At 5 weeks old she was considered to be in heart failure. That's a pretty scary thing when it comes to your baby, but all the doctors said she was doing great. She was started on Lasix and responded well. Over the course of the next several weeks her dosage was adjusted. She had a hard time gaining weight because her heart was working so hard. We used coconut oil to fortify the breast milk, in order to help her gain. Feeding her was a chore. She took a long time to eat her bottles at first. It wasn't until we changed to the level 2 nipples that she started taking more in.
Just before Kennedy turned 4 months old she was scheduled for a sedated echocardiogram. They wanted to have the best results to share with the surgeon. Dr. Nardell, our cardiologist, answered all of our questions. She felt confident that now was a good time to do the surgery, and that Kennedy would do well. She told us that we could push it until August if we wanted, but she recommended doing it before cold & flu season. As much as we never wanted to face that day, we also wanted it over with. Kennedy was definitely suffering from the effects of the heart failure. She was always sweating and she was breathing heavier when she was playing. I know that the surgery would make all the difference in the world. But that didn't make it any easier to face.
Kennedy preparing for her sedated echo.
On June 13th we met with Dr. Quintessenza, the cardiothoracic surgeon, who would be performing Kennedy's surgery, at All Children's Hospital. I was really impressed with him. He made me feel a little more at ease about the procedure. Or at least as much as I could, knowing that my baby would be having open heart surgery. She was scheduled for July 5th.
Because of the holiday they couldn't do the pre-op as an outpatient and we had to be admitted on July 4th. That was NOT how I wanted to spend Kennedy's first July Fourth. But we had to do what we had to do. We arrived around 3:30pm. I didn't anticipate just how hard all of the pre-op stuff would be. She had a general exam, and we met the ARNP, Cardiologist, and the hospital physician who were on staff for the week. Next came the chest x-ray. This was really hard because we had to hold her down. She screamed. I cried. This is how it went for the blood draw too. She was very hard to stick, and they ended up calling the IV team to start an IV so they didn't have to do it while she was dehydrated the next morning. Then they had to RE-DRAW the blood because it had clotted. It was a horrible afternoon, full of tears for both mommy and baby. Kennedy fell asleep early, and I just held her tight. I didn't want to let her go. I woke her up at 11pm, and gave her her last dose of Lasix and a bottle of milk. This was the last chance she had to eat before surgry. I was praying that she would sleep through the night, and not wake up hungry. I held her for hours. I didn't sleep at all that night. My mind was racing. I sat staring out the window at the fireworks going off in the distance. I couldn't believe that my baby was about to go into open heart surgery.
That morning our family joined us. They allowed everyone to come in and see Kennedy before surgery. She had slept all night and was still sleeping peacefully when everyone started to gather. She woke up when the OR Team came in and put the crib rail down. It was almost time to go to the OR. She was happy and smiling. It broke my heart. But in a way, it was good that she was completely unaware of what was about to happen. They escorted us out of the room, and down the hall. The OR Team pushing her in her crib, just steps ahead of us. My husband and I cried and cried. When we reached the hallway to the OR we gave her kisses. We rubbed her face. I held her hand. I tried hard not to show her how scared I was. She gave me one of her big gummy smiles while she kicked her feet about. As they turned down the hall with her, my husband and I both broke down in tears. Scared to death that would be the last time we would see her alive. I couldn't write or speak those words at the time, but now I can admit that's what I was worried about. It was 6:40am.
We were taken to a small room where we waited to meet with Dr. Q. It was the longest 45 minutes of my life. He finally came in and explained that she was under anesthesia and doing excellent, and that he was about to go in, and they would begin right around 8am. Jennifer, the OR Nurse who had escorted us, would be calling our cell phone every hour with an update. They told us it could take 4-6 hours total. Dr. Q said he hoped that the surgical part would be over in about 3 hours. We joined our family again. And we waited. And waited. We prayed. We paced the room. We received the first update at 9am. Kennedy was doing great and surgery was well under way. They had repaired one of the holes. With each update, the wait became a little easier. I blogged. I updated Facebook. I continued to pray. I have to admit, the wait during surgery wasn't as horrible as I expected. The constant updates, and knowing how well she was doing helped. The 10am update came in. Every thing was going just as expected. Kennedy was doing great. They hoped to be wrapping up around 11am, and they would get the bleeding under control and begin to reverse the anesthesia. I finally got the courage to run to the cafeteria and grab a snack and a water. By the time we got back it was almost time for the 11am update. 11am came and went. No call. I began to panic. What happened? Did something go wrong? Was there an emergency? My mom and husband tried to calm me down. But there was no calming me. I could tell my husband was worried too. He kept going out to the desk but we couldn't find anything out. 11:30 came and went. Still no update. I was freaking out. Finally my husband came back in from checking at the desk. He announced that she was out of surgery! And he even saw her getting wheeled back to the CVICU. Our prayers were answered. She made it through surgery.
