Since she came home we have been to multiple follow-up appointments every week. I will give a run-down of everything.
Lily barely weighs 10lbs today. She left the hospital weighing 9lbs 8oz and in the 7th percentile. Now she is 10lbs 1oz and in the 2nd percentile. She has had trouble gaining weight since she left the hospital. This is not uncommon with CDH but when you add in the VSDs then she just has a double whammy. She was getting hindmilk with protein added but I was having trouble keeping up with the demand. She is now getting breast milk with protein and formula powder added in to hopefully help her gain.
Lily is now off of oxygen as of Thursday. She has an appointment with pulmonology next week so they can more closely monitor her lungs. This appointment was not made when she left the hospital but was a recent referral.
Lily tolerates feeds very well. She has reflux but rarely spits up or vomits as long as we make sure her zantac dose is correct. When the dietician added in the formula powder to her feeds she did have trouble with the particular brand they gave us. We have since found a brand (Target gentle) that she tolerates well.
This is our biggest area of concern right now. Lily has both a muscular and a membranous VSD. She has had two appointments so far with cardiology. Right now she is on lasix because she was starting to accumulate fluid in her lungs. This is common with larger VSDs (the membranous one is moderate in size). The blood is shunting from the left side of her heart to the right side. This is causing the right side of her heart to work harder and causing something similar to congestive heart failure. That is why she is accumulating fluid in her lungs. There has been no definite decision on whether or not it is going to require surgery to repair. The cardiologist is keeping a close eye on her and will make the decision on whether it needs to be repaired before she turns a year old. I really don't want my baby girl to have another major surgery so hopefully she won't need to.
Lily sees the neurosurgeon as well. On her post-ECMO MRI they found that she had ventriculomegally (the spaces in her brain that circulate cerebrospinal fluid are larger than they should be). The neurosurgeon is monitoring her head circumference to make sure she is not developing hydrocephalus. If her head circumference all of a sudden jumps percentiles and deviates from its current curve, then they will do an MRI. So far everything is stable there.
Lily had a babynet (early intervention program) evaluation the other day. She is not qualified to receive PT and OT through babynet because she is not considered developmentally delayed! She is on the low end of normal but I am thrilled that she is not delayed. The areas of concern were with her vocalizing and favoring turning her head to one side (thanks to ECMO). Yesterday she started "talking" more and actually laughed! I am going to get the pediatrician to refer us to MUSC PT/OT so I can at least get her some therapy.
When she is about a year old, she is going to have her ear tag removed by the plastic surgeon.
She is very social and loves to be talked to. She especially loves her big sister.
Her favorite things currently are her playmat (she loves to try to pull the bird off), chatting with mommy, smiling at her big sister and goofing off with her daddy.
Now for the fun part: pictures!
Last day in the hospital
And our family pictures done by my best friend Tish of Tish Hitesman photography (https://www.facebook.com/tishhitesmanphotography)