Home For Good, But For How Long?

With Lillian quickly back from her second hospital stay it was time to start getting on with our lives. Lillian was unperturbed by returning home, Annabelle was positively thrilled at the prospect of having her sister back. It is really amazing to see how much Annabelle loves her sister, always wanting to interact with her in some way, whether trying to tickle her or trying to get Lillian to do something.

Even with Lillian home, we still had to return to the hospital rather frequently for checkups to make sure that her heart was still functioning properly. The first of these appointments was on September 2nd, only a couple days after Lillian had been discharged again. This initial visit held discouraging news, Lillian had lost 4 ounces and her heart was swelling; a serious issue for anyone, but especially for a post open heart surgery infant. If the swelling was still up in a week, we would have to do a cardiac catheterization, a procedure where catheters are inserted into the major arteries that allows us a very good look at her heart, but the procedure isn't without risk. In the mean time, having the heart swelling meant more blood to the lungs rather than the body, which was the entire point of the first surgery. Regardless, all we could do at this point was wait.

I'm going to take a little detour at this point and do a brief overview of the medicines we were giving Lillian at the time, as I think its rather interesting myself and may be useful to others who find themselves in this situation later. From left to right: Captopril (1mg 3x daily) to help her heart, Lasix (.4mg 2x daily) a diuretic, a gas medicine (.3mg, as needed), Keppra (.5mg 2x daily) for seizure prevention, Naistatin (1mg ~4x daily) for the thrush, and some water to flush. Not pictured, asprin (1/4th pill, 20.25mg 1x daily) a pro-biotic (half a capsule 2x daily), topical naistatin, morphine (which she's off of now) and tylenol.

On September 9th, we got the news that Lillian's heart swelling had gone down, something Kathryn and I were thrilled to hear as it meant that she was not going to need the procedure just yet. Lillian also gained 6 ounces so solid progress overall. 

 At this point I'm going to switch modes a bit as September was relatively quiet by Lillian's standards. So, I'm just going to post a couple of cute pictures during the time period to recap instead. 

Annabelle's first photobomb

 On October 13th, we got some news from a doctor appointment that one of Lillian's heart valves was leaking and her general cardiac function was down, likely moving up the schedule to the next surgery. Lillian also had a mild arrhythmia, requiring a halter monitor to watch her heart function at home. The bad thing about this is the halter monitor has to be worn for 24 hours. The good part is that the mesh top they give you gives you the perfect costume for a European rave.

Ready to party

 Lillian was always happy to be home, and we were thrilled to have her there.