After a relatively healthy pregnancy, Oliver came into the world in a hurry, 5 weeks early. On 11/14/17 my contractions started and were 2 1/2 minutes apart. My labor was only a few hours long and I received 2 hours of antibiotics since my GBS status was unknown.
He was perfect, good size for a preemie (6lb 3oz) but he made kind of a funny noise. The nurses told us the grunting was him struggling to breathe. They debating on whether to put him on oxygen or not but ended up deciding against it. He was a little jaundice and had low blood sugar so they wanted me to supplement. We used SNS feedings instead of a bottle. It's a small tube hooked to a syringe filled with Neosure (formula for preemies) that you slip in their mouth while you're breastfeeding.
Unfortunately, even though there wasn't anything majorly wrong with him (at the time) we didn't get to leave the hospital like a normal delivery. He stayed in the NICU there for 8 days to feed and grow. He had to gain for 2 consecutive days before we could leave. And after what felt like an eternity we got to go home the day before Thanksgiving!
Our family was all together and life was "normal".
Until it wasn't.
Monday 12/4/17. That morning Oliver was great. Ate fine, took a bath, then nap, then fed at 1: 41 pm... then wouldn't wake up for his next feeding. He started turning pale and he was grunting.
Nurse line tells us to take him to Urgent Care. We pack up all the kids and speed there. By this point, I was wishing we would have taken him straight to the ER. But we didn't know better and we were headed in the opposite direction. I sat in the back seat with my hand on his chest to make sure he never stopped breathing.
We made it there, I went straight to the desk and told them I thought my son was struggling to breathe. They had a nurse come out immediately to check him and they took us back to a big room. Room 4.
He was very lethargic by this point, still no fever. He was very whiny but it was like a sad, sick, weak cry. When he tried to cry his eyes would turn purple. The doctor was examining him and she asked if she could hold him. I agreed but then asked why his eyes did that and she slowly backed away all the way to the wall. She told us she knew something was wrong with him but didn't know what, and that they were going to transfer him to the ER.
The ER denied him and said we needed to go straight to the NICU. While waiting for the ambulance they drew blood, started oxygen and tried to get an IV going for fluids.
We were rushed to the NICU and immediately surrounded by an army of doctors. By the time we got there, he had a fever. They started him on broad-spectrum antibiotics right away. They told us they thought he had some kind of infection and the tests began to figure out what it was.
The first night seems the blurriest. The doctors weren't sure if he'd make it through the night. There was a chest x-ray that came back clear. Lots of tubes, wires, blood draws and a Lumbar Puncture (spinal tap).
Around 5 am the results came positive for Bacterial Meningitis.
Our world broke.
The next conversation with his doctor was very intense. He said we should prepare for the worst but hope for the best... If Oliver could make it through the next 48-72 hours then he would be out of the woods (survival-wise). And that if he did, it would get worse before it got better. Meningitis protocol is 14-21 days of IV antibiotics. So if he made it, we knew we'd be there for a while. They also said we did an amazing job of bringing him in when we did because if we would have waited only a few more hours then they were sure he wouldn't have made it.
We watched as our son fought for his life.
Sometime on Tuesday, Oliver's eyes (for lack of a better description) went crazy. They weren't equal or responsive. They were jittering all over the place. It was very hard to look at. Eventually, he closed his eyes that day, which oddly made me feel better. But little did we know, his eyes would never be the same again.
Sometime that day, he had a head ultrasound. He had cerebral edema which meant his brain was severely swollen. I know his team had spoken with the Neurosurgeon but they decided that surgery wasn't a good option. They discussed with us trying Mannitol. It hasn't been tested in newborns and is normally only used in adults and older children, so it was a big deal to use it for him. The basics of it being, it strips the body of all fluids, so kidney failure was a concern. But the benefits outweighed the risks as this was our last option to get the swelling down. He was in a lot of pain from the swelling and was given morphine over the next couple of days.
The Mannitol was administered Wednesday morning and later that day the swelling started to go down but his brain was still inflamed for a while afterward. He reopened his left eye but didn't open his right eye at all that day. It was also later that day when his blood cultures came back positive for Group B Strep. I didn't know what the was. But they explained that Late-Onset GBS was what caused his Meningitis. (Through this group I will share information regarding the different types of GBS, prevention, and symptoms in newborns)
By this point, we had many teams in the NICU; General, Neuro, Infectious Disease. All with lots of information for us and lots of concerns.
He was having seizures. Thursday he was hooked up to a video EEG that they wanted to run for 24 hours. It turned into 50 hours. They put him on Keppra but that did not control the seizures so they additionally put him on Phenobarbital. Neuro was very concerned by the patterns his seizures followed. They said they didn't follow "meningitis seizures" and he was also having "sub-clinical seizures". We did genetic testing to see if there were markers for epilepsy but wouldn't know the results for months. (Spoiler: genetics testing turned out normal!)
Good news from Thursday was that he peeked his right eye open 3 times, he started a feeding tube (one step closer to actually nursing), and he made it through 72 hours 🙌
Saturday, the EEG came off and after 58 long grueling hours, I finally got to hold my baby boy. I also got to try to nurse him after pumping (he was on restricted fluids). He didn't latch but bit down a few times. Baby steps in the right direction!
His eyes were finally equal and reactive, even though he still had ptosis of his right eye. It would be week 3 before he fully opened it again!
Over the next few days, we focused on rest and getting stronger. We got to hold him more, I tried to nurse more, things were looking better. He was stable and we were so so thankful.
The next week would be full of more tests. Repeat head ultrasounds, a repeat EEG (this time only 1 hour), a repeat lumbar puncture, and an MRI. He even got to participate in a study to see why some babies are more susceptible to Meningitis and Sepsis.
The results of Oliver's MRI were not at all what we were hoping for. There was a lot to take in during this conversation with his doctors. The first being that he had a brain abscess and would need to stay for 4 weeks of IV antibiotics. The second, he had encephalomalacia, multiple areas of damage in his frontal and occipital lobes. Both vision centers were damaged and the abscess was on the nerve for his right eye which was causing the ptosis. Third, at some point, he had had a stroke.
The rest of our time there was spent healing and talking about his future. He struggled to gain weight and was anemic. He had daily labs, a lot of midlines, feeding tubes, he basically got picked on all the time.
We spent Christmas and New Years in the NICU and on 1/2/18 we finally got to bring our baby home!!!!!!!!!
Like many NICU families, the struggle doesn't stop once you leave. He has Encephalomalacia in his frontal and occipital lobes. He has developmental delays. We watch milestones very carefully. He has Cortical Visual Impairment, abnormal gait, Hypotonia, laxity of ligaments. He's had torticollis, hemorrhoids, excessive dry scalp that has caused hair loss and thrush. We also know that hearing loss and Cerebral Palsy are future complications we have to look out for.
He sees Neuro, Special Care, Ophthalmology, Rehab, ENT, Physical Therapy and Feeding Therapy all through Children's Mercy. He's had 57 appointments there to date (4/25/19) including 2 repeat MRIs, a repeat EEG, 4 hearing tests, tubes, and 2 ER visits. Additionally, he has weekly Occupational Therapy with MO First Steps and CCVI (Children's Center for the Visually Impaired), a teacher from CCVI that comes once a month, and a Speech Language Pathologist that comes twice monthly.
Our schedule is very busy but he has come so far and makes every step beyond worth it ❤. We love him more than life itself and can't wait to see the amazing things he will do in his life!