(Written March 2001)
Hi everyone. My name is Melissa and I am married to a wonderful man named Mark. I am 20 years old, and Mark is 22. We have two beautiful and precious baby girls. Sierra is 2. She was born July 24th, 1998 weighing 7 lbs. 5 oz and was 20 ½ inches long. She wasn't due until August 1st, but due to high blood pressure, she was forced to come a little earlier. I was induced on July 23rd, and she arrived at 1:23 p.m. the next day. She has red hair and is at this stage of her life that she just constantly makes you laugh. We found out Sierra was going to be a big sister on Valentine's Day 2000. We were absolutely thrilled to know that we were having another baby. I wanted another girl so bad. Mark wanted a boy, but never would admit to it. We had the
ultrasound done in June and the technician could only see 3 of the heart chambers. She wasn't too concerned about it, and told us it was probably just the way the baby was laying. We found out the "it" was a her and we were so happy. We never thought about the ultrasound again. Until a few months later. My blood pressure went up again during the eighth month of my pregnancy, so my OB had me come in for a non-stress test on September 25th. My blood pressure was high, but not nearly as high as with Sierra. None the less, she told me to come back in at 5:00 that evening and "we'll get this baby here." I was stunned. I hadn't even packed my bags! I still had 3 and a half more weeks to go! (my due date was October 19th). I went home, packed my bags, and cleaned the house from top to bottom for the baby we'd be bringing home soon. Katy was born September 26th, 2000 at 2:54 p.m. She was 6 pounds, 10 ounces and 20 inches long. She was so beautiful. Pink, healthy cry,everything. She stayed with us for about 45 minutes to an hour and then they took her to get her cleaned up. We still hadn't pickled out a middle name for her. I wanted it to be Courtney (my mother's maiden name), but Faith had been mentioned earlier in the
pregnancy, and that's what Mark wanted. So it was at this time that she became "Katelynn Faith." We had no idea how much that name would come to mean to us in just a few short days. A couple of hours later, the nurse came in and told us that they believed she had a murmur. They told us not to worry and that it was
probably just an "innocent" murmur; lots of babies are born with them. We were concerned, but not overly worried. There wasn't any history of heart problems in our families, so we didn't really think too much about it. We didn't see her to much that night. Only about 15 minutes when they brought her in to let Sierra meet her new baby sister. Then they took her again. The next morning, every time we tried to go to the nursery and see her, they had her back in the other room running tests. It was not until we saw this that we started to become really scared that it was something more serious. But a little while later, her pediatrician came in and told us that they didn't think the
murmur was anything to worry about. Only 1 in 1500 babies has a murmur, which actually turns out to be anything serious. So we relaxed a little. Than a couple of hours later, he called and talked to Mark. He told him they now believed that it was more than just an innocent murmur. Right after they hung up and Mark
told me what he'd said, the cardiologist walked in. he told us that Katelynn had been diagnosed with Truncus Arteriosus, a very rare and complex heart defect. We were in shock and disbelief. How could our perfect baby have something wrong with her that we couldn't even pronounce??!! He told us her prognosis wasn't good
and that he was transferring her to Riley Hospital within the next couple of hours. We called our family and told them the news, crying our eyes out the entire time. Luckily they got there in time to meet her. Then the transport team got there, put her on the vent, and took her, leaving us with only a picture they'd taken. My blood pressure was still pretty high, so my OB told me to lay down and rest,and if it went down, she'd discharge me. It went down, so I got discharged and we were close behind on the way to Riley. The next few days were without a doubt the hardest and most tiring days of our lives. I was of course having the postpartum hormones times 50 and couldn't even listen to a doctor explain something without bawling my eyes out the entire time. But they all kept their patience with us and explained her condition over and over until we finally started to understand it. The cardiologist at Riley also discovered that Katelynn had an Interrupted Aortic Arch, a condition that sometimes goes along with Truncus Arteriosus. It is a very rare condition that only worsens the disease. It had been said that the doctors hoped to send her home and let her grow a little before surgery, but when this was discovered, surgery was scheduled for the following Tuesday. Katelynn would be one week old. Over the next couple of
days, it was a constant battle to get an ounce down Katy. With the IAA, it was extremely difficult for her to be able to eat just a tiny amount. Her sats would drop and her respirations would go way up. We met with the surgeon on Monday, the day
before surgery. It was then that he told us (about 5 times) that Katy was not going to make it. He told us that he wished he could give us some encouragement, but he honestly did not feel she would pull through. The day of surgery was the longest day of our lives. She was having open and closed heart both that day. The open heart was to put a homograph in and create a
pulmonary valve since hers was only a stump, and the closed heart was to repair the arch. She went back at 7:45 a.m. The day was an emotional roller coaster for all of us (we had a lot of family there with us). One hour, they'd come out and tell us she was stable, then the next hour, she wasn't going to make it. They told us that it all depended on what her valve did when they took her off bypass. At 3:00, the nurse came out and told us that her valve was way to big and there was nothing they could do to save her. We all joined hands, cried, and prayed. I have never prayed so hard in my life. It was more than praying, it was almost like begging. It's really hard to explain. At 4:30, the nurse came back out and told us they didn't know how or why, but her valve had shrunk and she had made it. (Hmmm…I wonder how that happened?) They also told us that her valve was still leaking more than what they felt comfortable with, but she could survive with it leaking as long as it didn't get any worse. Katy came through her surgery with flying colors and went home 3 weeks later. At her 4-week check-up, they found her arch was blocked again. They did a balloon angioplasty on December 1st, and she went home on December 3rd. We were home
