We were in isolation with Molly after she was realised from over a month in the NICU at Children's Hospital. The doctors wanted her to gain weight and age before doing the surgery. I needed to make sure she wouldn't get sick by staying in the house at all times and monitoring who came in. They planned around five months old, but warned us that this isn't always true and to not assume anything. All I kept thinking to myself was "I didn't plan any of this happening so I wasn't going to start." Her doctors also wanted her to get monthly check ups on her heart and make sure nothing more was happening. So I left thinking, well I know she will be back here again so we'll make the best of it.
The whole time she was in isolation I was addicted to pictures, blogs, and people's experiences with their child's heart surgeries. I felt like I could never get enough. All I would see is these babies I have never met laying there with IV's coming out of their head, huge scars, tubes everywhere, and hooked to every machine known to man. It was odd, I just could never match Molly's face or names to any of the stories or pictures. I just wanted so badly to be prepared and reassured by the thought of someone breaking open my daughters rib cage and close up the holes in her heart. But as that sentence sounded you can never grasp the reality of whats going to happen.
A month goes by and Molly has her first cardiac appointment. I go in a little nervous, but keep reassuring myself that she should be OK. They do her EKG and ECO then have us wait in the room for the results. Our doctor comes in with a very un-confident look on her face. She tells us that the one hole looks the same, but that two more have formed and their were some smaller holes on the bottom of her heart. She was going to review it with the Children's Hospital Sergent's and call me when they wanted surgery done. My heart sank. I tried so hard not to cry in the office, but I knew the choking sounds were coming up from my throat. Once again bad news. I tried to not plan anything, but having the procedure at two and half months old and weighing five pounds was very scary and seemed unrealistic. We left and all I kept thinking is I wish that phone call would happen as soon as possible so I can try once again to prepare myself.
That night I slept horrible, I kept listening to every move and breath she made. I found myself going in her room and feeling her chest just to see if her heart was beating. Every time I would close my eyes the thought of her surgery would come up. I couldn't help to think with that many holes if she would even make it through the night. Why did it seem like my poor baby kept having all odds against her?
The next day I got the call from the cardiac doctor stating that Molly needed her surgery by next week. She let me know since Molly was premature and so little that her recovery in the hospital could be up to another month. When I hung up the phone I balled. I grabbed my sleeping baby and just thought was there no end to her pain? Will she ever know what it feels like not to be in the hospital or doctors office every month? It just wasn't fair. I never would have put this on my worst enemy and my daughter is having to endure all of this, and once again it was falling close to another holiday.
I first called my husband David (who was at work) and told him the news. I felt horrible that this was the way he needed to find out, but we had to give his boss the information fast. Being alone and dealing with this was terrible, but having to put emotions aside to do a good job at work must have been so much worse. He seemed to be very numb by the news and I was hoping he wasn't taking it as hard as me. I then called my sister to see if she could get the time off of work to be here since she lives in New York. They were very supportive and allowed for her to come. Which was great because I needed her here with me and not all the way across the United States. Then I called my mother and cried. I poured everything out thinking in some way if I told every detail it would make things easier. But no matter what came out I still felt the rock in my stomach. My last call ended with my best friend Kristin and thankfully her work was willing to give her the time off to be with me. Everything was set, I knew who would be there in the waiting room and the night before. Except the person I wanted to be their most was Molly, but of course reality needed to kick in and I needed to start excepting that.
The whole week was tense. When anyone would ask me if I was OK with everything I gave the response "I am glad their doing it now then waiting later," which was a lie. I wanted them to wait till later, I wanted to believe the holes would close on their own. But I didn't feel like explaining the details to others so kept with this response. While packing for the days ahead every piece of clothing was heavy, but I was determined to make sure we were better packed than before. It was just odd, the idea still was so abstract to me and I couldn't (or wasn't allowing myself) to grasp this surgery was going to happen.
My sister flew in a couple days before the surgery so she could see Molly and have cuddle time with her. Then like a flash it was the day before the surgery. My sister came up with David and I to have a tour of the CICU. I drove thinking it would take my focus off everything, but I was a ticking time bomb. My gas was getting low so my husband made a comment about how me or him should have gotten gas the day before, and I snapped. I yelled at him and got lost going into the pumping station and worst of all it was freezing cold that day. When I went outside to pump the gas I kept choking down tears. I remember how hot the tears were and how cold my face was. How I tried to hid it from my sister, husband, and the other people at the gas station. How I saw Molly in the back seat of the car and wondered if this was the last time I would see her like this, or even again. I pulled myself together and jumped back in the car. It seemed tense for the rest of the trip, but we ended up making it a little early and had the chance to put some McDonald's breakfast and ease tension. But no matter how much better I felt my breakfast burrito seemed to sit in my stomach the rest of the day.
We pulled up to Children's Hospital and went into the main lobby to meet the head nurse. I felt at home. I guess I never realised how comforted and attached to this building I had become. The colors, smell, and even noise was easing to me. The nurse came and got us and gave us the beginning of our five hour tour with no meal breaks. We toured all the rooms and floors. Then met with everyone doing Molly's surgery. First we met one of the Sergeant. He was very cocky and seemed un-phased by the whole situation. I asked him what was the death rate with this procedure was and outcome of a pace maker. He looked at me in the eyes and said "Three percent if that of death and same with the pace maker. Its never happened to me, but I have heard of those odds." I was thrilled he was so assured that there was not going to be a fatal outcome. He then told us that because Molly had such a low weight and small heart that he would have another Sergeant assistting. He also stated how lucky we were by this because that was unheard of. I was starting to feel more and more comfortable with everything. Then another nurse came in and did her speech. The last in the room was the anesthesiologist (who I enjoyed the most.) He was funny and just so kick back. He reminded me of the yuppies in Boulder and how he told us not to worry he would make sure to give Molly the good stuff. I felt slowly everything was seeming to be a little better. It was like peeling back the different layers of an onion, the closer down you get the less tears come out, and the ending in sight. We left the hospital and I felt more reassured, there was a great chance my daughter would come out of this fine.
