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OLIVER — USA
Born November 14, 2017 Late-onset Mother's GBS Status: Not tested Gestational Age: 35 weeks Age Harmed: 3 weeks |
Oliver came in a hurry at 5 weeks early. On 11/14/17 my contractions started and were 2 1/2 minutes apart. My husband rushed home and took me straight to the hospital. Once there, they checked me and I was at a 3. About 30 minutes later I was at a 5 and they moved me to delivery, started IV antibiotics (My GBS status was unknown. Since I was early I hadn't been tested yet) and an epidural. About 2 hours later my doctor broke my water and 3 contractions later my sweet baby boy made his grand entrance into the world.
He was perfect, good size for a premie (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. Honestly, I don't remember exactly when but his grunting did stop. He was a little jaundice and had low blood sugar so they wanted me to supplement. I remember bawling because I wanted to exclusively breastfeed but I did what they told me was best for him. We used SNS feedings instead of a bottle. It's a small tube hooked to a syringe filled with Neosure (formula for premies) that you slip in their mouth while you're breastfeeding. It was definitely a struggle to use but thankfully I had lots of help from my amazing husband.
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!
Monday 12/4/17. Oliver would be 3 weeks old the next day.That morning Oliver was great. Ate fine, took a bath, then nap, then feed at 1: 41 pm... then wouldn't wake up for his next feeding. Since he was a preemie we would sometimes have to wake him up to eat, at least every 3 hours. 4 hours was the longest he had gone. I thought "ok, maybe he's still extra sleepy from his bath. I'll give him another hour." Hour passes. I'm busy between getting the kids off the bus, starting meatloaf and mashed potatoes for dinner. He wakes up slightly but seems sleepy still, doesn't want to eat. I think maybe it's just me, maybe he doesn't want to nurse. So I pump and my husband tries to give him his first bottle. No go. Kids are eating dinner at this point and we, of course, are googling if its normal for a 3-week old baby to go this long without eating...
Every mom blog says "don't wake a sleeping baby" but that didn't feel right to us. I walked from the kitchen to the living room where Oliver and my husband were. I looked at Oliver and thought he was dead. He looked dead. I checked to see if he was breathing, he was. He looked pale or was I being crazy and paranoid? He was in a stupid green sleeper and had a stupid green blanket around him. And green is stupid. It makes skin color look different and I hoped I was imagining it. We took his temperature. It was normal. We called the nurse line anyways. At some point in all of this mess he was grunting... like I thought he was constipated and maybe that's why he didn't want to eat. But then I remembered him doing that after birth.
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. All while trying to remind myself to breathe as well and not have an anxiety attack.
We made it there. I took Oliver in while my husband parked and brought the kids in. There was no waiting around, 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. After the transport team got there, I remember the whole staff just standing at the desk outside our room staring in. I still had no idea what was going on and it made me feel they knew something I didn't and that my child was dying... which he was.
By this point, my husband had taken the kids into the waiting room because it was a lot for them to see... I went out there for a moment while they were trying to get his IV in and we all sat in the waiting room hugging and crying. We'd never been so scared in our lives.
I went in the ambulance with Oliver and my husband met us at Children's Mercy. My in-laws met him there and took the older kids for the night. 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 and wires and blood draws. I went to pump and my husband sent me a text saying they were doing a spinal tap and to not come back yet because he didn't want me to see it. My heart sank. Around 5 am the results of the spinal tap came positive for Bacterial Meningitis.
Our world broke.
The next conversation with his doctor was very intense. He said 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 Late-Onset GBS 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.
I basically stopped being able to comprehend any more of the conversation after they said the word STROKE. They said it was a "small stroke" but nonetheless my heart broke even more.
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 Encphamalcia in his frontal and occipital lobes. He has some developmental delays. We watch milestones very carefully. He has Cortical Visual Impairment. 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, and Physical Therapy all through Children's Mercy. He's had 33 appointments there to date (10/19/18). Plus a repeat MRI, EEG, 2 hearing tests (a 3rd coming next week). Additionally, he has weekly Occupational Therapy with MO First Steps and CCVI (Children's Center for the Visually Impaired). And right now we're doing aquatics therapy through CCVI as well.
