Second Cardiology Follow-up

Ripley had his second cardiology follow-up today, 37 days post-surgery.  This means he has lived more of his life after surgery than before surgery!

His cardiologist says things are looking good with Ripley's heart.  The pressure under his pulmonary valve remains around 25 mmHg (like last time, he said anything under 30 mmHg is considered mild).  The branches of his pulmonary arteries are developing well.  There is very mild leakage of the pulmonary valve.  No shunting is taking place so the VSD and the PFO are completely closed.  There continue to be no more effusions and this means he can be taken off of the diuretic, Lasix (Furosemide)!  Now he will just be taking iron supplements and Vitamin D.

The one thing that makes me sad is that his growth is continuing, but it's stopped the huge spurt that it had before.  Last Tuesday (October 4), I met for the second time with a lactation consultant about how to deal with overactive letdown.  Two LCs had said that I really have done everything they could think of and then I was sent home to use a nipple shield.  The first one, a Medela shield, didn't work too well.  I used Amazon Prime same day shipping and got one from Lansinoh that worked much better for Ripley.  I'd say by now that only 10% of his feeding sessions are accompanied by fits due to being overwhelmed by flow, as opposed to 90% before the shield.  I worry that this has contributed to his not gaining as rapidly as he did before.  Before the nipple shield, he was gaining over 30 grams per day and now he's hovering around 20 grams per day.  A normal newborn should be gaining between 20-30 grams per day so it's still normal though.  I was just hoping he could still get bigger because he shot up to 40th percentile before surgery and now has stayed between 20th to 23rd percentile.  

I also hope that we will be able to wean him off the nipple shield easily.  Some babies get used to it and don't want to nurse without the aide.  My goal is that he will be able to handle the flow without the shield and then we can have regular nursing.  That will make getting out and about so much easier.  Many babies are said to start handling overactive letdown better around 12 weeks because milk supply is regulated and babies are more able to handle it with age/size.

Anyways, back to cardiology.  Ripley's cardiologist is hopeful that he could have a "good" case and not need anymore intervention, thus effectively being like a VSD patient.  The two scenarios that would require surgical intervention would be if the pulmonary valve needs replacement or if the infundibular tissue (under the pulmonary valve) grows thick again and needs to be shaved down.  For the former scenario, if it occurred, Ripley would likely be school age or even a teenager.  By then, the technology would probably be advanced that his pulmonary valve could be replaced through a catheterization procedure, instead of open heart surgery.  For the latter, however, actually removing built up tissue would require open heart surgery.  I pray that Ripley won't need either though.  

So for now, Ripley is back to being treated mostly like a newborn.  He can start getting real baths again and soon we can start holding him like a regular baby (not having to worry about bothering the sternum and can hold him under the armpits).  I plan to give him infant massages soon too, which his sister liked, and applying Vitamin E oil to the scar so it heals well.  Having a newborn is not easy, especially one who doesn't want to sleep alone and is still only regularly giving me 2 hour stretches between feeds.  Still, I feel blessed that things are getting slightly more manageable.  When Madison starts preschool in one month, things will hopefully get easier and we will all get more rest.  We are drowning a little with taking care of a newborn, toddler, getting things done, and cooking, even with help of the family.  Just a few more weeks...