My little Lulu is a special little girl. She was born at 29 weeks, and she was 2lbs 2oz. I had severe preeclampsia that came on in a matter of days. My sister was getting married on Valentine’s Day, and I started feeling sick the week before. I blew up like a big ole whale (hello water retention!) As her maid of honor, I totally did not want to ruin her wedding, so the day before and the day of, I sucked it up and didn’t think anything was really wrong. After that, I went to work for 2 days. I can remember not being able to get comfortable at my desk and everyone and everything annoyed me. I picked up Mariah from daycare, and when we got home, I was scared. My guts were hurting me so bad! I made her pizza rolls for dinner, and when I tried to eat, I just felt worse and ended up making myself get rid of the food in my belly. I called my mom and she came over. In the night, the pain was so bad, I drove myself to the hospital in a blizzard while my mom stayed with Mariah. My blood pressure was off the charts! My doctor was there within a half hour after being woken up. He prayed with me, something I will never forget, and he counseled me on preterm birth. After a shot of tordol and a shot of steroids, I was on my way to critical care in Grand Rapids. I was there for 3 days before Luella came so those steroids could work on her lungs. My little sis cut her honeymoon short to come see me! I still feel bad about that, but what a great sister and brother in law. After Luella was born, she was a good preemie. She started on C-pap, moved to oxygen, feeds were slowly introduced, and we went home after 6 weeks with no major problems. As far as preemies go, she was an excellent patient.
After Luella came home, we still had “care time” every three hours and she was eating like a champ! But after about 4 weeks, it was time for a doctor visit and immunizations. They wanted to give her a ridiculous amount of shots, but I said only 2 and we would come back in a week for more. She was only 5 lbs. After those shots, pnuemoccocal and Hib, she wasn’t right. I knew the side effects of immunization- fever, lack of appetite, maybe some general grogginess. She had those side effects, so I called her doctor. He said to give her some Tylenol and she would be fine. I’m still kicking myself for not taking her to the ER right away. On the third night, at the 3am feeding, she completely refused her bottle and kept crying. We rocked, we walked, we patted, we changed a dry diaper. She still refused the bottle, but after about 45 minutes, she calmed down. So we fell asleep on the couch, Lulu on my chest. My mom was doing the 6am feeds for me so I could get a chunk of sleep in, but by this point, Luella was doing a pretty good job at waking up for those feeds. My mom never heard her, and no one woke up until 8am. When my mom came down, she woke me up right away, knowing it wasn’t right she never heard Lulu on the monitor at 6. We couldn’t wake Luella up. She was pale, her eyes were rolled back, she was barely breathing. We raced into the hospital. There, they started a vent, an IV, and Luella rode the helicopter to Helen DeVos. I followed behind in my car, and we were there for a week.
Luella had a Hypoxic Ishiemic Event. That is a fancy term for a period of time with little to no oxygen. It caused brain damage and seizures. The doctors called it a “near-SIDS event,” but I know what happened. It was those immunizations. Not the immunizations themselves, but the side effects. A lack of appetite in a 5lb baby can be deadly. She was extremely dehydrated to the point that her electrolytes were severely out of sync. Bringing them back to normal was what caused the seizures.
Ever since that “episode,” a term I hate because it makes it sound like a sit-com, Luella has not been right. We have had feeding problems, developmental problems, growth problems, and sleep problems. I know it’s all related. It has to be. My little Lulu was perfect when I brought her home from the hospital the first time. She had no feeding problems, she was growing at a good pace. That summer, we ended up back at the hospital for a week because I was having so much trouble getting her to take the bottle. We even had a nurse come in that can feed any baby, and she couldn’t make it work. I did not want Luella to have a feeding tube, so we troubleshooted. She couldn’t take my pumped milk anymore; we had to switch to a special formula, cut an X in the bottle nipple, and add barley. I kept pumping though, just in case. We had an entire deep freeze full of my milk. It was 2 years later when my mom finally dumped it all. I cried about it for days.
Today, Luella is 4. She doesn’t talk right, she still has some issues with food, and the girl hasn’t ever slept right! She is also very “rough” with her movements. It’s because her brain is trying to make connections in new areas; the atrophied parts are just dead. There is nothing wrong her intelligence, though! She is one smart cookie. We met with an amazing nurse practitioner at Helen DeVos neurology. She recommended a sleep study, melatonin to help Luella sleep, and more speech therapy. So we drive an hour to Muskegon every Thursday for speech, in addition to the speech she gets through the school system. The sleep study found mild sleep apnea, so our next stop is an ENT to check out her tonsils and adenoids. Sometimes, if they take those babies out, kids sleep a lot better. That would be awesome!
This post got long, and possibly a little to personal, but it’s also a very abbreviated version. If anyone has anything to add, or any positive recommendations for us, that would be great! My special little Lulu is my world, and I will continue to keep fighting for her.