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!
Facebook Group:
Oliver's Little Warriors
https://www.facebook.com/groups/501883856947473/
- Carmen DeMata
He was perfect, good size for a premie (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. Honestly, I don't remember exactly when but his grunting did stop. He was a little jaundice and had low blood sugar so they wanted me to supplement. I remember bawling because I wanted to exclusively breastfeed but I did what they told me was best for him. We used SNS feedings instead of a bottle. It's a small tube hooked to a syringe filled with Neosure (formula for premies) that you slip in their mouth while you're breastfeeding. It was definitely a struggle to use but thankfully I had lots of help from my amazing husband.
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!
Monday 12/4/17. Oliver would be 3 weeks old the next day.That morning Oliver was great. Ate fine, took a bath, then nap, then feed at 1: 41 pm... then wouldn't wake up for his next feeding. Since he was a preemie we would sometimes have to wake him up to eat, at least every 3 hours. 4 hours was the longest he had gone. I thought "ok, maybe he's still extra sleepy from his bath. I'll give him another hour." Hour passes. I'm busy between getting the kids off the bus, starting meatloaf and mashed potatoes for dinner. He wakes up slightly but seems sleepy still, doesn't want to eat. I think maybe it's just me, maybe he doesn't want to nurse. So I pump and my husband tries to give him his first bottle. No go. Kids are eating dinner at this point and we, of course, are googling if its normal for a 3-week old baby to go this long without eating...
Every mom blog says "don't wake a sleeping baby" but that didn't feel right to us. I walked from the kitchen to the living room where Oliver and my husband were. I looked at Oliver and thought he was dead. He looked dead. I checked to see if he was breathing, he was. He looked pale or was I being crazy and paranoid? He was in a stupid green sleeper and had a stupid green blanket around him. And green is stupid. It makes skin color look different and I hoped I was imagining it. We took his temperature. It was normal. We called the nurse line anyways. At some point in all of this mess he was grunting... like I thought he was constipated and maybe that's why he didn't want to eat. But then I remembered him doing that after birth.
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. All while trying to remind myself to breathe as well and not have an anxiety attack.
We made it there. I took Oliver in while my husband parked and brought the kids in. There was no waiting around, 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. After the transport team got there, I remember the whole staff just standing at the desk outside our room staring in. I still had no idea what was going on and it made me feel they knew something I didn't and that my child was dying... which he was.
By this point, my husband had taken the kids into the waiting room because it was a lot for them to see... I went out there for a moment while they were trying to get his IV in and we all sat in the waiting room hugging and crying. We'd never been so scared in our lives.
I went in the ambulance with Oliver and my husband met us at Children's Mercy. My in-laws met him there and took the older kids for the night. 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 and wires and blood draws. I went to pump and my husband sent me a text saying they were doing a spinal tap and to not come back yet because he didn't want me to see it. My heart sank. Around 5 am the results of the spinal tap came positive for Bacterial Meningitis.
Our world broke.
The next conversation with his doctor was very intense. He said 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 Late-Onset GBS 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.
I basically stopped being able to comprehend any more of the conversation after they said the word STROKE. They said it was a "small stroke" but nonetheless my heart broke even more.
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 Encphamalcia in his frontal and occipital lobes. He has some developmental delays. We watch milestones very carefully. He has Cortical Visual Impairment. 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, and Physical Therapy all through Children's Mercy. He's had 33 appointments there to date (10/19/18). Plus a repeat MRI, EEG, 2 hearing tests (a 3rd coming next week). Additionally, he has weekly Occupational Therapy with MO First Steps and CCVI (Children's Center for the Visually Impaired). And right now we're doing aquatics therapy through CCVI as well.
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!
Facebook Group:
Oliver's Little Warriors
https://www.facebook.com/groups/501883856947473/
- Carmen DeMata
To learn more about Perinatal & GBS Misconceptions, click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.