Adelaide

leaving the CTICU for the step down unit (6 west)

going home!!!!!

Addie was born perfectly healthy (or so we thought) at 7 pounds, 12 ounces. For the first two months she gained a ton of weight- she was in the 90th percentile and our pediatrician actually thought we were overfeeding her. I was breastfeeding but would pump and feed her with bottles because it was so painful to breastfeed in the beginning. At about 3 weeks she started to cry a lot. We thought she was colicky. At nearly two months, we got the breastfeeding thing down without hurting and she started exclusively breastfeeding. She used to stop nursing and arch back and scream. She’d also scream bloody murder when she was in the car. Even though she is our third child, it felt like my first because I hadn’t experienced anything like that. But many people shared similar stories about colicky babies and promised it would end at four months.

Then at her three and a half month check-up, she hadn’t gained any weight from her two month check up. The pediatrician (whom I have since left) wasn’t worried and told me to come back in a month instead of two. People told me she might be allergic to something I was eating so I gave up dairy and gluten. It didn’t make much of a difference.

I couldn’t bear to see her in so much pain so I got a referral to a gastroenterologist. He said she had reflux and gave us a reflux medicine. The only problem was, since Addie wouldn’t take a bottle, it was very hard to get the medicine in her. I would syringe it in but she would spit it out and it made her throw up a few times. Then he switched us to Pepcid, which required less medicine, and I was able to get it in her and she stopped crying. She was generally pretty happy and would just cry sometimes. But it was a screaming cry, like she was in pain. And now that I know she was crying cause she was in heart failure, it just kills me. I have so much anger at myself for not being more aggressive and for going to that pediatrician in the first place. When I think about how she suffered and how we almost lost her, it makes me so upset.

Anyway, she still wasn’t gaining weight. The gastro scheduled an x-ray of her intestines to make sure there wasn’t a blockage. There wasn’t. She also had an ultrasound of her liver cause the pediatrician thought it felt enlarged. The ultrasound came back that her liver was fine. She had blood drawn to rule out various viruses. Since she got so upset in the car I hated dragging her to these appointments. When she still hadn’t gained weight at over five months, the gastroenterologist suggested we see an endocrinologist and a cardiologist. But he wasn’t like “rush to the cardiologist.” I got the feeling we were just ruling everything out. In fact, the night before, my husband told me to cancel with the cardiologist (it was a 40 minute drive and he knew how upset she got in the car). Thank God I did not cancel. Oh, and I also had an appointment with a lactation consultant that afternoon. That’s where my head was. I still thought it was something I was doing wrong with the nursing.

I knew something was up when the echo took so long. And then the doctor came in. And then another doctor came in. But still, I didn’t get how serious it was. I was sort of relieved at the idea that there was a reason she was crying and not gaining weight and that it wasn’t because of my milk. In fact, even after our cardiologist brought me into his office and told me she had a very rare congenital heart defect and would need open heart surgery, I STILL wasn’t getting how serious it was. It’s a good thing, too. Had I known what we were in for, I don’t think I would have been able to get up from that chair.

We checked into CHLA that afternoon. There was only one surgeon our cardiologist recommended to do the surgery and that was Dr Vaughn Starnes. Who was away till the following Monday. It was March 16, 2010. Which happens to be my birthday. We were put on the 6th Floor until Addie had a cath on that Thursday, the 18th, when we were sent to the ICU. Even then, I didn’t get how bad it was. She was hooked up to the monitors, but I didn’t know what her heart rate was supposed to be or what her oxygen was supposed to be. Good thing I didn’t know what anything meant cause her ejection fraction was 7. I thought they were moving us to the ICU, in part, cause I had complained that the room we were in with three other newborns and a lot of nurses in and out (Addie didn’t sleep at all and neither did I).

I’ll never forget the night before surgery. Addie was still nursing and I had to stop nursing at 2am. There was an older kid who was coding in a nearby room and I just felt sick to my stomach. My husband was holding Addie and I was lying in her crib in the fetal position. I just wanted to step outside my body. I had been holding it together (but for a couple of hysterical break-downs) all week and I just didn’t know what to do with myself.

The surgery went well. Dr Starnes was able to re-implant the coronary to the aorta, she was only on bypass for 12 minutes, and she didn’t have to be on ECMO. A few days later she was extubated. I thought we would be out of there in a week. I was wrong.