Dr. Q met with us about 20 minutes later. He explained that the surgery was successful and that she did very well. He didn't anticipate that she would ever need another heart surgery. He said that she was still on the ventilator, but that her heart was functioning on its own. He explained that there was minimal blood loss, and she did not need a transfusion, but there was still a chance that she could. Since they put so much fluids into her, it dilutes the blood. He said that since I had donated blood, it would more than likely not exceed any transplant that she would need.
We waited for almost an hour before we could see her. I had prepared myself by looking at pictures of other babies who had the surgery. My mom had seen the pictures. My husband didn't want to. The best advice I can give to anyone, is to look at the pictures. I cried my eyes out for hours after I saw them. But I'm glad I did. It really prepared me for what I was going to see. In fact, I thought she looked better than I expected. As it turned out, they were able to extubate her in the OR, so she was no longer on the ventilator when we saw her. It was hard. It was really hard seeing my baby like that. But like I said. She looked better than I expected. My husband had a much harder time. He now tells me that looking back, he wishes he had looked at the pictures. The one thing that no one prepared me for was the fact that she was whimpering. Because her throat was so raw and dry, it sounded so pitiful. It was truly heart wrenching.
Kennedy would not sleep, so they did sedate her a little. She still only took cat naps. That really shocked me. She was even starting to move around and I was so scared that she would hurt herself. She pulled the nasal cannula for the oxygen out of her nose at 3 hours post op. The staff at ACH was great. For the first 24 hours out of surgery our nurses were assigned to only Kennedy. We essentially had someone with us all day and night. It was wonderful. They prepared us for the fact that we were likely in for a long night. We tried to rest during the day, but it was nearly impossible. Dr. Nardell called and said she had read many reports and spoken to many people and heard how wonderful Kennedy was doing.
That evening, Kennedy really started to wake up and show signs that she was hungry. I knew we would be in for a long night at this rate. She couldn't eat until the next day. They continued to sedate her, but nothing really helped. Her lips and mouth were so dry, and she was crying. She was truly starving. The nurse got her some bubble gum chap stick and put it on her lips. She ordered a few oral care kits, and let her suck the water off the sponges to wet her lips. After several hours of not sleeping, she finally asked the physician if we could give her some pedialyte at 4am. The answer was no. It was REALLY hard seeing my poor baby so hungry, and knowing it had been over 24 hours since she had anything, though there was nothing I could do. Our nurse was wonderful. She continued to let Kennedy suck the water off the sponges all night. Probably a lot more than she should have. Another nurse helped rock the bed. We got out all the toys we never imagined we would need less than 24 hours post-op. She finally fell asleep and we were all able to get a few hours of sleep.
That morning at rounds they said how great Kennedy was doing. They have already weaned her off the IV blood pressure medication and began reducing the sedative. We were also told that they would begin removing some of the access lines, monitors and the foley cath today. We would also wean her off the oxygen. They gave us the okay to give her Pedialyte. If she tolerated that well, she could have breast milk. She took 6.5 ounces of Pedialyte in no time. We're talking 20 minutes tops. She slept for a few hours, and Dr. Nardell came to visit. We talked about what a rock star Kennedy has been through all of this, and how they want her to be the poster child for the CVICU. After Kennedy woke up, she had a nice big bottle of milk. I instantly started to see my baby coming back to herself, little by little.
The arterial line was removed. As was the monitor to record her temperature. She was showing no signs of infection, and was being given 6 doses of antibiotics, just as precaution. The sedative was stopped completely by the end of the day. Her oxygen was turned down to the most minimal amount. She was only given two doses of morphine, and the pain was being managed with Toradol and Tylenol. She was pulling at her chest tube and all of the other wires and monitors. As the anesthesia continued to wear off, and she ate more, her bowels started to wake up. She was very gassy from the anesthesia. It was really hard, because we were not able to console her in the usual ways. We had not held her yet. She also had a lot of mucus in her lungs, which is not uncommon with surgery. However, she was having a hard time coughing it up. They said it's not uncommon in babies with Down syndrome, and because it's also painful for them to cough so soon after surgery. Each time she coughed, she would cry. It was really hard to see, but also so important in her recovery, so we encouraged her with each cough. They did have to suction her twice to help her get the mucus out. My husband and I left the room for that. It took her quite awhile to pee after they took out the foley cath. There was a bit of a concern that they may need to do a straight cath to help her pee. But our night nurse watched her closely and communicated with the doctor. They didn't want to do anything unnecessarily so they waited it out. She finally peed on her own! We were in for another long night. Kennedy did not sleep well, and we spent a large part of the night, once again, rocking the bed.
