Up until my 24th week I considered myself to have the perfect pregnancy. I hadn’t gained much weight, I had no unpleasant symptoms, I was thinking this whole pregnancy thing wasn’t that bad! At 25 weeks, I took my 3 hour gestational diabetes test. I was scared because I was afraid of needles and I was certain it would come back positive. I had been constantly hungry and eating whatever I wanted, the thought of changing my diet put me in a bad mood. But to my surprise, it came back negative. The doctor did allow me to get an ultrasound to pass the time as I sat there in between blood draws.
A few days after that appointment is when I first noticed feeling pregnant. Constantly tired, swollen feet and legs, moody, headaches, and weight gain. 7 lbs in 3 days, I thought it was a little extreme, but I thought, I only gained 10 lbs until now, all that food I have eaten has finally caught up to me. By the next 3 days I was so tired I was taking 2 naps a day, my hands were swollen now, my feet felt like there was slush in them when I’d walk, I felt my breath getting shorter, I gained another 10 lbs, and I had a pain in my neck like I had slept wrong. I remember thinking, “this must be how pregnant women feel”. So I disregarded it because I was coming up on my third trimester, as being normal. That night I woke up at 2am, I didn’t feel right at all, I could barely breathe, my neck hurt so bad it radiated down into my shoulder and chest. So I googled heart failure, and heart attacks in pregnancy, I thought, maybe the pain in my neck and shoulder was a sign of that. It did say to go to the ER, but it was 2am, and so I thought I’d just wait and call the doc in the morning and see what he said. I didn’t want to be the pregnant woman who went to the ER for heartburn. When I woke up, I looked in the mirror and saw my face had swollen up like someone off the movie “The Nutty Professor”. My lips were huge, and my eyes had the biggest bags under them I’d ever seen. So, I called the doctor, he could get me in at noon, so I waited until then. Upon arriving, I gave my urine sample, and took my weight. Gained another 5 lbs in a day. Doctor saw me, took my BP, and left the room. At this time I still thought nothing of it except I was gaining weight really fast. When he came back he said he was admitting me to the hospital for a 24 hour observation, my BP was elevated and there was a lot of protein in my urine, he told me I had developed pre-eclampsia. The only thing I thought then was “oh great, I have to spend the night in a hospital”. If I only had known what that point in my life really meant, I would have been a basket case.
After being admitted, my BP was running 170/110, I had off-the-charts protein in my urine, liver enzymes were dangerously high, and I found out the neck and shoulder pain was internal swelling, or pulmonary edema, which is what was also causing my shortness of breath. It didn’t take the doctor long to inform me, I was being life-flighted to a hospital with a Level III NICU, and that I would potentially be delivering in the next 24 hours if they could not control it. At that time I now knew the dangers of pre-eclampsia, and knew I was only 26 weeks along, with a baby that measured at 24 weeks. Looking back, I think it’s safe to say that’s the moment my whole life changed.
After landing at the Illinois Children’s Hospital, in Peoria, the team of doctors worked fast to try and lower my BP and keep my baby’s falling heartbeat up. My liver and kidneys were shutting down, after only being there 4 hours they had to deliver me via c-section. They were afraid I was going to have eclamptic seizures or a stroke. My daughter was born 1 lb 3 oz and 12″ long. My family and I were of course just mesmerized that the crumpled up looking Barbie doll that was my baby. Her eyes were still fused shut, she had just buds of fingernails on her fingers and toes, and her skin was so transparent, you could see through it.
The first day she did well, in her honeymoon stage, the nurses called it. They couldn’t believe a baby so small was in 21% oxygen on c-pap. The next day her lungs collapsed, even after upping her oxygen to 100% her heart rate, oxygen levels, and blood pressure continued to drop. The doctors were worried, everything they tried, she wasn’t responding to. Finally in the very last attempt to save her, they hooked her up to nitric oxide with the oscillator, and after 3 hours, stabilized her on that. It was a close call, we thought for certain that was it. But she proved us wrong. The next week was long and miserable. Waiting by her bedside to see how she could handle being weaned of the nitric oxide, was the doctors’ main goal, because of the damage it could do to her lungs. But she survived, swollen and limp, she pushed through that first week by the grace of God.
After that, we learned she had no brain bleeds, but a PDA that needed closed. After trying the first round of medications, it worked! She had a slight bilirubin problem that corrected after 3 days under the blue lamp. Then came the feedings, starting with 1 mL every 3 hours, she gradually weaned up to 15 mL and was on full feeds, so the PICC line came out. By her 1 month birthday she weighed 2 lbs 7 oz, and was on nasal c-pap. It was shortly after that the doctor deemed her a grower and feeder! There were a lot of reflux problems with her keeping food down, that we are still dealing with, but meds are helping. Then she had her eye test to test for ROP, which 90% of micro preemies have some degree of, but it was negative. By the time she was 6 weeks old, the nurse practitioner tried her on the vapotherm over 2 weeks time it went from 6L to 1L, and she was tolerating it well. By the time she was 8 weeks old, she was on no oxygen support and drinking 8 ML’s once per day from her bottle. Once my breastmilk supply ran out, she was switched to formula, and had the feeding tube up her nose instead of her mouth, she took off with eating. She was 2 months old when she was moved into her mini crib, taken off sodium, potassium and caffeine, while eating 3 full bottles per day. Finally at 4 lbs 1 oz, after 68 days in the NICU, doctors discharged her!
Everything the NICU threw at her she conquered, and for being so small, had minimal issues. Today she is 6 months old, 3 corrected, and is 10 lbs 11 oz 22” long. We had the Synagis shots every month, and remained in isolation since discharge, which has kept her healthy all flu season long. As far as others can see, she is a “normal” baby now. When I hear that I laugh for two reasons. One, because she has always been a normal baby to me, and two, there is nothing normal about her!
