we pulled things back an hour, so that we would feed him next at 7, so that he would be "empty" when we took him in for some tests. Remember, it's just to rule things out. Okay, so you know we're running on empty of sleep.
Daddy dropped Bubbles and myself off at the Imaging Center, where we were greeted, and asked to wait in the lobby to be called. We wait. We wait and wait. Long enough to correct a whole page of Daddy's article for posting. Then we're banded, branded as a matched set, belonging together.  We proceed as directed to the window down the hall, present our wristbands and tell the lady what we're in for. As an added courtesy, we each get a sticker with reads "mult proc." For the uninitiated (hopefully that's all of you!) that means we're in for more than one procedure this morning.\Our lady of the window directs us to sit in the room across the hall. This wait is long enough to field a call from concerned family living far away. My little brother, all growed up and building a family. Sweet of him to call just now.
Finally, my hungry little one and I are called in for his ultrasound. Picture keeping 12 pounds of sheer hungry baby absolutely still for this. The technician was none too understanding either. I mean, the kid is only three months old. He hasn't mastered the freezing in place thing yet. And, Mr. Unfriendly Technician, I much doubt you did at his age. So thanks for doing your job and getting us some "serviceable" pictures. Maybe next time, you'll do it with a serviceable attitude. We really were not trying to start your day off with difficulty - a baby does not squirm with intent to do your schedule in.
Mr. Unfriendly Technician became very friendly once the job was done. Very talkative too. He knew that our next test was a VCUG, and he commented on it "You know, it's not so bad having these done when your as young as Bubbles is. I mean they do these tests all the time, and it can be kinda painful. But when it's over, he won't remember it. What I don't get is how adults get through it." And so on in the same very encouraging vein. Hello, sir? I am a mother, whose child is about to lie through that procedure. I don't really need your clumsy attempts at calming me. I was not worrying about the actual test until you opened your mouth. So . . . On to the next room, and a full complement of personnel for this one. All friendly. What a contrast to the last room.
Little Bubbles lay on the table, diaperless and fearless. He knew not, as I did, what lay around the corner. The doctor told me at just what point we could expect some discomfort -with the swift assurance that it doesn't actually hurt it's just uncomfortable, so babies tend to cry. Yeah. Uncomfortable. A euphemism if I ever heard one.
After an initial x-ray, everyone got busy in their battle stations as the nice nurse Rachel threaded a catheter. I am not going to draw you a picture here, (I do have one word worth a thousand pictures for my Baltimore friends here: urologist) I just stood at Bubbles's head and held his hand and talked to him. Except when I was looking over at the screen making sense of things. I was able to accurately pinpoint his bladder - okay, so it was full of contrast dye and looked like a big black blob on the screen- but I could not figure out what that chain of black dots and circles was. So I asked the guy manning the screen, and he looked at it for a very long moment (yikes!) before looking at Bubbles himself. They were the snaps on Bubbles's outfit. We passed the point of pain - I mean discomfort, obviously- with nothing but a single whimper from Bubbles. After that cry, he went back to grinning at me while I talked to him. And then we had the long wait until Bubbles let loose a fountain for us. The x-ray tech told me he had one kid who sprayed the opposite wall. (That requires another shout out for my Baltimore clan: tiger cage anyone?)
I say the wait was long, but that was only because I was in something of a rush. Because we were only seen at 11 for a ten o'clock appointment, I had to recalculate my day. We were supposed to bring Big Boy in to school for his initiation into the study of Torah, which goes hand in hand with the hair-cutting milestone. Of  all the days in the month to pick for these appointments, we managed to land on Big Boy's birthday.
Once the interminable test was finished, I walked to a prearranged meeting spot, and we were picked up by Daddy, making it by the skin of our teeth to the school. The Professor and Sporty joined our entourage in the hallway, and helped Big Boy feel comfortable with the big kids in the Pre-1 classroom.
Here Big Boy sits in the place of honor next to the teacher, who is coaching him on Hebrew Torah letters. It was quite an affair, with much singing and dancing on the part of the boys in the class and our kids. Of course, no party is complete without event-appropriate goody bags. Ours were shipped already filled cross country for less than the price of the bags here. Just some unsolicited advice here, and you're getting more than you paid for with this: Don't go nuts finding bits and pieces and junk to fill your bags with. Find yourself a full service purveyor and let them do the work. It was nice to be back in this classroom with this teacher, as he taught both Sporty (last year) and the Professor (four years ago). It's a small school, and the teachers remain available to past students, so we've been "in touch" all along. Big Boy of course benefited from this, his logic being if this guy is on such friendly terms with my brothers he must be okay.
When the party was over, I dragged around the house catching up on cooking and housework which went by the wayside with all our activities. I love partying, but it sure takes a lot out of me!  

Wednesday, November 20, 2013

Dreaded Phrase

"This is something we often see concurrent to the ARM Bubble's has - we're just going to (insert medical procedure/testing here) to rule it out. And then you will have to follow up with (insert specialty here)."
If I had a dollar for every time a doctor said this to us, I'd pay for all these procedures-and the hospital stays!- out of pocket.
According to my Gmail contacts list, Bubble's team is now 20 strong. Some of the contacts listed actually refer to DEPARTMENTS not individual team members. And counting.
Daddy actually asked the surgeon, when he gave us this line for the gazillionth time,why we keep hearing this. Dr. B. told us that most parents cannot handle knowing all the possibilities at once, so they kindly give it to us piece meal.
Right now, our focus is checking for spinal defects and possible back tracking in the urinary tract. Once we clear that, we can shift to surgery mode. Since scheduling surgery requires so many factors to come together, we have already scheduled it, without knowing exactly what will be done. We have to wait for testing to determine that. Once all that Cutting-and-Pasting is out of the way, we'll start on physical therapy, possibly speech and occupational therapies as well -- because, you know, "We often see developmental and cognitive delays concurrent to Bubble's presenting ARM. So, we're going to be proactive and enroll him in the Early Bird Avoids Unnecessary Difficulties Program. We're confident that he will be accepted to the Program with his medical history."
We know (because we've tried) how hard it is to join this program, so we held our breath through the application process. It seems that severe shortages of therapists and social workers don't get in the way if your case is referred by a doctor. If we'd only known this when Careful wast not talking, we may have secured services for him too!
Obviously, that wasn't in G-d's plan for us. 

Tuesday, November 12, 2013

A Day Off

[This is an old post that I did not manage to finish in one sitting, so am publishing it now]

Today, we all took the day off to enjoy a visit with our children's paternal grandparents. Grams and Gramps live many thousands of miles away, so we were very excited that they scheduled themselves a stopover in our neck of the woods.
Just how excited were we? Excited enough to keep the kids home from school. That may not sound like much to you, but we value education. (And keeping the kids occupied, and the mess out of the house . . . )

And we value the Momma-sanity that comes with a routine school day. Never say I'm not being honest with you, people. 

We had a rich man's start to the day, heading out for breakfast at ten. The kids raided the fridge and came up with yogurt to snack on in the earlier hours. Careful loves any food in creamy form (milkshake, anyone?) and helped himself to two - one regular, one soy based. The Professor professes an adverse reaction to dairy, and we're trying alternatives, so we have the soy stuff on hand.Whilst we adults breakfasted at a nice cafe, the kids took over all the available floor space for a spirited game of roly-poly. There was so much spirit roy-polying around, some of it could only find release in tears.

Gram and Gramps came, as usual, laden with gifts, carefully chosen to entertain. They did such a good job, the kids were wrapped up in their new swag to the exclusion of the rest of the world. Sporty was so attached to his new Lego helicopter that he opted out of the obligatory Grandparents and Grandchildren outing. That turned out to be a stroke of good fortune as Greystone Manor (aka Doheny Mansion), the beautiful park Daddy intended to shepherd all to, was closed.

A quick stop at home to pack up, and our visitors were off. . .It was a tighter squeeze than expected, and they missed their scheduled flight by 4 minutes. Thank goodness there was another flight about an hour later.

Sunday, November 10, 2013

Stick 'em Up!

