One week at home

We have been home for one week now.  It seems like much longer in some ways, which could be good or bad!  Things are definitely continuing to be tiring without the fabulous nurses.  

For the first 3 1/2 days that we were home, I stayed on the pumping, fortifying, and bottle feeding regimen.  It was getting extremely tiring for us all.  I would have to pump while my husband or mom fed Ripley.  He would often cry very badly while waiting for the bottle to be warmed.  I instinctively knew he didn't need much extra help gaining weight because of his prior weight gain and his sister's weight gain patterns.  On Monday, he had his pediatrician appointment. Between Friday's discharge and the appointment, he went from 9 lbs, 7 oz to 9 lbs, 15 oz.  His pediatrician cleared me to breastfeed him for 6 feeds a day and give pumped fortified bottles for 2.  

Since he already had fortified bottles bottle the appointment, I decided to work on breastfeeding.  He thankfully took to it after a few minutes and I wanted to make sure that stuck so I didn't give him bottles the rest of the day.  This ended up coinciding with his six week growth spurt AND six week peak of fussiness.  On Monday night, he cluster fed a ton.  He would nurse, fall asleep for ten minutes, then wake up wanting to nurse again.  I was exhausted, but happy to be nursing him.  Because cluster feeding is a baby's way of signaling an increase in milk production, I consciously decided not to give him bottles anymore so that the nursing relationship would be fruitful. 

Other than that, he has gone back to being a newborn, but with additions of pain, gassiness, and constipation.  He is also still on Lasix to prevent any fluid buildup in his heart and lungs.  The past couple of days, he was unable to poop on his own so we had to give him glycerin suppositories and those unclogged him right away.  

This week, we've been so pleasantly surprised with packages and flowers from friends.  I also put out an ask for meals from my mothers' club's In a Pinch program and already FOUR moms have volunteered.  Often, it's hard to get any volunteers.  As I've mentioned, I have been so blessed with love from acquaintances, friends, our church, and strangers throughout this whole journey.  It's reminded me that there are still people who care out there!

Ripley had his first cardiology follow-up today.  He first remarked that Ripley has grown so much even between discharge and today..."what are you feeding him?"  He had no issues with Ripley exclusively breastfeeding.  Ripley had his oxygen saturation tested and it was at 97%.  He had an echocardiogram done.  His doctor said that things are looking good.  The pressure under his pulmonary valve is ~23 mmHg (down from ~70 mmHg before surgery!) and he considers anything under ~25 mmHg to be mild.  The valve is a little leaky, but he said that is to be expected for any TOF case and even for many heart healthy people.  His main goal was to check for effusions, which there were none of.  He also said that Ripley's scar is healing beautifully.  Ripley will continue to have Lasix for a few weeks to ensure he doesn't have effusions again.  I don't have a problem with this since he takes medication relatively easily.  He will have his next follow-up appointment in two weeks.