Yesterday Isabelle had her cardiology clinic visit. It was a pretty good visit – we had an ECHO and an EKG done. Isabelle was not the most settled but overall she handled everything very well. We also got some great news. The ECHO is an ultrasound of the heart to see the structure of the heart. They checked if Izzy still had a PFO and PDA, the two little holes that were in her heart. Both defects are “insignificant”. The EKG analyzes the electrical activity of the heart. Isabelle’s heart tested normally. Finally before we left the hospital, the doctors were concerned about Isabelle’s lungs being over inflated, so they also checked her lungs and they are no longer over inflated. The doctor confidently said that Izzy has a normal heart and normal lungs. Although we were pretty sure that this would be the case it was still great to hear it. We will now have one more clinic visit before Isabelle’s surgery so that they know exactly how her heart and lungs are working.
In other news, Isabelle has started having one big regurgitation incident a day. I’m not sure if this is because she still fighting gastro or if she has reflux. Reflux is pretty common amongst babies with omphaloceles. Addison used to also have a few big spit up incidents as well so I am not too concerned, but because Izzy still doesn’t eat too well I’m worried that she is not getting enough to eat. I am going to need to keep an eye on this and maybe she needs some medication.
Finally, Isabelle also doesn’t like being put down. She actually really hates it. She also doesn’t like to nap. The only thing she likes is bouncing on the exercise ball. So to try to get some stuff done at home I had Mark make me a ring sling. Unfortunately we haven’t had much success. The first time I tried to put her in it, she fell out the bottom. Don’t worry I have great reflexes. Remember the “catch the ruler” reflex test? Izzy didn’t even fall more than 6″. Then the second time, I was able to get Izzy nice and snug in the sling, but I think that having the sling so tight put too much pressure on her omphalocele. I can feel it digging into my chest. In fact I think that the increased pressure made her throw up. Yup she threw up all over the two of us while we were securely tied together. Fun times! So for now until we figure this out I guess I will just bounce on the exercise ball for 6 hours a day and catch up on HBO. My Fitbit is logging every bounce as a step so it looks like I’m walking up a storm.
With gong gong gone this weekend we have been relying on our own little family. This has been the first time since a couple of weeks before Izzy was born. It has been tough but also empowering and enlightening to know we can do it. Every night when I look at my little family my heart is filled to bursting. Love these guys so much.