Today, the Princess, Careful, Big Boy and I got stuck up. Before you turn us in for keeping our noses in the air, we are NOT snobs. We went for our flu shots.
Now, I'm not a usually a big proponent of shots with no clear benefit. Take the flu shot for instance. Really, what's the worst that can happen to otherwise hale and healthy individuals without the shot? Getting the flu, spending a few days in bed with a hot drink of your choice and a good book. So, we never had them 'round here before. Now they tell me that we all need the vaccination to protect Bubbles, who is in a high-risk group with all his surgeries, etc.
I went first, to show the kiddies how it goes,and how stoic I can be. It worked for the boys.
There is nothing the Princess wouldn't do for her baby brother. This, though, was a real sacrifice for her and she moaned and groaned the whole way there. When we go there she insisted on being stuck last. And she asked the nurse if why they have not perfected an edible form of the vaccine yet. (News flash, there is a nasal spray, which does not hurt the arm so much. But the pocket, oh, the pocket feels the difference - today's medical attentions were FREE.) She wailed and carried on through the actual ministrations, but quieted as soon as we finished.
Careful sat on my lap for the proceedings, frowning quietly as the nurse closed in and then insisting he earned the whole roll of stickers for his cooperation. We bought him off with soda, which they had conveniently placed on the tea and coffee cart. This maneuver quieted the Princess, who was happy to have a coffee.
Big Boy climbed on my lap following in Careful's footsteps, which is when I noticed a decided aroma. For me to notice any smell means that everyone else in a mile's radius is also being heralded by it. He had his shot just fine, but couldn't wait for the others to finish their drinks and leave. Methinks the diaper situation affected him more than the pinch in his arm did.
And we get to see all the same nice nurses again in a month or so for Bubble's next surgery. They're all looking forward to seeing us again. They were quite impressed with our quiet approach to the whole ordeal.
If it's your first flu shot and you are under nine you have to get two shots, about a month apart. Lucky for me, the boys will need the second dose, but not my sensitive girl. I don't know if I'd be ready for such carrying on any time soon.

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.

Thursday, September 12, 2013

Telling the Kids

When the kids came for their visit, they were shocked to find me with no bassinet in my room. The Professor (aged 10) came up with a shaky solution. "The baby must be in the nursery, right Mommy?" The Princess (aged 8) disagreed "Our babies always stay in Mommy's room with her - they don't go to the nursery." Sporty, (aged 6) just wanted to hold his baby already, so get it quick from wherever you've hidden it. Big Boy (aged 2) and Careful (aged 4) just wanted to hug their Mommy. They were more than happy to see me without a new baby. 

Kids, I explained, Our Baby is not here. Our Baby is not in the nursery either. In fact, our Baby is in a separate part of the hospital. You know how a Mommy has to stay in the hospital for a few days after getting a new Baby, so we can make sure the baby is healthy before going home? I waited for them to nod their understanding and continued. Well, G-d made a surprise in our Baby. He looks just like you do - he has Princess's beautiful reddish hair, Sporty's upturned nose, Careful's mouth and chin, and Professors eyes. We all know that nobody looks quite like Big Boy. But our Baby cannot go to the bathroom like you do - he cannot even use a diaper like Big Boy does. Inside, he has a tube - just like we all do - leading from his tummy to his bottom, to take the dirty stuff out. Only, his tube doesn't go to his bottom, it got a little mixed up inside. So, he's in a special part of the hospital where he can be watched really well and he had an operation. Now the dirty stuff comes out from a special hole in his tummy. Because he had an operation, he can get sick much more easily,so they don't want him to have too many visitors while he's in the special part of the hospital. Can you wait to meet him on Monday, when he comes home? 

They were OK with waiting (phew!) but were concerned I would have to stay that long too. I was flattered to be missed, and reassured them that the hospital doesn't let Mommies stay once they know how to take care of the baby, so I would be coming home Saturday night. 

That was a lot easier than I expected, and the kids took it all in calmly. I wish I could say the same for Daddy and myself!

