Patrick had a follow-up appointment at the heart center this morning and they were pleased with how well he is doing post-op. He has gained weight (tipping the scales at 15 lbs 1 ounce) and his “zipper” is healing nicely. Patrick’s head was in the 40th percentile before surgery and despite the amount of blood that backs up in a baby’s head after the Glenn procedure, he is still only up to the 50th percentile for head size. That means he only has “Glenn head” minimally.
Patrick’s cousin, Jeremiah, is settled at Primary Children’s Medical Center. His lungs are stronger than they had initially thought and they have been talking about ECMO (a machine that will put oxygen in his blood) and surgery today. From what I have heard, they have had some ups and downs, but Jeremiah continues to fight and to surpass expectations. Thanks everyone for your prayers for him. Be strong baby J, we love you!
It was so nice to get away for a few days and have tons of family to distract or encourage us, depending on the moment. Thanks go out to my Mom & Dad for all of their efforts for our family reunion and to our other family members who planned activities and special occasions so that we could be there.
I mentioned a 17-month-old girl with Ebstein’s in a previous post–we have since heard from her family, the Lowry’s. Although they are from Prescott, AZ, we were actually able to meet up with them while we were in Utah this past weekend. It was awesome to meet them and to see their cute little girl running around and happy in spite of her first surgery (primarily a valve repair, I believe) on June 10th. They were hoping that additional procedures/surgeries will not be needed, but based on her follow-up visit it sounds like she might need the Glenn procedure as well. We are definitely hoping for the best for them!
The Lowry’s are pretty much great all around. They took time away from their family festivities to talk with us. It was nice to get a better idea of what to expect, particularly everyday things we will need to do for our son. Mostly, though, we appreciated the meet-up because it’s good to remember that we are not the only ones that this has happened to. It’s amazing to have such a support network, including the Lowry’s and other “heart families” who we will probably meet and/or interact with through hospital visits and the Eller Heart Family Council.
Things we have learned from the Lowry’s include:
Heart babies tend to have a difficult time putting on weight because their little hearts are working so hard. I will likely need to add formula to breast-milk (if we want him to have breast-milk, which we do) and bottle-feed in order to keep track of Pedro’s caloric intake.
When Pedro comes home with us, he will probably have a monitor that alerts us if his oxygen level drops. For the Lowry’s this usually happened during the night when the monitor got kicked off or their baby relaxed and her ox naturally dropped. We weren’t planning to get any sleep anyway, though, right? (I say “we”, but who am I kidding? We all know that Braden has slept through louder things.)
Some heart babies take Viagra in order to help their blood flow
The Mayo Clinic a youtube video about Ebstein’s Anomaly: