The following evening, she helped extubate herself and was placed on C-PAP. She was also placed under the Billie Lights for being jaundice. Three days later she was off the C-PAP. Shortly after that, she came out from under the lights. She was given breast milk, mine, if it was available, donor milk, if it wasn't. For the first 12 days of her life, she was in one of the critical rooms. She then got moved to intermediate care. She was only there for a little more than a week. She then was placed back on C-PAP and put back in the critical room. She had become anemic and was having difficulty breathing. She was about three weeks old.
After a week of being in the critical room again, she was once again sent back to the intermediate room on room air. From there, we figured she would go home shortly. Shortly turned into a month and a half. She was hypertensive (had high blood pressure), so the pediatric cardiologist was called in. They thought they heard a heart murmur so they did an echocardiogram. The cardiologist wanted her blood pressure monitored when she was asleep. So that was done. Princess also kept having issues taking a bottle. She was on my breast milk exclusively. She would desat while taking the bottle and sometimes it would be really deep with very marked color change. Everyone said it was a preemie thing. Then when she was two months old, she developed GI bleeding. After abdominal x-rays and taking her off the fortifier, they tried her again on the bottle, this time with speech meeting with her to develop a feeding protocol. She only had to go 2 days without desatting and then she would get to go home. Well, she would go almost 24 hours and then desat in the middle of the night. It was very frustrating to watch my little girl go through this. I began to notice a rash on her neck and she began to choke when she would eat.
I was a 28 week preemie 30 years ago. Around 2 months old, my mom noticed the same thing: I would start choking when I ate. I was already at home, so she told my pediatrician about it. The pediatrician decided it was a milk protein allergy and put me on soy formula. I relayed this information to Princess's neonatologist. I wasn't sure if it was a coincidence or if there was something to it. He said that they didn't use soy formula on preemies any more and that he had only ever had a handful of preemies with a milk protein allergy before.
Well, one Sunday night, Princess began to be fussy. She'd never been fussy before. After only taking half of her bottle, she threw it up. The nurse knew this wasn't normal for her, so she alerted the doctor. The doctor stopped all feeds and started an IV. The next day, she was put on pedialyte and then formula. No more breast milk for her. It was a milk protein allergy. Three days later, she was sent home.Once she got home, her pediatrician recommended she see a pediatric cardiologist to monitor her blood pressure. Well, before we could get into the cardiologist, she once again presented with GI bleeding. The pediatrician sent us by ambulance back to the hospital not even a week after being home. More testing and it was determined it was probably the last of the milk protein allergy and we were sent home 24 hours later.
The following week, we were in the cardiologist's office. He found a mitral valve leakage (the source of the heart murmur) and left ventricular cardiomyopathy. Well, thinking it could be a misplaced valve, she was once again admitted to the hospital, this time in the Pediatric Intensive Care Unit (PICU). She was attached to the monitor again and started on medication for her hypertension. Her potassium level was also elevated at the time. After 5 days of being poked numerous times for blood sugar checks, lab draws and IVs, Princess finally got an MRI to find out if there were any narrowing of the arteries to the kidneys and if there truly was a misplaced heart valve. The MRI was clean, so we were sent home.
Princess has been diagnosed with Left Ventricular Hypertrophy (LVH). This is from the hypertension. After meeting with the leading pediatric cardiologist at Stanford's Lucile Packard Children's Hospital, he has said that it should go away once the hypertension is under control.
Princess has also been diagnosed with a rare disease: pseudohypoaldosteronism type 2 or PHA2. This causes hypertension and hyperkalemia (high potassium). The only treatment for it is thiazides. She's on the medication now. It seems to be managing the both the hypertension and the hyperkalemia. She will have this for life.She will not out grow it. She will be on medication for the rest of her life and will have to monitor her potassium intake as well. She is getting ready to start eating real foods soon and I know that once that happens, we will be watching what she is eating to make sure she is not getting any high potassium foods. As for how low of a potassium diet she'll have to be on, we're not sure yet. We meet with the nephrologist again in November.
Princess is a Beads of Courage (BOC) Member. She became a member in the NICU and has received beads that tell her story. Every night she has stayed in the hospital, every day she has been poked, every time they changed her NG tube, all her echocardiograms and ultrasounds and x-rays have all be documented with a bead. As a BOC member, she will continue to receive beads any time she is admitted to a BOC participating hospital. This program is a wonderful way for her to be able to own her own story even though she will never remember any of these things that have happened to her as a infant.
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