By day three we were really starting to see Kennedy's personality coming back. We were able to hold her for the first time! We even "sat her up" in the bed, for a change. Her chest tube was removed! She didn't eat as much that day, and I was nervous. They assured me that it was normal. Not much happened that day in terms of recovery, but it felt so good to be able to hold our baby girl again. Kennedy slept 10 hours straight that night. I think it had something to do with us being able to hold hr and comfort her again. We were able to get her dressed. In fact, we had to get her dressed because she was pulling at everything!
Day four came around. Kennedy's pacing wires were removed. People were already starting to talk about us going home soon. She was still having trouble getting the fluid out of her lungs, so they started her on another diuretic to help get it out. She had remained on the lowest dose of oxygen until the fluid was off her lungs. That day was my birthday and it felt so good just to be able to snuggle my baby all day. She was taken off all pain medication that day as well. There was an order to Tylenol to be given as needed. I was also finally able to get an order for Mylicon to help the gas. Two of the access lines had now been removed. They did an echo, which showed there was some mild leaking around the valve, which wasn't uncommon. Everything else was just as it should be a few days after surgery. That night the nurse practitioner came by and discussed us leaving on Sunday. She even made us get prescriptions filled. The one thing I had been warned about was getting our hopes up on leaving. But when they do things like that, they make it hard not to! She said hopefully Sunday, but if not, Monday or Tuesday at the absolute latest. We were just waiting for her lungs to clear up so we could get her off the oxygen. That night they tried to take her off the oxygen, but her sats dropped just below 90% so it had to go back on.
Day five came. Rounds came. No one could understand why her lungs didn't make much improvement. Then they realized she had been given oral diuretics instead of IV. This was a huge setback as far as time. She had received 3 doses - so 36 hours worth. It now had to be changed over to IV. I lost all hope of going home on Sunday, and began to hope for Monday. Kennedy was feeling better and better by the day and it was getting harder to entertain her. We were basically just in a holding pattern, so our room was moved to a different area of the CVICU. We even got to give Kennedy a bath that day.
Day 6 rounds came. I was hoping for encouraging news. Kennedy was doing AMAZING. This was such a small hurdle to overcome. I kept trying to remind myself that we were so lucky that this was all we were having to deal with. The good news, her lungs had cleared up really well! In just one dose of IV diuretic. The bad news. The night nurse never tried to wean her from the oxygen for more than five minutes. So we didn't know for sure how she would do. The doctor ordered that the oxygen come off. But the bomb came next. We would be there until the end of the week while they transitioned her back to oral meds. I had to send my husband to Toys R Us that day. We needed something else to try to entertain her. She had more energy than ever. She was also eating about 26-28 ounces a day. More than ever. I had to become a little more aggressive today, and I was able to get a swing for her. Her oxygen came off and her sats remained between 96-100%. Perfect.
By Monday, day 7, we were all hoping to go home by Tuesday. I was concerned about their "end of the week projection" and called and spoke with Dr. Nardell before rounds. She was in agreement that we shouldn't have been there that long. She put in some calls for me. She also told me to demand that they allow her to sleep through the night, that she did not need vitals done at night since she was not critical. Since she slept through the night at home, there was no reason that anyone should be waking her now. I also was able to convince them to put a hep lock on the central line. That way we could move her a little more freely. Not to mention, my husband and I felt more comfortable moving her around ourselves, with out it being attached to a machine. She was no longer receiving IV meds, and it was only there for blood draws. They began to transition her meds from IV to oral, and at a decreased dose. Both nurse practitioners approached me and told us their goal was to have us home Wednesday. Another echo was done, which showed improvement over the one from Friday, which was an excellent sign!
On Tuesday, one week post surgery, we got the good news that she was doing well with the transition from IV to oral Lasix. She would be going home on Lasix twice a day and Enalapril, a blood pressure medication, twice a day. They like to keep their blood pressure on the low end following surgery. Both meds would be weaned by Dr. Nardell over the 6-8 weeks following surgery. The plan was to go home on Wednesday! They also got us a portable monitor and allowed us to move Kennedy around the room. I folded out the bed, and we laid her on there to play and nap. Of course, she did a lot more playing than napping. It's amazing how different she is. Everyone was right, you never knew how sick they were until after surgery.
On Wednesday, 1 week and 1 day post-op, we were given the all clear to go home. Kennedy had never been so happy to get in her car seat and see her pink elephant in her life!
On July 24th we had our two week follow up with Dr. Nardell. A repeat echo showed that there was even less leakage around the valve. Her Lasix was decreased to once a day for two weeks, and then will be stopped completely. We return in one month, and her blood pressure medication will then be weaned. Kennedy gained a full pound since we left the hospital only 9 days before. She has more energy than ever. She's eating 30+ ounces of breast milk per day and has been started on solids.
I will continue to update this as we have our follow up appointments. I will also be adding a packing list, and helpful information for those having surgery at All Children's Hospital.