February is gone and into March we go. Slowly talking of 2nd heart surgery but the surgeon really wanted to wait for her to gain more weight and get closer to 5 or 6 months old before doing it. We agreed naturally because that would make her that much stronger for the procedure.

Next was talk of rehab in between before the second surgery, which meant transferring to another hospital for that! I’d finally had enough and asked if it was truly necessary. I felt comfortable enough by this point with giving meds, doing her feeds and working with her developmentally. I just wanted my baby home, even if for only a short while before the next surgery. Amazingly they listened! They started looking at her as going home and prepping us for what would be needed. This all included getting us home care support, oxygen, feeding supplies and nurses to come check in on her. I got trained on her feeding pump even though I had watched the nurses do it a million times. Oxygen supplies were delivered to our house and I was shown all that was needed for that. Feeding supplies were also all delivered for us.

Finally by the end of March we were ready to go home! We brought our son with us that day, did not tell anyone we were coming home and even though it was an extremely long day waiting for discharge and getting prescriptions, we were going home after 4 months in the hospital. We surprised the grandparents by skyping once we were home. They were in shock lol, but it was the best feeling!

It truly helps to speak up. You are your child’s voice and advocate. If you speak up, the doctors will listen, even if it takes a while. It’s even better when you have the nurses on your side that help voice your opinions too. Our nurses were amazing both in the PICU and recovery floor. They helped have my back on the idea of going home with her. In the beginning I was so unsure of myself and if we were making the best decisions for her, but the longer we were there, the more I watched and listened to the nurses and doctors, I became more comfortable with speaking up. Our sweet girl in her going home outfit, not what I had originally pictured for bringing her home since it had been 4 months and normally you get to go home after just a few days. But at least she was getting to wear one of her many adorable outfits FINALLY!