Wednesday, May 19, 2010

We don't need your stinking oxygen & thanks for the tissue.

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.


  1. She's so perfect-so precious. Thank you so much for the updates. I'm an organ donor as well; the "tissue" part never occurred to me. How very cool of you for reaching out to the family with a "thank you." Give that sweet little girl a kiss on the forehead for us G&K folks in the IT Department, as we continue to send her (and her parents) our love and energy.

  2. Stacey, we've been keeping up on your blog and are so happy things are going well. We think of you often and you are always in our prayers. Hope you can bring the family home soon. Adam and Christine

  3. I love this blog! Now I can check in whenever I want to find out how you all are doing. Zoe is just the sweetest baby in the world. She's beautiful even with that ugly tubing coming out of her nose. You are in my thoughts and requests to the universe. I miss you and can't wait to see you back safe in Arizona.

    Much love XXOO

  4. So wonderful to see the photos of each of you holding your precious Zoe! She is so beautiful! Stacey, you look great for just having a baby (let alone the stress)!! i will keep checking the blog for updates, but let me know if I can do anything to help!

    Barbara ("BG")

  5. such a strong little lady! :) We can all take a humbling lesson with this little one... what a doll. I can't wait to kiss that cheek and introduce her to Kaydee! We love all you guys, give Emmy hugs and kisses for us. :)

    Chris and Chels