Surgery

We are home now, it was a long journey but it had a good outcome. I took lots of pics and video but only posted a few, and I can't figure out how to post video, but I will warn you that it is really hard to look at these pictures and see Penelope hooked up too all the stuff. But I wanted to share our experience with all of our friends and family. We are so thankful for all of your support and love through this tough time. We couldn't have done it without you and the strength that you gave us. So here is the story of Penelope's Surgery....

Sunday we drove to Spokane, Washington. It was a long drive but we just took our time and arrived that evening. The hospital was kind enough to pay for our room for the first 3 nights ( as long as penny was there) so we came up a little early to get some quiet family time and rest before all the hustle bustle. Monday morning we slept in and lounged around the hotel room. We did venture out for a quick lunch and to get a general idea of where things were.

Tuesday was a big day. We had lots of appointments and it started really early in the morning. We started by meeting with the surgeon. They checked Penny out and made sure everything was looking good. Then he took the time to show us diagrams and drawing of exactly what he was going to repair and how. He took the time to explain the entire procedure from start to finish. It was great. He did a really good job and I felt very confident in his ability and skills. Next we headed over to the hospital for pre-screening. Here they got us registered and ready for the big day. They started by getting weight and length of Penelope. Then we she had to get a couple of chest x-rays, nose swabs, blood draw ( they did this in the arm instead of the heal like they usually do-ouch), vitals, then they got her hospital bands put on and she was all good to go. Of course this was the hospital so what could have taken like 1 hour took 3. It was a long wait and Penny was getting really tired and cranky. Next stop was the cardiologist office. Here they checked her from head to toe. Making sure she didn't have any infections, rashes, or anything that might make surgery difficult. She passed the test. They reviewed the procedure with us again and gave us the approval to go ahead with surgery. This cardiologist was in the room while they did surgery giving his opinion and guidance.

Wednesday morning we arrived at the hospital at 5:30 am. They weighed penny again and got her vitals. Then more waiting. Soon the anesthesiologist came in and answered questions and explained what he was going to do, we met with the surgeon again, and the nurse that was going to be assisting. I wrapped Penelope in a nice warm blanket and said goodbye as I placed her in the arms of the nurse. The nurse (Minna) was really nice and assured us she would take good care of our little girl. It was sure hard to see her walk down the hall with her.

All of us ( James, me, and both sets of grandparents) then just had to wait. It was a long hard wait. They were really good in the operating room and called us multiple times to keep us updated on the progress. They took her at 7:15 and it took them over an hour to get her asleep and put all the iv's in and monitors hooked up. Then they called us and told us they were starting, they called us when she was hooked up to the bypass machine, and when she was off the machine, and when they were closing. It was nice to know everything but every time that phone rang I got scared. I didn't expect them to call that much but I did appreciate it.

Afterwards the surgeon came in and told us how everything went he said they were moving her to the pediatric intensive care unit (PICU) and we could go see her in 1/2 hour. When we made it up there the nurses weren't ready yet and made us wait another 1 1/2 hours. It was torture. Finally we were allowed to go see her. It was very very hard to see her hooked up to the ventilator and still sedated. Her eyes were open however she wasn't really there. But the look in her eyes pierced me straight through. She was looking at me like " what have you done to me?". She looked miserable and like she had been put through the ringer. The nurse was nice and put a pink bow in her hair. That helped a little. The rest of that day and the following day she mostly just laid there. If she moved to much, it indicated she was starting to wake up so they gave her more drugs. They didn't want her to wake up with that tube down her throat. It was hard to leave, but there wasn't room to sleep in there so we had to go, but I came back first thing in the morning. These next two pictures show her sedated and hooked up to everything. She had 3 different iv's ( hooked up to a total of 10 medicine drops), drainage tubes, breathing tubes, pacer wires and so much more as you can see.

On Friday they were able to remove the breathing machine. They slowly woke her up and made her prove that she could breath on her own and then they removed the tube from her throat. It helped to see her awake with a little more life in her eyes, but she wasn't very happy. Her throat was very sore and it made her voice very hoarse. Even when she cried. It was sad to hear. They gave her oxygen at this point to help ease the transition. She was doing great. They also removed her drainage tubes this same day. Which I am told helps get her out of pain since they aren't very comfortable. They said every time she breathed they would dig into her ribs. It was nice to have them gone.

At this point she is completely off the sedation medicine and only getting a drug similar to ibuprofen for pain. When she is awake she is fully aware we are there and will respond to our touch or our voice. If she felt really good she would start talking a little but she mostly just slept.

Once they were sure she was stable with her breathing and everything they were able to remove a couple of the iv's and some monitors. This allowed them to be able to dress her in a onesie and I finally got to hold my baby girl. It was awkward because she was still hooked up to some stuff but it was nice to have her in my arms. I tried to feed her but she didn't really want to so we just cuddled. James got to hold her later and of course she ate for him.I didn't really care who she ate for as long as she was eating. They took it slow at first, only fed her a little to see how her stomach would handle it, she was also on IV nutrition so it wasn't necessary to eat alot.

The next day she picked up her eating and was doing great. They were able to remove her pacer wires. This meant they were confident her heart was beating a steady rhythm. It was a good sign. Penelope was doing great.

Lacey and her family were able to come up and visit during the weekend. It was great to have them there. I was glad Penny was doing so well and they were able to see her awake, even Tylin. She was so excited to be able to go back in the room. :) She is a very sweet and caring little girl. She was very worried about Penny and so it was good for her to see Penny awake and dressed.
The nurses brought in a mobile for her crib which penny loved to watch and Tylin gave Penny a pink kitten. So her crib was all decked out and looking good. :)

On Sunday they moved us to the regular pediatric unit. This was after all the family had gone home and it was just me, James, and Penny. Of course this room was huge and even had a couch. Now that we didn't have any visitors. :) Once here they were able to remove her final IV. Now Penny was finally looking like a baby again. I spent the night in her room and neither of us got any sleep. The nurse kept coming in and waking us up. It was very annoying. Then at 5:00 am Monday morning they came in to draw her blood. Then the surgeon came in to check on her. Then they had to re-draw her blood for some reason. After that she had to get some more x-rays and an echo cardiogram of her heart and a few more doctors came in to check on her. They just wouldn't leave her alone.

Finally after all of that they came in and said we could take her home today!!!! We were so excited. Only 5 days after open heart surgery she was going to be coming home with us. We were very impressed with how well she recovered and how great she was doing. We spent that night in Spokane and drove home to Boise on Tuesday. It was great to be home.

Penelope is doing awesome. She loves to eat now. She isn't exactly the same baby we had before but slowly I think we are getting back to her fun personality. She is no longer on pain meds but she is on a few other meds to help her heart for now. Hopefully soon we will be off those as well. We are so happy with everything and glad that it had a good outcome. We are glad we chose Spokane Children's Hospital. Our experience there was very positive and the entire staff was professional and considerate of our needs while we were there.

Thank you everyone for your prayers and thoughts. I know it is because of them that she is doing so well now.