Wednesday, September 11, 2013

Healing Well

After the colostomy surgery, Dr. B came down to give his what to expect probabilities and possibilities speech. As Baby had been under general anesthesia, he was also "intubated" - he was helped to breathe. The tube would stay in until Baby was breathing on his own. Being the big fighter that he is (an important thing when you are child number six in a family of boys!) Baby was preparing to do so as we spoke. If we didn't rush to meet Baby in the NICU, we would miss the chance to see him with the ventilator.  We risked that, and when I next saw baby he was only hooked up to the same mass of wiring he'd had before the surgery.
I noticed that the IV fluid was a different color, and asked our nurse what that meant. She told me that with an open exit route, Baby was now ready for "food" and was receiving it via the IV. We were waiting to see what output there would be before the go-ahead to feed him by bottle would come. Once we established the ins and outs were consistent and healthy, I would be able to sit and feed Baby. The doctors were set to determine a go home day based on Baby's performance. Come on Baby, I cheered, you can do it!
The next morning, which was a Friday, Dr.B left word with our nurse (they keep changing on me - I rarely see the same face twice) that as far as healing from surgery went, Baby could be discharged on Monday. Yippee! Don't get me wrong - everyone worked to make our stay in hospital as nice as possible. It's just not possible to feel at home in that environment is all.
Daddy and I discussed the pros and cons of having our troop of big ones visit with Baby. We decided to follow their lead: we would tell them the basics of what was going on, packaged in child friendly language, and gauge their reaction. If they were OK with waiting to meet their newest brother, as we hoped they would be, we would skip visiting the NICU. Otherwise, we would contact Dr.K's office to get their immunization records and take them up one at time following NICU rules. We further decided to tell all the kids at once, face-to-face when they came to visit me on Friday afternoon.
Ms. H, our social worker, set up a team meeting for us, which would take place in my room while Daddy and the kids were visiting. This way, Daddy and I could hear everything straight from the horses mouth, and could air our questions and concerns about caring for Baby's ostomy.
Daddy brought the crew and a picnic lunch for them, which was serendipitous, as my hospital lunch tray arrived just as they did. Suffice it to say my stuff was more interesting than sandwiches and cookies, so I shared. Once lunch was finished and cleaned up, I vacated my bed and the kids got comfy. As we live in an ancient civilization, we have no TV at home. So it has become a new baby ritual in our family to be treated to a show in Mommy's hospital room. Once the kids were ensconced on the bed and were done riding it up and down, I picked a kid friendly channel and watched their eyes glaze over.
We had our meeting with Ms. H and the Drs and Nurses with not a peep from the five kids in the room.

Tuesday, September 10, 2013

Babe in ARMS

When I close my eyes and lean back, I can imagine I'm sitting on the way-too-comfy couch at home, the familiar heft of a baby in the crook of my elbow. Baby wiggles deeper into the hug, and I open my eyes to look down at him. No, we're still in the alien world of the NICU. Still being waited on by nursing staff. I'm glad that they let me hold this beautiful bundle of wonder.  Did I just write that? How unnatural for a mother to need "permission" to hold her own son. And now that I am holding him, they buzz around me like so many busy bees on a warm summers' eve, the jailers of my Baby. 
Stop. I must remember they are NOT the enemy. They are blessed by G-d to help others. To help us.
At this point in our story, things get a little hazy: did I head back to my ward and call Daddy with an update first, or did I speak with the speak with the surgeon first? 
Loyal readers, I will tell it as I recall it, if not exactly as it happened. Bear with me - we soon get to more recent events, still crystal clear, and less clouded by the lack of brain birth brings on. 
Baby was happily sleeping, and I was falling asleep too, jerking awake every few minutes in a chair made for sitting. Can you believe they had no chair to sleep in at Baby's bedside? At one point, I gave it up, and left Baby for the (slightly) more comfortable confines of my own bed. I was not given the chance for sleep (oh no, what with vital signs to check and stool softeners to administer, the staff just had to wake me ever hour or so). At some point in this half sleep, Dr. K our familiar pediatrician showed up with Dr. B, an unfamiliar chief of pediatric surgery. They were also accompanied by an RN on Dr. B's staff whose name eludes me now. I use only the doctors' initials to protect the innocents involved.
Dr. K in his usual long winded, thinking as he speaks manner put me at ease with his assertion that Baby seems healthy in the usual Baby way. Then Dr. K. launched into his plan of action. Baby would be needing three surgeries just to correct the presenting ARM. Surgery Number One, which needs to be preformed post-haste would separate Baby's colon into upper and lower segments.The upper would end in a bump protruding from Baby's lower tummy (surgeon's wording here, hope y'all can follow!). That is where Baby would pass stool from. Once that surgery is shown successful, Baby can be fed.
I stopped listening at that point, deciding it best to take this all in step by step. Step one: check out baby for other often related complications. Step two: Surgery Number One. Step three: feed the baby, change the baby, turn the baby over. Step four: well, that's enough to digest just now. 
We waited with baited breath for test results to come in ruling out any other issues. Kidneys, check. Heart, check. Liver,Stomach,Small Intestines, check,check,check. Scans of the spine and pelvis. Bloodwork. and more bloodwork to double up on some suspicious results. 
A friendly gastroenterologist, helping us navigate the muddy waters of medicalese summed the situation up: "What it all boils down to is a bit of plumbing." Thank G-d no other organs were affected. No syndromes present. A healthy baby, as Dr. K said, with a "fixable problem" Dr. B added. 
And so, less than twenty four hours old, our Baby was wheeled to surgery. Daddy and I sat in my room and prayed.