Children's Hospital gives you a complimentary hotel suite to stay in so your close and rested for the day ahead of you. We found the hotel and it was very very nice. My mom, mom's boyfriend, and Kristin ended up meeting us there and stayed the night. It was so wonderful, the beds were comfy, there was tons of space, little kitchen, nice living room, and double king sized beds. The whole night we played games and enjoyed our time with Molly. Once everyone went to bed I was once again stuck with my thoughts. I tossed and turned all night. I kept watching the clock and counting down till five. When I got up for Molly's fluid feeding I held her and watched my little angel sleep. I rubbed her little sternum and took mental photos of her chest without a huge scar. I am not religious, but I did keep going over in my head, "Who ever is out there please listen to me and make sure my baby comes out healthier than before. Please she deserves this."
Five in the morning came all to soon. David and me packed Molly up and went on our way. It was so cold and dark. The drive to the hospital was only five minutes away, but seemed like hours to me. I just remember the only thing I was feeling was David's hand on mine. We went into the check in area and when we signed the papers to release the hospital to do whatever they needed to I tried not to cry. The head nurse grabbed us and and we headed up to the pre-operation room. They put Molly in a huge gown and my beautiful baby sat there and played totally unaware of the events to come. When she looked up at me and smiled I started balling. Trying to keep in as much as I could I just kept going poor thing doesn't even know whats going to happen to her. And I am allowing this, I am allowing this! Soon enough they came in and took Molly away. It was horrible! Once again I felt powerless, I am trusting these people with my daughters life and I am not able to be there with her. What if she cries? What if she is scared by so many strangers? What if she does end up being that three percent, I want to spend every moment with her I can. But unfortunately I knew I wasn't strong enough to sit through a surgery let alone knowing they would have never let me back. David and I came out to the waiting room to see everyone waiting for us. I just kept my head down and cried. How was it I felt so reassured yesterday to now wondering what I did? Kristin and mom took us down to the cafeteria to get something in our systems and just out of the area. I cried and told them what if something happens to my baby, how horrible giving her away felt, and what if I never see her again. They sat back and listened. It made me feel a little better being able to breath, talk, and be in a different area of the hospital. Kristin (who works in the medical field and has been present for a couple of open heart surgeries) was a life saver. She told me everything that was going to happen and how this is such a common thing that she knew everything would go fine. Every update the nurse would tell us got easier and easier, and Kristin would assure me by going "that's great to hear or sounds like its going smoothly." We got to a point where we were actually all smiling and laughing again.
When the doctor came out at the end he told us everything went better than expected and we could see her. Only two people were allowed back in the room so of course it was David and me. When we walked back I was in shock. Your never prepared to see your child after any kind of surgery, but this through me totally off. It was nothing like all the photos I saw before hand. She layed there so lifeless, unlike the twelve hours before. Her poor little body was white and she had a huge bloody white tape across her chest. There were wires coming out of her body and three specifically attached to her heart so I could not hold her, because if they bumped out of place at all it could kill her. I think the worse was the huge plastic looking bulb that was filling with blood and they would have to discard. Apparently her lungs were filling with blood and that was helping extract it out. She was also being monitored to make sure she wasn't going to have a stroke and make sure no nerve damage happened during the surgery. I became so sick to my stomach I ended up throwing up later. David and me couldn't grasp what she looked like let alone wanted anyone else to go back and see her looking like this. I didn't want to see her looking like this. The doctor and nurses came over and asked if David and me needed to step out for a little bit and get some air. I couldn't help, but say yes. I felt so guilty that I so selfishly couldn't be strong enough to sit by my daughters side. But I knew if I stayed in there I would have been a distraction for the other families and staff. My mom took David and I to Target just to get out of the hospital and have dinner. To be honest I remember very little of this because I was so focused on my feelings and what Molly looked like I couldn't think of anything else. She looked like death and I was scared what her ending out come would be. When we went back to our room, we both went over how we hoped tomorrow would be better.
Now its true what they say, the first day is the worst, but every day gets better (which I didn't believe). More and more tubes and machines were coming off of Molly. She even started moving more and being herself again. Her color came back in her face and I finally saw those rosie cheeks I loved. They pulled the NG tube out and she went back the bottle like nothing had ever happened. On the third day I got to hold her which was incredible. I got to feel my baby in my arms again and was allowed to change her diaper and parent her. She seemed stronger and stronger everyday and melted every ones hearts in the CICU. Every time I came in a nurse was holding her and taking her for rounds. On Valentines Day our nurses gave Molly a couple stuff animals with hearts. I even told David most parents give their kids candy hearts and we gave ours a repaired one. She even got to wear an outfit the last day there since so many wires came out. We were thrilled and shocked to hear that Molly was allowed to leave after six days in the CICU.
When Molly came home she did outstanding. We all felt there was an improvement on her and her strength ended up showing. Her scar almost totally healed after two weeks. Of course she was on oxygen a long time after, but it was better than what I thought her recovery would have been. It felt like no time at all we were able to be off of holding restrictions and have our little girl back.
Looking back now, and all the fear and tears I had were worth everything we got in return. I am glad that modern medicine is so advanced that this procedure went as smoothly as it did. Molly still has slight hyper tension in her heart, but all the holes are still repaired and no new ones have come through. She also is off of oxygen and currently getting ECO's and EKG's every four to six months. I am hoping this next visit it will turn to once a year and so on... When I now look at Molly's scar I don't see the surgery, I see a mark of beauty, courage, strength, and hope.