Addie could not get off the drips: epinephrine, milrinone, and dopamine. I will never forget those words or how all those machines looked. There seemed to be tons of them. They would not feed her. She would drip with sweat and the sheets needed to be changed 3-4 times a night. She also did not smile. I’ll never forget one of the residents told me she was the sickest kid in the CTICU and it was like he punched me in the stomach. Up till then I had thought she would sail through. She had to. She was so strong that she had been in heart failure and (after the Pepcid) she was smiling and moving her arms and legs and no one could believe she was as sick as she was. That day I realized that things might not turn out okay.

Then I got pink eye and was not allowed in the ICU. And it wouldn’t go away. I would pump every three hours all day and night to keep my milk going. Finally, after 10 days the pink eye went away. She was still on the drips when I came back. I remember dreading those morning rounds, catching looks the doctors would give each other. Entering the CTICU and seeing Addie’s monitor and seeing a heart rate in the 170s and 180s. The next 2 months are kind of a blur. I was spending all day at the hospital and going home (luckily we live 15 minutes from the hospital) to put my other two kids (ages 4 and 2) to bed. Oh, yeah, my husband had to be out of town for work. He came back every weekend but was gone during the week. I remember when Dr Sylvia Delcastillo let Addie eat for the first time in 12 days. She took a bottle then! She downed 2 ounces. And then she seemed to be doing better. But then she got a PICC line infection. Then she got C-diff from the antibiotics to treat the infection. The C-diff knocked her out. They spoke to me about transplant and took some preliminary blood tests to see if she’d be a good candidate. When I heard “transplant” I freaked out. She had to have four PICC lines put in cause they either got infected or she pulled them out.

Then Dr. Starnes came back. She wasn’t getting better and he said he wanted to do another open heart surgery to repair or replace her mitral valve, which had severe regurgitation. He said it was 50/50 whether he could do the repair. And then she had her second cath and the next day, Sunday May 16th, was the worst day of my life. Because of all the meds I guess or I still don’t even know why… Addie became delirious. I don’t know if it was withdrawal or the fact that she was on so many different things (Ativan, morphine, methadone, Dilaudid, the stuff they gave her for the cath…) but she screamed and thrashed and her heart rate was in the 220s! It went on for 12 hours. A nurse who had been in the ICU for 30 years grabbed my hand and started praying. She said she’d never seen anything like it. The next morning Dr Starnes told us there was an 80/20 chance she’d make it out of surgery. All day we prayed and prayed for a repair and not a replacement. And then, I’ll remember forever… we saw Dr Starnes in another room and he gave us the thumbs up. He did the repair. That man is my God and hero. Things got better fast. Addie got off the drips and we went to the step down unit in two weeks. And came home three weeks after that. 89 days from when we were admitted.

We’ve been home exactly one month. Addie is on several meds twice a day: digoxin, enalapril, carvedilol, Lasix and Aldactone, as well as baby aspirin every other day. She has an ng tube and is having trouble gaining weight but, she is nursing and has started taking purees twice a day. And other than the not gaining weight, she’s doing really well. She’s smiley and happy and babbles to herself and loves to watch her brother and sister. She isn’t rolling over or sitting up or crawling or doing anything most almost 10-month-old babies do. And I am guessing that will take time. We are starting PT and possibly OT soon. We are working with a nutritionist and going to acupuncture three times a week. And the best news is that we had an echo last Thursday and it showed improvement. Her mitral regurgitation is moderate and her ejection fraction is 45%. Pretty good when you consider it was 7!! We love her so much and know her heart will continue to get stronger and she will start to put on weight and have a beautiful life. I am forever grateful to Dr. Vaughn Starnes and all of the doctors and nurses in the CTICU at Children’s Hospital Los Angeles. Thank you for saving our beautiful girl.

August 2010 Update

I know it hasn't been long since our original submission but I have such great news I had to write with an update. We saw our amazing cardiologist, Dr David Ferry, this week and got the best news. Addie has normal heart function. He said you can tell her heart has been through something but her MR is holding at moderate and her EF is in the 50s or 60s! And her shortening fraction is 36 (normal is 19-42 I believe). also, she is off the ng tube and gaining weight!!!! And she is rolling over. We are so happy, so grateful, what a blessing!! I cannot say enough how thankful I am to the heroes at CHLA- especially to Dr Vaughn Starnes and his amazing team of doctors and nurses in the CTICU. They are in the business of making miracles happen!!!