Bean was born 7.5 weeks early at Mercy San Juan Hospital in Sacramento because I had Preeclampsia/Toxemia. She weighed 3 lbs. 2 oz. and measured 16 inches. She progressed well in the NICU and went home three weeks later weighing 3 lbs. 15 oz. She was at home, visiting the pediatrician weekly, for three weeks. During that time, she gained weight weekly and was up to 5 lbs. 8 oz. on Monday, April 6. On Tuesday, April 7, we took her back to the pediatrician because of a cough she had had since Sunday, April 5 that seemed to be getting progressively worse. At that point, the pediatrician did an RSV test - a respiratory virus that effects infants and is especially hard on preemies. She tested negative in the pediatrician's office, but the doctor said that we should do an additional test at the hospital where the equipment was better since she was working so hard to breathe (she had what is called "retractions" or "pulling" very bad - we could see her rib cage every time she breathed). Sure enough, she tested positive for RSV at the hospital and was admitted. We spent the next five days with either my DH or me at the hospital with her. Breathing treatments were done, she was fed slowly through a bottle because of her congestion, the nurses sucked out her nose to keep the congestion down, and she wasconnected to monitors to watch her vitals.
When she didn't start to improve and she stopped feeding on Thursday night, they began to discuss transferring her to a PICU in Sacramento. Sure enough, on Saturday, she was transferred to Sutter Memorial Children's Hopsital in Sacramento via helicopter (with one of the same flight nurses I had when I got transferred to Mercy two months earlier). When she arrived, she was found to be in critical condition due to her struggling to breathe for so long, and was put on a ventilator to "give her a break and a chance to recover". The doctor there also saw that her heart looked overly large on the X-rays that had come from the Chico hospital. After doing an EKG and an Echocardiogram, they found her left ventricle to be five times the normal size for her age. She was soon diagnosed with Dilated Cardiomyopathy. She stayed in the PICU in Sacramento for almost a week. A heart cathetirization was done to check the structure of the heart (the pattern of blood flow) and all was found to be in the right place. She remained on the ventilator, paralyzed by a paralytic to allow her to relax and she was on IV medication to help her big heart work more efficiently. The doctor there (who we loved) decided she would be better off at a heart center and was able to get her transferred to Lucille Packard Children's Hospital (LPCH) in Stanford. She was picked up by a team of transport nurses from LPCH and transported down via ambulance, still ventilated.
Once we arrived at LPCH, many of the same tests were repeated that had been done at Sutter and the findings were the same. Her heart was very big, and was in fact putting so much pressure on her left lung that she was having difficulty inflating it. They did another cathetirization and this time also took a tiny piece of her heart for testing to see if they could find what had caused the cardiomyopathy (it is often caused by an infection and that sometimes will change treatment options), but it was found to be idiopathic.
Although transplant was immediately brought up as a possibility, the team there immediately started working on getting her off of the IV medication and onto oral medications for her heart. Often, children can go home and live quite normal lives on oral medications for years and years with the condition that Bean has. She was successfully weaned off of the ventilator, then weaned off the IV medication and seemed to be doing well on the oral medication. We were able to take her home three weeks after being admitted to LPCH. She went home taking Enalipril, Lasix, and Aspirin.
She seemed to do well for a couple of weeks. She saw our pediatrician here in Chico regularly and was breathing and eating well. But, just prior to Memorial Day weekend, she started having some digestive issues - throwing up feeds, crying/screaming after eating and before any bowel movements, and just being miserable in general during and after feeds. We traveled to Bakersfield that weekend to see my DH's family and her condition seemed to worsen. I remember doing google searches, changing formula for her, posting questions on my Children's Cardiomyopathy Foundation (CCF) mail listserv, calling the on-call pediatric cardiologist at LPCH - everything. Everyone seemed to be thinking it was just normal baby reflux. After a week of it getting gradually worse and worse, she started to "pull" again with her breathing and we ended up back in the emergency room of our local hospital at 11 p.m., waiting for the transport team from Stanford to come and pick her up. She was in cardiogenic shock when she arrived at Stanford early the next morning. She was ventilated again, put back on IV meds for her heart and talk of transplant began again - this time as the only option.
It took almost a week to stabilize her to the point where she could be listed for transplant. She remained ventilated, often requiring a paralytic to keep her stress levels down. She extubated herself three times, tore out a few IVs and a central line along the way (she was never one to accept being constrained), had a Berlin Heart waiting in the hospital in case her heart totally failed at some point, and we were told to be prepared to wait for months and months for a heart.
Twenty-eight days later, our miracle happened! A heart was found that was compatible with her size and blood type and she received a transplant. She immediately started to improve and she was able to move to the Ronald McDonald House with us less than four weeks after the transplant. She had some feeding issues at first and required an NG tube and she has bad veins, so she was fitted with a broviak line to help with blood draws and sedation for the required biopsies and medicines if she was to require them.
Her first biopsy came back a level 3 for rejection (pretty high), so she went back into the hospital for three days to receive high doses of steroids. She was tested two weeks later and was a 1A - she has had one more level 3 in January of 2010 and just recently received her first level zero (May 2010)! So, the heart seems to be working out for her little body.
She is currently doing well. We were able to move back home in October and she no longer has the NG tube or the broviak line. She is not growing as fast as they would like her (she is still under 15 lbs at 15 1/2 months old), so we are getting a referral to an endocrinologist and we regularly see a GI doctor. But, other than that, she is doing great. She is in the Early Start program with Far Northern Regional Center and is receiving Physical Therapy and Cognitive Therapy through them (which is wonderful).
Bean is truly a miracle and we are so thankful to have her and her second heart. I can not possibly ever thank or give enough recognition to the family that made what must have been an agonizing decision to give their baby's heart to mine. That baby and family will always be a part of us, even if only anonymously - we have a special responsibility to take care of that special heart!