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.

Struggles...

Evynn is causing a bit of concern, after being taken off of her lasix (which removes fluid around her heart), she saturation levels are down.  We had to spend a day having an unplanned x-ray, echo & blood work.  Her cardiologist has now got her back on the lasix, but that has caused her to loose 8oz in one week.  She has now fallen off the bottom growth chart.  The surgeons want her to be at least 11lbs before her next surgery in 2 months.  With the way things are going... that will be a struggle.

3 months

Evynn is almost three months old and loves to be held. She is watched closely by her cardiologists at Sickkids, through monthly Echos, ECGs and blood test.  Evynn will have a Heart Catheterization Test done in October.  The cardiologist puts a long thin tube through an artery from her groin to her heart.  Then they x-ray her heart while they send dye through it.  This is to prepare for the next surgery, the Glen, which will be done sometime in November.

Gaining Weight

Evynn has finally reached her birth weight.  Although she feeds well, her weight gain is slow.  We are now fortifying her feeds with formula to add extra calories.  Evynn now weighs 3.24Kg and her cardiologist wants her to be at least 5Kg before her next surgery.
Evynn has been enrolled in a 5th study.  This one is a long term data collection study for the Congenital Heart Surgeons' Society.  I've added a link to their website.

One month post surgery...

It's been just over a month since Evynn had her Norwood surgery.  I would like to thank everyone for all your thoughts and prayers along the way.  I have posted links to videos that explain & show the Norwood surgery.  The second surgery will be some time in the next 3 - 5 months.  I will continue to keep you all updated.  Please feel free to comment or ask questions here.

Belly buttons...

Evynn and the family are adjusting to being at home with Evynn's condition.  An amusing part of her recovery is the button the surgeon sewed to Evynn's belly so he wouldn't loose the stitches into her skin.
Yesterday, Evynn was back to SickKids to have her picc line removed.  Doctors' are pleased with her ability to nurse, which can be a challenge for babies with HLHS.

Evynn is HOME!

Evynn was discharged from Sick Kids on Saturday and is now at home with her family!