August 29^th had us in Ann Arbor at the children hospital by three in the afternoon. That place is enormous and is literally a city with the city. The hospital is all encompassing for all the comforts of both family and patients. I was shocked and enlightened by the friendliness of all the staff and their willingness to help us find our way, some even leading us to our destination point if needed.

 

Cora, like always, just took it all in as I pushed the stroller around the hospital and to our hotel room. We stayed at the Med Inn, which is located within the facility and this definitely helped ease the tension some. I was in the same building as Cora and this helped alleviate my stress level a great deal.

Got to the room and unpacked for the two week stay. Pediatric Cardiology family services had told me to prepare for a two week stay because children who have Down syndrome take longer to get off the ventilator, due to their lack of muscle tone, and it sometimes takes a longer healing process. Cora didn't know what was coming but I sure did. I was dreading it and knowing it had to be done all at the same time. Not an emotion I would wish on any parent.

 

The next day had us up at 6pm and Cora had been fasting from the midnight hour for the testing they would do on her. During the next eight hours Cora would be evaluated by the surgical team, have an echo-cardiogram, have x rays and blood-work. She was being sedated for the echo-cardiogram which was the reason for the fasting. After she had the echo she was able to feed and carry on throughout the day. After all the testing was done, Cora and I got to meet Dr. Bove and he went over every detail of the surgery with me and was very open to questions.

SIDENOTE: for those of you who are unfamiliar with how they x ray an infant – google “pig-o-stat” infant x ray. It is a horrible experience but I was constantly reassured it was painless and comfortable for Cora. I asked if they had sat in the equipment the same way as Cora was strapped in and I got a surprised look. Exactly! Until you can tell me that you have tested the machine you cannot tell me what it feels like for a child that cant speak up for herself. So if I am going to stand here and cry while my daughter cries deal with it, because I am not interfering with your testing at all. Thank you very much...... I think that was the only time I got a little snotty with folks. Sorry, just human, not superwoman.

During this whole experience I was never made to feel left out of the process or made to feel silly for any question that I asked. I even found myself repeating questions and then apologizing when I realized I had just asked that question a few minutes ago. The staff would politely laugh and tell me it happens to all the parents and that it is the stress of the situation. This somehow made me feel better.

 

August 31 came around and Cora was ready for her surgery. Problem was there was no bed in the PICU for Cora after her surgery. After three hours of waiting it was finally decided that Cora would be postponed for two more days until surgery took place. I was delighted that I got to have two more days with my daughter and disappointed all in the same breathe. I understood though and didn't want to put another child at risk by they being rushed out of the PICU before they were ready just to make room for Cora.

September 2 and this time there was no delay. Cora was evaluated and dressed for surgery. At 7:30am they took her from my arms and sent me to the waiting room. I felt like my breathe would never return. I felt like I had just handed my child over to never see her again. I didn't want this to happen! Bring her back! I didn't ask for this and neither did Cora! This is so unfair! All these thoughts were shooting through my mind and still I felt like there was no air in the room. Tears were freely flowing as I wondered if that would be the last time I held a smiling Cora in my arms. I went to the waiting room.

By 1p Doctor Bove, the surgeon, came to find me and tell me that the surgery was a success and that Cora was doing beautifully. I hugged the poor man and thanked him for helping Cora. I don't know if he gets many hugs because he seemed kind of surprised. But what do expect from a scared mother who just got great news?

I finally got to see Cora and was shocked, dismayed, lambasted, sideswiped, run-over by a truck, and any other phrases that might described that feeling at first seeing you child on a gurney with tubes coming out of every open space of her body. My eyes found the monitors and I read all her levels and stats and pressures and I was relieved. You learn a lot of things about those monitors and what they do and why they do it and you learn to understand why its important for you ton know these things. I remember the nurse gently teasing me about t knowing the monitors when I told her Cora's oxygen saturation had never been 100%. I think that was the first time I smiled that whole day.

 the nurses put a pink headband on Cora because it bothered me that everyone kept calling Cora a boy.

 

The next four days were spent in intensive care and just holding Cora's hand or reading my book while sitting next to her. She didn't have much awareness, and I understood that, but it made me feel better to be near her and to see her thriving more and more a each minute passed.

  

That first time I got to hold her after her surgery was amazing. Like giving birth and holding her again. I was so filled with joy and thankfulness at this little blessing and this little redheaded fighter that I grew teary eyed and couldn't stop smiling. I sat with her in a rocking chair and didn't move for fear of hurting her. Sat there for two hours just holding her and looking at her. Just enjoying the knowing of who this child was and how much she had already endured. Just looking.

 

I learned during her stay what :

• breathing sprints are
• steri-strips fall off in their own time
• wounds heal and become scars that need to stay out of sunlight for a year
• vibrators are used under the blanket to help the fluid move out of the infants lngs
• a small mallet with a cup on the end is used to move mucus out of the lungs by hitting the child on the back with it
• restraints are commonly used to keep an infant from pulling out the ventilator tube
• how to change a baby while on the ventilator
• how to bathe a baby with a serious chest wound
• love for  my child grows no matter how emotional I am feeling 

 On September 9, 2011 Cora was doing wonderful. She was able to nurse a whole 4 ounces from a bottle without stopping for a nap or sweating. She was full of energy and awake more than sleeping. She was a little spitfire and I was thankful she was coming home. There had been a little fear in my mind that I would not return with her if the surgery went bad, so this was a tremendous relief for me.

 

Cora did amazing and was recuperating well for the first week after her surgery and then things turned for the worse.

She starting to again have serious signs of heart failure.