Wednesday, April 30, 2008

And now the good stuff...

After all that, you deserve pictures!

GI Update & Upcoming Events

Mila's GI appointment went well, although it did NOT start off that way. The doctor came in, sat down, and said " So, Mila needs a gtube. " I thought Alex's head would pop off!!! He was just stunned, I think, to hear it put so bluntly. But the sad truth is that she does, in fact, need a more permanent method of nutrition. The NG tube does interfere with her eating, it likely interferes with her sleep, and it is horrible on both Alex and I to have to constantly re-insert it.
Of note, Mila will NOT be getting a direct MicKey placement, as shown here. Because Mila's liver is still enlarged ( this is caused by the heart failure, and will get better on its own ), there is a chance that the liver could be " nicked " during surgery in a direct, laproscopic placement. A camera is inserted down the esophegus, the stomach inflated with air, and then an incision made and the button inserted. The doctor does NOT think this is appropriate for Mila because of the hepatomegaly. ( Don't I sound professional? )


Instead, Mila will have two incisions made - one is likely to go directly through the belly button. The surgeon can then have a looky around to make sure that the everything is out of the way, and will insert a PEG tube ( picture below ). When the PEG insertion site ( called a stoma ) has healed, Mila will be switched to a Mic Key as shown above. This carries a much slighter risk of complications, can be left in for up to 3 months without changing, and requires only a bit of daily cleaning. No tape. No holding her down. The PEG is a longer tube, so it will initially be secured to her shirt or diaper so that it cannot be pulled, and it will likely have some stitches.

This may sound drastic, but in the long run, this is what Mila needs. Before that though, the doctor will be running two tests - a gastric emptying scan ( how fast the food leaves the stomach ) and a small bowel follow through. Both tests take a few hours. Also being run in the near future is a coronary angiogram to check the function of the repair in her heart, as it cannot be seen on ultrasound.

Today's feeding clinic went really well! Switching M to overnight feeds has REALLY taken the pressure off ( literally ) and Mila is showing interest in both the bottle and real food! HOORAY for Mila!!!

Mila's Statistics :

Weight : 19 lbs 11 oz ( 8.9 kilos ) - 10% Weight for Age

Length : 29.5 inches ( almost 75 centimeters ) -20% Height for Age

Head Circum : 17.7 inches ( 45.1 centimeters ) - 30% HC for Age

Weight for Length : 25 %

UpComing Appointments:

5/1 - Pediatrican for Both Kids ( Ear & Weight check for Mila, 4 y.o checkup for Robby ); Bloodwork for Mila ( CBC, Kidney Function, Liver function, Blood Clotting Tests ), also going to CALGARY!!!

5/5 - Small bowel follow through - to check for loops, damaged areas, psuedo or real obstructions, low motility, gastroparesis, and other motility issues.

Also this week : HHC Nurse ( Weekly Weigh In ) and the Coronary Angiogram ( yet to be scheduled )

5/16 - Gastric Emptying Scan - to check for delayed gastric emptying ( can cause vomiting, slow digestion, feeling full after just a small amount, or feeling full for a long time. )

5/21 Followup GI - to discuss PEG placement

5/26 Feeding Clinic - Weight, Height, Head Circum, with a nurse, dietician, SLP, and a social worker.

Tuesday, April 29, 2008

Playing with applesauce. She actually did get some in her mouth. On purpose!
Robby is such a great big brother. He allowed Mila to wear his new Spiderman float suit for the pool. She had a great time walking around it - I have more pictures of this for later :-)
Robby blowing out the #4 candle on his sunshine birthday cake. He took one bite and declared " Now I'm four! "

Sunday, April 27, 2008

Echo Update

Mila had an emergency echo a few days back after having some fits we thought might be chest pain. Thankfully, her echo showed that her heart has had some slight improvements. While the moderate mitral valve regurgitation hasn't improved in severity ( it is still moderate ) the opening inside the valve has shrunken slightly. The left ventricle (LV ) that was so damaged is showing some slight improvements in wall function, although the apex ( bottom ) is rocking back and forth instead of contracting properly. That area is is likely damaged permanently.

M's weight has been fluctuating as well, and we've seen a defined increase in vomiting lately, perhaps related to her recent runny nose. We tried small boluses ( 60 ml ) once an hour one day, and then we had to move her to a continuous drip overnight. The first night, we ran her feeding at 35 ml per hour over 10 hours - or we would have, had she not puked after a few hours. Last night, I switched things up and gave her 35 ml in about 10 minutes, and then gave her a break of 50 minutes. Luckily, our pump can do this interval feeding all on its own - I do not need to be awake for any of it, unless it alarms. Usually this only happens if it runs dry or if Mila kinks the line in her sleep.

