48 Hours

After her 9 day run on ECMO we were told that we would wait 48 hours to see if her body could handle the lack of support and breathe with only the ventilator before they would consider doing her repair surgery. 

During the first few hours they weren't 100% thrilled with her stats, so they decided to switch her ventilator to a different kind of ventilator called an oscillator.  The traditional ventilator inflates and deflates the lungs in a way that mimics the human body, while the oscillator vibrates the lungs really quickly without allowing them to ever deflate.  It wasn't a major change and they were very casual about it, but we were still worried that this might be a sign that she may need to go back on ECMO.  ECMO is wonderful and it saved her life...but we still didn't want her to ever need it again!

Once the ventilator was switched out we spent the next two days just waiting to see what would happen.  Every time her blood pressure would drop near 40 or her CO2 would drop/rise, we worried; however, the nurses and the doctors just adjusted her medicine as needed and continued to monitor her business as usual. 

During her first 48 hours off ECMO Makenna also seemed more responsive.  I don't know if she was feeling better or if she was beginning to build a slight resistance to the sedation medicine she'd been getting since birth, but she was moving more and opening her eyes for longer stretches of time (10-15 mins at a time).  She started becoming a little bit more bothered by the tube down her throat and began sucking and gaging on it a lot.  She also seemed a little bit more aware of her surroundings, she would cry (without sound because the ventilator interferes with her vocal cords) and become visibly upset during hands-on time or when the environment got too noisy.  It broke my heart to see her so uncomfortable and not be able to hold or soothe her.  As much as parents hate hearing the baby cry and probably wish their baby came with a mute button, it is much worse when your baby physically can't cry but you can see the crying look on their face.  As much as I loved seeing her beautiful eyes open, I almost wished she would go back to peaceful sleep so she wouldn't have to feel any pain, fear, or discomfort.  Thankfully her nurses are all fabulous and do a really good job of keeping her as comfortable as possible. 

When we left the hospital on Sunday night we still weren't sure if she would have surgery the next morning.  That was especially hard.  Naturally you want to mentally prepare yourself for "the big day" and we couldn't really do that because we didn't really know when the big day would be.  We were hopeful that it would be Monday though!