And We Are Home!

  A day short of 8 weeks, we brought Lyla home from her long recovery of heart surgery. We are relieved that the doctors feel she is well enough to be at home and that we don't have to split our time between kids and each other! But we were also sent home with some new equipment, medicines, and concerns.
   Lyla was sent home on oxygen. She is on 1L and we feel comfortable with the equipment but wonder how long she will need it for. She is now going to be followed by a pulmonary doctor. Her lungs are a new concern and still have not completely cleared from all that went on at the hospital.
   We need to be followed up with Ears, Nose, Throat doctor to check on her vocal cord that damaged during intubation.
   We will continue to meet with GI and figure out what's best in how to feed Lyla and other GI concerns. GJ Tube is still an option for Lyla and could be more realistic if she is not gaining weight and continuing to spit up.
   Lyla is on two drugs that we will be in charge of weening; methadone and Ativan. We will do this one at a time and start with methadone. So far it's going ok, but it may be more difficult once we cut it down to once a day and smaller volume.
   Her feeds were set at 25 while in the hospital, but the dietician told us once we got home we could go as low as 20ml/hr. since she was having more spit up at 25 we decided to go down to 20ml and slowly work up. She has still been spitting up but not nearly as much. It is tricky with Lyla because it's hard to tell how much the spitting up is related to withdraw, how much it's related to upping her feeds, or how much it's just normal baby spit up! She is still on the special formula with low fats and will be for another week or two.
   She is taking 5 different medicines: Ativan, methadone, lasix, Pepcid, and ibuprofen. Multivitamin and vitamin D. Albuteral inhaler and QVAR inhaler. This means Lyla is getting something every three hours. Which means no sleep!
   On top of doctor appointments, we will be starting physical and speech therapy with Lyla. I am excited for these to begin and hope we can make up for lost time. Lyla has very low muscle tone, which means hardly any head control and her body is so floppy when holding her. Speech therapy will help her to eventually get to eating orally.

   She will also see an ophthalmologist in May and hopefully get some answers about her eyes.
   Overall things are going good at home. We've jumped right in to a routine and have her meds and feeding routine down. The kids are happy that Lyla is home and excited that mom is home all day too!

Will post some pictures later!