Marley in the Hospital: Day Two

On day 2, Marley has begun to wake up more. She is now tolerating fluids and even pooping. Her neurosurgeon is very pleased so far by her recovery and is confident that we should be able to go home on Saturday.

While still in the PICU, one of the rounding doctors noted that Marley has a heart murmur. She advised that she have an EKG and echocardiagram (ultrasound of the heart) done to rule out any heart issues. When Marley was in the hospital after her febrile seizure, an attending also noted a heart murmur and when we asked our pediatrician about it, he basically blew it off.

Once Marley was transferred to a regular unit, the echocardiagram was performed and two cardiologists came in to discuss the results. They diagnosed Marley with stenosis of her left pulmonary artery and stenosis of her aorta. Both conditions are relatively mild but she does need cardiac catherization within the next few months to open up her pulmonary artery and she will need open heart surgery when she is a little older to fix her aorta. Before she is discharged from the hospital on Saturday she will need a chest xray and lung scan to see if she has any lung damage.

Jason and I are a mess. We have been caught totally off-guard by this new condition. Our goal with her tethered cord repair was to be able to cross off one of her issues from her list- not create more problems. We also thought this was the only surgery she would ever need. We both feel like we've received a quick blow to the chest- we are devastated.

I don't really know where to go from here. I cry. A lot. I just feel so discouraged and angry and tired. I am SO tired. I could sleep for days. All I want right now is to be able to pick Marley up and hold her and I can't even do that. I just want to bring her home.