Tag Archives: hospital

Going home?!

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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!

First surgery successful!

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After the longest day of our lives, her first surgery was a success. I believe it was a good 5-6 hours that she was in there and all went very well. She had what they call a Norwood with a Sano, which made her bottom chambers of her heart a single ventricle since her left side was still very narrow and could not pump on it’s own. They of course had told us they would be leaving her chest open for a few days just in case they needed to get back in for anything quickly and of course she had a breathing tube and was completely sedated.

Nothing ever prepares you for seeing your baby right after open heart surgery. So helpless and pale looking. Nor are you prepared for all the other wires and things that she was hooked up to on top of what she had to begin with. Once they had her settled back in her room we were allowed back finally and were able to ask a million questions about everything she was hooked up to. Those nurses are amazing with how they have to go through all of the cords and things to make sure everything is hooked up correctly to monitors. They each had their own way of “organizing” things too. We were both so overwhelmed by it all. They had 2-3 nurses in her room all night long monitoring everything, and I mean everything. At that young of an age, they have to calculate and recalculate everything depending on her numbers and how she looks. The pain meds, the paralytic, the oxygen, blood pressure meds, etc. She had drain tubes that came out of her chest under her dressing from the surgery to see how much blood drainage was coming out. Poor baby had a catheter to see how much she was peeing too. You truly get traumatized with seeing all of it. Such an innocent little thing having to go through all of this and she can’t tell you anything.

I stayed for a 2nd night to be with her while my husband went home to take care of our dogs and cats. Our son luckily was with our parents so he was happy and having fun. They keep the lights on all night as well in her room, so not much sleep for the 2nd night for me, but she did well over the night and they were happy with how everything looked. Her heart surgeon was very impressed at how strong she was and how well she handled the procedure. Finally, a bit of good news in the storm of uncertainties. If all went well, we’d be able to move up to the main floor in a couple weeks and have a couple weeks to recover before going home……at least that’s what we had hoped.