for 9 days, and on December 12th, My hubby and I's 2nd anniversary, Katelynn had an appointment with her cardiologist. They did an echo and found that her valve was leaking worse than after surgery. He told me she needed to go back to Riley, so we headed back up there that night. We learned within the next couple of days how bad of shape her heart was in. The valve was leaking so badly and had caused so much blood to back up into her left ventricle that her heart was 2 ½ times the size it was supposed to be. 2 days later, on December 14th, they placed her on the transplant list. She was the only baby in Indiana with her blood type, so they believed her chances of getting one were pretty good. While we waited for a heart to become available, they started her on Milrinone to help her heart contract better. After a couple of weeks, and no offers had come in, they ran a list to check for antigens in her blood. The results came back as 12%. Not bad, but not the greatest. They were hoping they'd be 0%. We waited another week, and still no offers. They ran the same test again, and this time the antigens were up to 17%. We were running out of time and options. Her heart function was down to 20-25%. It was then that they put her on a pretty big dose of Dobutamine. It was a Wednesday and her surgeon told us if there was any improvement in her heart function by Friday, they'd do the valve replacement on Monday or Tuesday. He told us that he didn't want to do the surgery with the shaper her heart was in because he thought her heart would become "stunned" after surgery and wouldn't know what to do. It wouldn't remember how to contract or do anything it should be doing.When they did the echo that Friday, the function was a tad better and surgery was scheduled for scheduled for that Monday. On Sunday, the surgeon came in and told us that he had an emergency surgery he had to do. He said that if he got out of surgery by 2:00 in the morning, he would do Katy's the next day. He called us at 9:00 that night and said he knew there was no way he'd be out by 2:00. So, surgery was postponed till Tuesday. He later told us that he didn't get out of surgery until 6:00 in the morning.
That Tuesday, Katy's surgery lasted for over 14 hours. The nurse had pretty good news all day, but around 5:00 that evening she came out and told us that Katelynn was going to have to go on ECMO. Even though we had a pretty good idea that she would have to go on it, it still broke our hearts. To have those kind of numbers for her survival rate (30-40%) staring us in the face was almost to much to handle. When the support nurse left at 5:00 that evening, she told us that someone would be out to talk to us within the hour. We didn't see anyone for 3 ½ hours. I was near a state of panic. Everyone was gone, so there was no one we could ask to check on her for us. Finally, we found a janitor and she went back and got the charge nurse. He came out and told us that Katelynn was doing pretty well, except she was having some internal bleeding that they were trying to get under control. Mark and I didn't get to see Katy that night. We had Sierra and we had been up since 4:00 that morning and it was already 1:00 a.m. by the time she came out of the OR. We finally had to leave and put Sierra to bed. My mom stayed at the hospital and finally got to see her around 3:00 in the morning. When we saw Katelynn the next morning, she looked worse than we'd imagined. She wasn't really swollen, which surprised us, but her chest was open and she was bleeding heavily from the incision. The nurses told us that was normal when they are on ECMO because all of the ECMO circuit wires are coated in Heparin and it makes them bleed heavily. It was awful though because they couldn't paralyze her while she was on the circuit, so she was squirming everywhere and making it bleed worse. I told her that this was not the time to start trying to turn over! Katy came off of ECMO that Friday without a hitch. They closed her chest the next Tuesday, and she came off the ventilator about a week later. Everything went great. All of her head ultrasounds came back looking great, (A lot of times kids have bleeding in their brains while on ECMO), her kidney's were working wonderfully…I remember telling the cardiologist that I was kind of scared because things seemed to be going to well. That brings us to now…I should've kept my mouth shut. I wish I had an ending for this story…or at least that hospital stay. But I don't. Since surgery, Katelynn's heart function has stayed around 30-35%. Enough to get her into an inactive position on the transplant list. She's been having some major feeding problems and had at one point gone form 9 pounds 4 ounces, to 7 lbs. 8 oz within a week. She has now started to gain some of that back and is up to about 8 ½ lbs. They thought she had Rotavirus and RSV, but when both of those tests came back negative, they realized she has Pneumonia. It'll be 3 months on March 12th that she's been at the hospital and it's starting to get a little old. We love our nurses and everyone is so good to Katy, so I feel very fortunate in that aspect. But it's hard to hear them say things like "her feeding issues are on the back burner right now" when you know that's going to be the biggest battle and the only thing that stands in between her and coming home is a bottle!!! Katelynn's heart function is now up to 35%, which the doctor's are very pleased about. She is also now just starting to take a bottle again…and keep it down! She is almost up to 9 pounds again, and is over 25 inches long! (At least she's growing in length!) I just want to get her home and let her be a normal baby. Her whole life has been tubes, needles, and pain. I want to let her roll around, smile, and be happy. But I also want her to feel good and be able to have a halfway normal life. I know the only way to do that is to not take her home until she's 100% ready to go home. I really appreciate you letting me tell Katy's story. It is a tremendous help to get this out and talk about it. Sierra and Katy are the lights of our lives, and we want them to always know how much we love them. I hope we can be the kind of parents they need us to be. Melissa Copyright(c)2001-Melissa
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