At 10:30am this morning, Dr. John and his surgical staff were able to successfully close Zoe's chest. This is a big step to getting Zoe home, so of course when I first saw her I was overwhelmed with emotion. I am feeling joy and relief for her healing and progress... but also a deep sadness for her suffering.
After spending some time by her side, I took a walk to think and pull myself together. I went to the bathroom in the family lounge and just sat there sobbing. I need some time to grieve. Clearly, Zoe is one of God's many miracles. She has a fight in her that is inspiring! But seeing your tiny baby in such a fragile state is something I never imagined experiencing. It is beyond painful. The tubes, wires, blood and even her open chest really didn't bother me. It is seeing her sewn up that breaks my heart. Don't get me wrong, I am overjoyed that she is moving forward in the recovery process but it is really tough to see my perfect newborn with such a large scar that she will carry with her, her whole life. I feel guilty that it even bothers me, because in the big scheme of things- it is just a scar and she is a survivor. I just know that as a girl and a woman, that scar won't always be easy for her to see. That scar will be a constant reminder that life isn't going to be easy for her and I can't do much about it be love her and do my best to get her through it. I hope I can help her to embrace her battle wound and heart condition. I hope I can help her to know that she is a very special daughter of God and that she is beautiful and nothing less than perfect to Him, myself and Andrew.
Tomorrow will be a day of slowly waking her up by reducing pain medication and eliminating the paralytic. She will also have the large chest tube on her right side taken out.
I also had a good cry session at her bedside, while holding her hand. I have spent the last 5 days holding her right hand (because the left is where one of her IV's is placed), gently rubbing her soft head and tiny feet. Although I am extremely grateful to even be able to touch her, I want so badly to hold her, hear those coos and whimpers that I so quickly fell in love with in the 48 hours we shared together and finally, to see her eyes looking back at me. She was so swollen before her surgery that she couldn't open her eyes, so I still haven't seen them yet. We have so much to learn about each other and I am getting impatient. I am so blessed to have her here each day and need to focus on that instead of getting down on what I don't have.
Dr. King (cardiologist) thinks that she will be extubated in the next few days. Once that breathing tube and several other tiny lines are out, we will finally be able to hold her. I am crossing my fingers that she will be in my arms by the end of this week! After the breathing tube is taken out, they will continue to slowly remove more and more tubes and IV's.
Towards the end of my 5 hour visit for the day, Dr. King came in to do an ultrasound. He said that her heart was looking great and nothing was of concern to him. He did say that her Common Valve is leaking a little bit, but that is fairly normal after surgery. The Common Valve is the Atrial Septal Defect that was found a couple months after the Hypoplastic Left Heart Syndrome was discovered. Prior to surgery, Dr. King and Dr. John let us know that if when in surgery, they saw the Common Valve leaking a great deal- there would be no form of repair, which would be fatal. Of course, we were terrified for this possibility, but they assured us after surgery that it was not an issue. Phew!
Along with family, friends have been a support system that we could not survive without. Not only did we get lots of visitors, flowers, phone calls and Facebook messages of love and support, we have had so many acts of kindness come our way.
Just a few recent examples... our friends the Salisbury's came up to the hospital on Saturday night and snagged Andrew to go pick up dinner and bring it back for a little in-patient date night. It was so nice of them to buy us dinner and best of all, make us laugh all night.
My dear friend Erin brought me california rolls, diet coke and celebrity gossip magazines. She also brought Andrew energy drinks, which he couldn't have survived without!
When I got home from the hospital tonight, I found this cute arrangement of daffodils and case of DC on my doorstep from my friend Christy. Today is Christy's birthday, and because she is just that fabulous... she brought me a gift on her special day! Now that's a saint!
I also checked my e-mail today and was surprised to find a video from one of my favorite people, Andre Rouge. Andre and I have been besties since the day we met in a BYU student ward about 5 years ago. We have been through a lot together and even from Guatemala, he is still here for me. Love you Andre!