Sunday, September 8, 2013

The NICU, part 1

Baby is in the NICU, all alone. Well, technically he is surrounded by an alphabet soup of competent care. RNs, MDs, FACSs, PEDs and more, in my mind's eye leaning over poking and prodding my little one. But he is alone - I'm a whole floor and half a wing away, and Daddy is at home with our other five charges. I don't want to wake him - my news will keep. Meanwhile, while I know that Baby is being cared for I wonder if anyone is holding him, singing to him.
I, the veteran of instant Skin-to-Skin, kangaroo care, feed-your-new-baby-as-soon-as-he-wants births, miss my Baby. We have been together through everything from mealtime to nap time these past months, and being separated this way is weird. I cannot visit with Baby until my own Nurse clears me to be off my goody bag - an IV of fluids to ward off dehydration. I've been told most mothers come in for birth somewhat dehydrated, so it's standard procedure this IV. I watch the pale golden liquid drip, drip, drip into the tube snaking out of my arm. I vaguely wonder what Baby's condition will mean in our day to day life. I try to think up intelligent questions to ask the doctors, realizing as I come up with a handful that they have already answered them. 
I know what's "wrong" with my Baby (wrong? with the way G-d in His wisdom made this baby?) and what steps we have to take to figure out how to fix it. And, once we've tested everything from his head to his toes and know what other complications we are dealing with, I know what possible steps we will have to take. All of them include surgery. None of them include taking him home when I am discharged. I thank G-d the hospital is practically in our back yard. 
I am not worried, which surprises me a bit.
Finally, I am untethered. I stretch a bit, stand slowly, and prepare to be wheeled upstairs. I ask the Nurse where the wheelchair is, receiving only a blank look. I explain slowly that I am supposed to go see my baby now, she tells me to get back into bed, she will see what's what. After five million fidgety minutes - or maybe it was only five minutes, who can remember?-Nurse returns. We cannot go up to Baby until they have him firmly installed in the NICU. I see that it's getting late in the morning, and call Daddy to let him know what's going on. I cannot answer his barrage of questions, mostly because I am still waiting to go to Baby and see for myself what they are doing to him. So we wait, with me thinking how ridiculous this is. What do they think I'm going to do - grab the baby and run?

Monday, September 2, 2013

In the beginning . . .

After nine months building anticipation, we were eager to meet child number six. Having lots of practice at this parenting thing, we were calm in the face of the impending new baby onslaught (think diapers, colic, spit up, nights and nights of no sleep). Ahhh, ignorance was bliss.
Before y'all go thinking this is just another birth story . . . we'll fast forward to the excitement. Our perfect little one, whose features and coloring were a great mix of his older brothers and sister, had the requisite 10 fingers and ten toes. He had a cute upturned nose, and typical overgrown belly button. His eyes were open, and he cuddled himself deeper in my arms as I checked these features off.
A few hours later, Baby was taken to the nursery for a bath and a heel stick.  A team of doctors came into my room to update me on Baby. Um, hello? Kid number six, number three in this particular hospital, and I'd never had so much as a doctor come in to say "Hi!" So you know someone's reading the script wrong here.
Turns out I was the one with the wrong lines. Our baby did indeed like being the center of attention, and needed a team of doctors on his side. As the doctors explained, Baby's form was as imperfect as my inspection of him must have been.
The doctors threw some words at me -imperforate anus, bowel obstruction, colon, colostomy. As far as I knew, they were speaking Latin. Like the good shell-shocked parent that I was, I kept quiet and listened to their attempts at explaining in the English language. Basically, our little guy had no way to- in their highly educated terminology- poop. No egress whatsoever for the icky stuff. In fact, his "pipe" didn't make it down anywhere near the skin.
 " So, Mom, we've moved him to the Neonatal Intensive Care Unit, and are preparing him for surgery, any questions?"

Just one: When do I wake up?