Ms. Zoe is not yet in the Cardiac Care Unit (CCU) or step down unit from the Cardiac Intensive Care Unit (CICU). She is physically ready to go, in fact she was de-intensified (no longer requiring intensive care) on the 17th, however, there was not a bed available. So, she will remain in the CICU for one more night.
When we arrived at the hospital this morning, we immediately noticed that Zoe was no longer on oxygen. They took her off the oxygen at 4:00 a.m., and her oxygen saturation levels were very good, even up until when we left at 10:00 p.m. tonight.
We were able to hold Zoe for a long time today. Stacey held her for almost three hours, I held her for another two hours, and Grandma Muenich held her about an hour and a half.
Really the only thing left for Zoe to improve on is her feedings. When she is bottle fed, she eats anywhere from 50% to 100% of what she is supposed to eat. What she doesn't finish from the bottle, she is given through her NG tube. In an HLHS baby, eating can be difficult for a variety of reasons, primarily because it takes energy to eat and these babies often tire easily because of their modified cardio-pulmonary system. Many kids are discharged from the hospital and sent home with an NG tube. We would like to avoid that. Everyone is now working to help Zoe build up the energy to finish her entire feedings, on a consistent basis, without the need for the NG tube. Once the NG tube comes out, Zoe will be close to discharge.
We learned today that part of the materials used to reconstruct Zoe's aorta were from donor tissue from an organ/tissue donor. Organ donation is often one of those things that you don't think about until you or a loved one need it. Stacey and I are both organ donors, but I've never had any real exposure to it. Frankly, I became an organ donor simply because it seemed like the right thing to do. We were given the information to write a thank you letter to the family of the donor who provided the tissue for Zoe's heart. We definitely plan to do that. The decision to donate, whether made by the donor or their family, was done in the hope of helping others in need. Most families, however, don't generally learn the outcome of the donated organs or tissue. If I were on the other side of this equation, I would like to learn the specific ways in which my loved one's donation saved others. Accordingly, we will send a letter, this week, to the family of the donor who provided the necessary tissue, thanking them for their contribution toward saving Zoe's heart and giving her a chance to live.
Tomorrow, Zoe should be transferred to the CCU and we will continue to work with Zoe, in conjunction with her nurses, to improve her feeding, taking us one step closer to returning to AZ.
8 Months Old!
5 years ago