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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.
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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.
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! "
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!!
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!
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?


