Not the best results...

Evynn has recovered from the heart catheterization, but has been admitted to SickKids again.  The catheterization showed her leaky valve has gone from moderate to severe.  This is causing the pressures in her lungs to be too high.  The doctors and surgeon have decided to discuss her case this coming Monday when the surgeons and other specialist consult about up coming surgeries.  They are expecting she will now have surgery this coming week instead of the end of November.  The leaky valve has to be repaired to bring the pressure down, before she can have the Glen stage surgery.  They will debate whether they think they can do this all at once or whether it needs to be two separate surgeries.  The hope is that her surgeon will be able to repair the valve and proceed with the Glen all at once.  For now, Evynn is stable and still smiling...

Heart Catheterization...

Evynn will be having her Heart Catheterization Test tomorrow at SickKidds.  They do this in preparation for the Glenn surgery.  The will check the structure of her heart, pressure in the chambers and oxygen level in the chambers and blood vessels.  It's done by putting a long thin tube into her heart through an artery or vein through the groin.  Like with any procedure it comes with risks... praying all goes well.

4 Months & finally 9lbs!

Although it's time consuming our new feeding system is packing on the pounds.  Evynn has finally reach 9lbs or 4.1kg, she still needs to get to 11lbs or 5kg before the next surgery but the way things are going, that shouldn't be a problem.

NG feeding running our lives...

Evynn has been discharged from SickKids with the NG tube.  She still has a cold but her symptoms & sats have improved.  We are now trying to manage the feeding routine which is beyond ridiculous.  The whole process of sterilizing, mixing, warming, oral feeding, ng tube top-up, sterilizing again and then pumping for the next feed takes 1 1/2 hrs.  This has to be done every 3 hrs around the clock.  Not sure where sleeping and other daily activities fit in there.

Evynn and her Mom are back at SickKids

Evynn has recently been re-admitted to Sick Kids. Due to her cold her weight gain has been compromised and the doctors have put her on a NG tube (nasogastric) for feeding.  Evynn is not impressed with this tube at all, in fact she is rather infuriated. While at Sick Kids she will undergo echo's (Echocardiogram) and they will monitor her NG tube intakes.

Evynn is also having X-rays taken to make sure her cold is not an infection. The X-rays will check for fluid in her lungs as well as around her heart. As weight gain is the major concern right now, when she is discharged Evynn will be going home with the NG tube until her weight is at a suitable level for her upcoming surgery.

Cold & Flu Season

Back to school for us, now means GERMS!  Evynn has her first cold which causes a lot of concern.  Her appetite has gone way down, so she has now lost essential weight, and because of the stuffy nose her saturation levels have decreased as well.  If the saturation levels go down any farther she will need to stay in the hospital on oxygen.  She avoiding that for now... but it's going to be a LONG cold & flu season.

Weight Problems

Yesterday was another long day at SickKids, but this time the cardiologist is happy with her saturation levels.  Echo results are good although the sedation is a nightmare ordeal.  The oral drug is torture for the babes.
We are increasing the concentrated feeds, because this past week she has only gained 25g, which is what she should be gainning in a day!  Evynn does not like taking her bootle from me, but will let her dolly feed her... so we do what we can.