Slowly Hailey started to slide downhill a little. We never saw major signs of heart failure. Her breathing did start to become more labored. Her feedings were the biggest issue. It would sometimes take up to an hour to complete each feeding and that was only 3 oz (if we could get that much in her). Finally in May, our cardiologist decided it was time to schedule surgery. Hailey's VSD was not improving so there was no reason to prolong any longer. A few days later we were given our surgery date. That is when my worrying started in full force. I spent the next few weeks reading as many blogs as I could find about other children who had undergone an open heart surgery. I also searched for as many post-op photos as I could find. Jason didn't think it was a good idea but I really wanted to be prepared. I wanted to be able to walk into Hailey's room and look straight into her eyes and not be overwhelmed by everything else attached to her. Fortunately, I was able to find a ton of blogs of other OHS. Apparently, we all have a lot to say! I am very thankful for them. It did help me in the end. They all said the same thing, "The anticipation and waiting is worse than actual surgery and post op". That to me seemed absurd.
The following weeks seemed to fly by. We scheduled Hailey's baptism before surgery. Even with the high success rate, my heart was racing and I was petrified of something going wrong. Surgery was scheduled for a Tuesday. We had an appointment with the surgeon the Friday before and then pre-op was Monday. The appointment with the surgeon was what I expected. He was very business like/no nonsense. That is exactly what I wanted. I didn't need a Patrick Dempsey to be her surgeon. Pre-op actually was worse on me than the surgical appointment. Everything was uneventful but I lost it when the nurse practitioner gave us the layout of the next day. I don't think I made it past "then you will hand your daughter to the staff outside of the operating room". I wanted to hyperventilate. Lastly we met with the anesthesiologist. I know they have to give you all the things that "might go wrong" but I think I mentally checked out because I couldn't deal with all of them. I couldn't let me mind go there anymore than it already had.
We were at the hospital so incredibly early. Her surgery was scheduled for 7:30 a.m. Most of it went quickly and painlessly. We had about 45 minutes where we were able to just hang out with Hailey. My goodness that girl was in a good mood. She was smiling and jabbering up a storm! It almost made it harder.
We were able to let all our family come in and give more kisses and hugs before surgery. Before we knew it, our time was up and we were told "it's time". We walked down the hall. I thought we would have to hand her over at the double doors outside of all of the operating rooms but I was wrong. We actually walked to her operating room. Outside there were two anesthesiologists and two nurses. I couldn't do it. I gave her as many kisses as I could trying to fight back as many tears as possible. Dad did the same and then we had to let go. One of the nurses walked us back to the waiting room. Before he left us he said, "We will treat her like she is our own". I believed him.
Luckily we were able to get a private room to wait in. I don't think I could have waited out with everyone. My mind was racing about everything and nothing all at once. They told us that it would be 45 minutes to an hour before our first update. The first phone call would be that all the IVs are in place, she is prepped and ready to go. We waited. I tried surfing the net, reading, chatting with friends and family. Nothing worked. I couldn't focus on anything. It seemed to take forever...it took longer than forever. I was so worried that something was wrong. It was an hour and half before we got that phone call. Hailey's veins are so very small and they had difficulty getting her central line in. The first phone call was that the surgeon was in and was working on her repair. I couldn't take it. I couldn't get the image out of my head. I had to leave and get away. Jason and I disappeared for awhile so I could have my breakdown with just the two of us. We went back to the waiting room and chit chatted. I actually was a little better after my big cry. I started then to get antsy again. I felt like I needed to be moving or something. I walked through the halls of the hospital and ended in the chapel. I prayed for a long time. I actually fell asleep in a chair in the chapel when I received a text from Jason to head back upstairs. Not much more time passed and the nurse practitioner came in to tell us the surgery was over. Hailey did fabulous. Her VSD was a little larger than anticipated but it was patched and the ASDs were stitched. The staff was preparing her to move into CICU and the surgeon would be out soon to speak with us. About 20 minutes later, he appeared and recapped what the nurse practitioner had said. The cloud had lifted. Our baby's heart was fixed! Now the healing begins and she can go on living her life!
I am so glad I prepared myself for what we were going to see when we visited Hailey. I was expected all the wires, monitors, tubes, etc. She just looked so tiny in that giant bed. I think the only thing I wasn't expecting was how long it would take her to come out of anesthesia. She didn't come to until sometime the following morning. That night was hard. We would sit in her room and take turns sleeping in her room and the sleep room they provided us. The noises, the waiting...it is hard. You just want to take away all her pain. You want to heal her faster.
Hailey was a rock star through it all. She moved through that process faster than I ever thought she would have. I will admit that I didn't write down enough through the process. I never seemed to remember what medication she was on or what her latest bp was. I trusted her doctors and nurses 100%. I did go through rounds every day. I wish someone would have forewarned me how overwhelming rounds could be. With Cincinnati Children's being a teaching hospital, rounds are almost like a small army. As an exhausted parent with a child recovering from a major operation, all those white coats with laptops and extensive vocabularies can be quite intimidating. Fortunately, the director of the CICU has a wonderful bedside manner and translated everything for me! By rounds the first morning, Hailey had her ventilator removed and she was breathing on her own. Shortly after they removed her catheter. They were concerned at first with the amount of drainage coming from her chest tube and were considering another blood transfusion. I was uncomfortable with another transfusion. When her tube was draining the most, you could look at Hailey in her bed with both arms over her head and her knees were pulled up to her chest. It was easy to see that because she was so active, it was draining more. When they called for more blood, they didn't have what they needed for Hailey so they decided to wait a little longer. Sure enough, once Hailey stopped being a gymnast, the drainage slowed to almost nothing.
Day 2, Wednesday, was rather uneventful. We spent our hours talking to Hailey, telling her we loved her, resting in the family lounge and thanking God for our miracle. I felt very comfortable while Hailey was in ICU. I knew she was getting the absolute best care and if anything happened, they would reach us immediately. We decided to go home together and have dinner with the boys. It was nice to have some normal but I ached to be at the hospital with Hailey. Jason stayed the night with the boys and I stayed with Hailey. I definitely didn't sleep that night. The recliners are awful. I really think I could have slept better on the floor. We waited all day to hear the results of Hailey's echo and never did. I was "sleeping" in the recliner and heard a noise. I jumped up and startled the director of the unit. The poor doctor thought I was sound asleep. I asked about the results of her echo and he seemed annoyed that no one had told us. He told me that the echo showed exactly what they wanted. Hailey's blood was flowing the direction it was meant to flow. It was fixed. I started crying. The doctor put his hand on my shoulder and said, "Mom, are you okay?" My response, "You don't understand, this all started with an echo. Now, you are saying everything is ok after another echo". At that point, we were playing the waiting game. It was just waiting for all Hailey's labs to come back good and wean her off of everything.
I'm not sure what happened or do I know how I feel about it yet.
Don't worry...everything is going to be okay!
Day 3 - Jason came back the next morning. Rounds were good. They said Hailey would transition into a different room that afternoon. We had to wait until she had a bottle and an xray of her chest. That first bottle was absolutely crazy. We fed her 3 oz because that is what she ate prior to surgery. She ate it faster than she has ever taken a bottle ever. I knew feeding would get easier but I never in a million years thought we would see something so soon. Hailey moved into her own room that afternoon. It was weird seeing her in a crib again. She didn't look quite so small! Her big brothers came to visit her before they headed out of town. She was happy to see them and vice versa. The child life department made books for the boys that told what happened to Hailey and where she was. We all had dinner in the cafeteria then it was time for the boys to leave. Dad decided to stay at the hospital and I went home with the boys. I was wiped and was looking forward to sleep in a bed!
Dad, I'm moving into my own room!
Finally, my mommy is holding me again!
My big brothers are here to make sure I'm okay.
Day 4 - I received a text from Jason about 6:45 a.m. asking me to call him. I was not prepared for what I heard on the other end. They were sending Hailey home! I was in disbelief. I was so scared. I didn't think they should send her home so quickly. It was only Friday and her surgery was Tuesday. It seemed crazy to me! She went home on Tylenol and ibuprofen. We alternated every 4 hours for the next two days and then only gave it as needed.
I'm going home!
That was 53 days ago. Hailey is thriving. It is surreal to think that my child had open heart surgery. You would never know if you didn't see that thin pink scar running down her chest. I thank God every day for saving Hailey and giving us more time with her. She is such a blessing!