Hopefully, being able to feed her at night will work well for her. Its very tough for her to sit for close to an hour, five times a day, for her daytime feeds. With this schedule, she gets the bulk of her calories overnight, and a few smaller bolus feeds during the day. This might also help with her eating skills, as she might not be so full all the time!!

Robby continues to grow and amaze me in new ways all the time. Today, he noticed the TV was dirty and did his best to wipe the dust off. He is enjoying his birthday gifts SO MUCH!!! The playdough is getting lots of use, the waterguns have found a home under his bed, along with the swim vest, and the transformer is carried from room to room, crashing and banging away. HOpefully later tonight I will have time to post the pictures that I've taken recently.

The weather is improving after the mid april freak snow storm, and Alex is getting ready to fly to NY for his foundry meeting clients thingy. I hope this years show is a good one - Alex is bringing a few good clients.

Also on the up and up - we're moving!!! Where? Why, apartment 232! Yes, we are moving down the hall. Our landlord - He Who Shall Not Be Named - called and said that there is a 3 br available, would we like it? Why yes, yes we would! Its actually PERFECT and in very good condition. The linoleum is in much better shape, the carpets ( although 80's shag ) are clean, and the living room is big enough to divide into grown up areas and children areas. The dining room is also much bigger, so we'll have enough room for all our crap. We are hoping to be able to move our washer and dryer over to the new place, basically just switching them around. I love our washer and dryer. Oh, and the stove! I refuse to move without my stove! The prospective move date is June 1. I leave shortly after that for Rachel's wedding.

Tuesday is M's GI appointment. Think well wishes our way that they can figure out what the issue is. Alex and I are having to very seriously discuss what to do about the NG tube. It is irritating the daylights out of M and we must think of her quality of life. While my preference is that she magically start eating one day very soon, the chances of that are slim. I do not know what kind of damage I am doing to her by holding her down to re-insert the tube. I can say that her face is raw where the tape is, she rubs her nose constantly, and she remembers that it was *I* who did this to her, and she resents me for it. The prospects of a surgically implanted G-tube have been mentioned several times - both by the feeding clinic and by the pediatrician - in a round about, be prepared in case he mentions it type of way.

And now... off to see if I can upload the pictures before Ms Thing Awakes.

Tuesday, April 22, 2008


Please do not follow any links in the comments. I am working to erase these comments, and I have turned the comments to moderated. If you comment, it may take a while to appear. Thanks!

Sneak Peak

I am working on this lovely corduroy quilt with handmade fabric yoyos ( also called suffolk puffs ). I am really, really enjoying it!

To My Baby

Robby -

Today you are turning four. FOUR! Four years of your life, I have held you, cuddled you, yelled at you, and watched you grow into an amazing person.

You were such a happy baby once I figured out how to feed you ( Answer : More food, more often. ) You've amazed me with your clarity of thought and word - I don't know many other four year olds who can talk out their ideas as well as you do. You've learned to entertain yourself. You've learned to spell your name, and you can recognize it. You eat only chicken nuggets, carrots, and pancakes. And tuna crackers, though I try to limit those to once or twice a week. You've started eating broccoli! BROCCOLI!

You can get dressed by yourself. You are getting better at brushing your own teeth. You can clean your room, organize the shoes. You help me unload the dishwasher, you can match socks for me, and you are great at bringing the laundry up the stairs.

You are a sweet big brother, and your sister loves you so much. Her little face lights up and she shrieks with happiness to see you each morning. She copies you. You remind the lady at the grocery store that Mila doesn't want a cookie, and then share yours when M changes her mind.

Robby, you are such a big boy, even if you are still my baby.

Saturday, April 19, 2008

Forgot this one!

Forecast Upgrade

The shirt that was almost.
How many pairs can YOU wear?

The new forecast calls for thirty inches of snow over four days.

Thirty Inches.

Just grumbling.

A week ago, we went to the park and hung out in the sunshine.

Today, I woke up to snow, grumbled, and check the forecast.

