I know it's been forever since I've written about Zoe, but sometimes life gets in the way. The three of us have had some busy weeks. Zoe is doing amazing right now, she is a moving machine. Crawling, standing, sitting, riding on her car, cruising- you name it she can now do it. Unfortunately, this sometimes gets us into trouble. Last week, when I turned my back for two seconds, Zoe managed to walk around the couch a bit farther than usual and her central line tubing got wrapped around the couch leg and got pulled a bit- it looked worse than it actually was. I immediatlety paniced becase the line measured like it had pulled out of her chest 2 centimeters and it also had a bit of a nick in the line but wasn't leaking. After a few calls to the cardiologist and a visit to the pediatrician, it was decided that she should go into the hospital to have the nick in the line glued- the placement of the line in her chest was still fine. So we made a scheduled visit to the emergency room at Seattle Childrens on Wednesday morning where they slpiced her central line. To do this Zoe had to be inpatient for 24 hours, literally waiting for the glue to dry. She did great, better than Jason and I, the poor kid had two IV's, one in each foot so that her flolan could keep running, the central line can't be used while the glue is drying. She couldn't stand, walk, or crawl all the things she loves to do, so Jason did lots of snuggling with her while I did lots of hand sewing. I had an art show this past weekend that I was frantically trying to finish. Thursday AM, I headed down to Tacome to set up for the RAGS Wearable Art Show while Jason finished getting Zoe discharged and took her home. Jason took care of Zoe all weekend while I was at the show- he did great and Zoe kept him super busy- Reading "Baby Beluga" 12 times in a row and chasing her around the house. They both survibed of course and I missed Zoe terribly, it was very odd to not be around her for 4 days excpet for an hour at night and in the morning- now I know how Jason feels. Anyways, I think we are all recovered from that now and back to life as normal.
Zoe has had several doctor appointments in the past few weeks. Her neurodevelopmental check up went great, they were incredibly impressed with what she can do- the last time they saw her she was about 11 months old. She also had an ECHO a few weeks ago. It went great. Her lung pressures are about the same, maybe a bit lower, but what is really exciting is how well the blood is now flowing in her heart. Zoe has always had 2 holes in her heart and a shunt right outside her heart (PDA). The ASD (smallest hole in her heart) couldn't even be seen hardly at all, which hopefully means it is healing itself and since the pressures in her heart are lessening the blood is no longer shunting through that hole. She also has a moderate sized ASD between the upper chambers of her heart. That hole is still there but what is really exciting is that the blood is now only shunting right to left, not both ways. This means that they can potentially think about closing up that hole which should help reduce her pulmonary hypertension since the oxygenated blood would no longer be able to shunt to the wrong side of her heart. The PDA that is directly above her heart is still there, and that is actually benifical to Zoe because if Zoe's lung pressures get to high and blood has to shunt somehwere, it would be able to do so outside of the heart, which would make her heart not have to work so hard. Her heart still looks great, it is a bit enlarged on the right side, but no more so than it has been all along. Zoe has a yearly cardiac cath scheduled for MAy where they will definitvley be able to check allher pressures and look at the ASD and VSD to decide what to do next. We will also hopefully at that time be able to take her off about 4 meds, which would be great.
In terms of eating, Zoe is now able to tolerate 180 mls (6 ounces) at each feed, this is huge becasue it has enbabled us to go from 9 feeds a day every 90 minuted ot 6 feeds a day every 3 hours- this adds a lot of time to the day and makes getting out much easier and enjoyable. Her vomiting and reflux has decreased vastly, she now will have several days a time with no vomit. She is still not eating much orally, but every now and them will put some crackers or pretzels in her mouth. She also will drink some occasional water. She has been able to spend some time with her cousins and some younf family friends lately and being around them and watching them eat is very encouraging to her. AS soon as respiratory virus season is over in May, we will hopefully be getting Zoe into some plat groups and eating groups through her OT provider. Hopefully, no that her reflux is getting better, we can start getting somewhere on her oral feeding.
Zoe and I have been loving the mild winter/spring around here, we've been getting out for long walks every nice day we can, I'm not sure who loves it more, Zoe or me! Nothing like a beautiful springy, sunny day in the Pacific Northwest.
Hope this gets everybody up to date, I'm sure I'm forgetting something, and I'll try and update more than once every two months
Zoe helping Papa with some yard work
Zoe with her first pigtail hair do
Hanging out with best bud, Lily, on a gorgeous spring day in Seattle