Then I grumbled much louder. I know... I really really do know that I chose to move to Canada. I even know that Canada's winter is longer than NJ's, and quite a bit longer than FL's. Oh wait, FL doesn't have winter. But please, please, it is mid april and we have a week full of appointments coming. For crying out loud, Robby's BIRTHDAY is in just three days. And the first day of spring was near to a MONTH ago!

So why, please, why why why, are we forecasted for 10 cm of snow today? The first of FOUR F**KING DAYS OF SNOW? I already wore out my winter boots. I have packed much of my winter clothes away. I have even broken out the shinier, summer shades of eyeshadow and lipstick, and BY GOLLY I was even going to highlight my hair into summerness. But noooooooooooooooooooooooooo, it has SNOW.

I am in an already grumpy mood, however. The super delish baby pants fit M great. So would the yummy baby cord in sumptuous aqua with a purple heart applique, that, for once, came out PERFECTLY on the first try?

Right up until the button hole function ATE the button hole. I don't know whether or not I can cut off enough and add a differant top casing for it to work, but I doubt M will be able to wear them today, which is kinda what I was planning on. And FORGET being able to wear the summer dresses & tops that I've been envisioning.

It's snowing again. Oh... and I discovered this morning that we are *this* close to being out of coffee!

Thursday, April 17, 2008

Sewing Pictures

Today's accomplishment : three pairs of pants - one with coordinating stripes down the side ( the legs are even, I just folded it a bit so you could see the stripe ), one with a bead & bow, and one with a tiny bit of lace edging. I am SO PROUD. ( The blue one needs the elastic shortened. )
Bow Detail - Ribbon with a small plastic bead in the middle. Both bead & bow are sewn on individually so that they cannot come off ( choking hazard ).
Edge of peachy pants with lace. YUMMY! This fabric was delish to work with - heavy knit jersey. The fabric ruffled a bit in the picture, but my topstitching on it is darn straight this time!!

Food Pictures ( Not that you care! )

More pictures ( Because the week was long! )

I am not grumpy... Just... interested in doing what I am doing. This expression is very common, and I find it cute. " Just what did you want from me now? "
I just love this picture of M. Especially since the tube is on the other side of her face. She wasn't much into the sand. The texture and graininess just did her right it - she wanted UP and she was willing to pull my pants right off in an attempt to get there.
This is one cute baby. One VERY VERY cute baby. You can see her cheeck is a bit red on the side opposite the tube - we are still having taping issues.
Look Mom! I *CAN* eat broccoli!

The week in pictures.

Mommy? I get to kick this ball ALL THE WAY TO THE PARK??? YAY! Bye mommy!

Wow, I'm on a swing. Not that I actually like it, but LOOK at me GO! At least I'm not crying in this picture. Can I get down now?

Taking the Step off for the firemans pole. I was so proud of you for this because you were really afraid. And after this first time, you did it 2938473497 more times because it was fun.

Holding Steady

Things are holding steady here at Casa De Kagan.

Mila yanked out her tube last night, and so she's been tubey free overnight. If she drinks 250 mls by 1pm ( just shy of two short feedings ), we may leave it out another day to lt her skin heal some more. I am a little... concerned... because I don't feel that she's using her words wisely - its rare to hear her say " Mama " any more, as well as " Up ". She will say up, though, with lots of coaching. " DaDa " can be heard on occasion too. I'm just not hearing it as often as I would like. I do not think it actually means anything, although its possible the NG is irrititating her throat & vocal cords. She took an entire bottle last night ( over nearly two hours ) and even took her meds ( with much gagging and fighting ).

And then she slept through the night!

Robby is driving me crazy. Always the bargaining!!! Five more minutes, one more, two more,I don't want to eat three bites, I only want to eat one, I won't eat unless I get dessert, for crying out loud GIVE ME MY CHOICES! This results in Mommy being very very exasperated with Robby. Thankfully, he has lots of moments where he snuggles with his sister, helps me unload the dishwasher, or eats all of his broccoli without too much reminding. Its why he's still breathing :-) ( Just kidding. I make it a point to not beat him often )

The weather was sooo darn beautiful here for two days - up near 60*!! I know in my heart that 60* isn't actually very warm, but I was sweaty from exertion just walking to the park after the pasty white winter. Both kids had a blast, and pictures are forthcoming.

New in the sewing world : I have 1/4 of a yard or less of some motorcycle print for Robby. I am considering appliquing it onto a Tshirt for him. I dream of pink and green tuti fruti dresses with white bias trim. A mommy sized shirt was cut from a pattern but hasn't yet been cut from fabric. I found six diaper shirts on sale, and bought them all, so while we have a plethora of shirts, pants are becoming hard to find and I will need to remedy this.

New in the cooking arena : Chicken curry for 5 - delicious and devoured by only 3. I never make enough rice, unless I make so much rice that half is wasted. Adding all the veggies ( except taters ) at the very end make it much tastier, but it sopped up all the sauce. I made cherry pie peekaboo muffins and Alex says they're yummy. Robby had egg in bread ( toad in the hole, one eyed sailor, egg in a basket, sunshine toast ) for the first time and ate every bite. YAY for am protein! Next on the menu - chicken pounded flat and rolled around proscuitto, then breaded and oven baked till crispy.

Upcoming dates : Passover seder at Sophias, GI, Feeding Team, Pediatrician, HHN, and most importantly, Robby's BIRTHDAY!

Thursday, April 10, 2008


Doing it the flylady way

There have been nights this past week that have been HORRIBLE.

M is waking up between two and four times a night. Robby is getting up once to pee. Alex is snoring away in my ear. We've had company like crazy and the house keeps turning into a disaster area. I refused to take pictures of M dancing to the wiggles ( actual butt shaking dancing ) because I couldn't get her in the picture without any of the toys or dirty laundry on the floor.

Robby had a friend over, and, I kid you not, they took out every single toy. Every one.

M has peed through her outfits twice now. I have baked a pie, and two sets of muffins, two full dinners for six to eight people, and three pans of cookies.

I am exhausted. I am up till 1 or later each night, plus the wakeups. I dread mornings where I trudge downstairs with M, tripping over toys, and attempting to load my coffee pot with a wiggly baby, over a sinkful of last nights dinner dishes. I do not have the wherewithall to attempt polite conversation, much less deal with a child who is absolutely sure that 7am is the new 10:00am.

But each morning ( well, most of them anyway ), I trudge downstairs and do not trip on anything. I hit the button on the loaded coffee pot, and drink from a cup from a clean dishwasher. Robby's juice is waiting in a cup in the fridge. M's diapers are set out. Everyone has clean clothes.

The mess in Robby's room? A lollipop bribe - and he's cleaned it himself in 15 minutes.

It is all because at night, I spend the last 15 minutes cleaning up. I hate it. I grumble and I grouch, but I do it because walking downstairs into a clean house is worth 15 minutes.

Alex has gotten on board with it, and so has Robby. Robby's clean room and his bed being made every morning is a source of pride for BOTH of us. Most of the time, Robby remembers to make his own bed. Occasionally, I yell downstairs to him to come and fix it for me. He puts his clothes in the " washer room " - not to be confused with WASH ROOM. The joy in my heart when Robby spends over an hour playing in his room, with toys he can both access and put back, is immeasurable.

Alex too! There have been nights where I have just NOT been up to loading the coffee pot - usually the nights when I fall asleep on the couch from utter exhaustion. We have a tiny pink and green sign that lets the morning shift know the coffee pot is loaded and ready. I love seeing it in the morning!!

Monday, April 7, 2008


Happy Birthday Uncle Aaron!!!!

From Mila & Robby
( And Alex & Sarah )

Sunday, April 6, 2008

This is what I woke up to yesterday.

Its depressing, no?

Trying to Catch Up

Its snowing again. I'm sure you can all understand how badly I hate this. I want the snow to stop, and its very very hard to want to do ANYTHING with it snowing. Especially with said snow in April.

Before I go any farther, I want to extend my deepest sympathies to my mother and her family, who have suffered a painful loss this week. On April 4, I learned that my great aunt Rose had passed at the Daughters Of Israel. While my memories of my aunt are mostly of a very old lady in a dark apartment, I know that that is not the whole of her. I well remember packages of clothes sent to us, including my long term favorite hunter green sweater with black blanket trim. It came with a pair of velvet pants that I adored. I was very very sad when the black trim came off that sweater, though, I kid you not, I am nearly 100% sure that I still have it. I recieved it for my birthday THIRTEEN YEARS AGO. Aunt Rose always made sure that what she sent would fit the whole year, if not longer.

Mila is tube free at the moment. After nap yesterday, I walked in to find her tube out of her nose and the tape nearly off of her face. We've left it out to trial her abilities to eat on her own.

Results :

Intake yesterday after removal - 210 of 440 mls

Intake today prior to reinsertion - 20 mls of 170

Total : - 230 of 610 mls ( 37%)


Enjoy the pictures.