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MASON — USA
Born September 13, 2019 Early-onset Mother's GBS Status: Tested positive Gestational Age: 39 weeks 2 days Age Harmed: At birth |
On September 13, 2019 at 4:13pm, Mason entered the world. What should have been the best day of our lives, was the beginning of the scariest time I’ve ever endured. People often ask, “Wasn’t your pregnancy perfectly fine?” “Was he full term?” “Did you know something was wrong?” “How did this happen?” Usually my response is, “I’m not ready to talk about it.” Because, yes, my pregnancy was amazing… yes, he was full term… no, I didn’t know something was wrong & I just simply didn’t want to explain it to anyone. I barely went out in public the whole time Mason was hospitalized, scared someone would see me & ask questions. There was nothing wrong until I was in labor. The doctors all tell me that what happened to Mason & I was so rare. “It’s no one's fault.” We never in a million years would have expected what happened, to happen to us...especially after such an amazing pregnancy.
The night before Mason was born, I suspected my water had been broken & I was leaking fluid & having some small contractions, so I called the hospital, packed my things up and we went in. I tested positive for GBS (Group B Strep) around the 35 week mark, which you need to have antibiotics for in labor, so I wanted to make sure I went in early enough to have them started. I was already 4cm dilated. They ran some tests. The first was positive for fluid and then they followed up with a second test that came back negative. So, I was sent home… I went home and went to bed. The next morning the contractions continued and by the afternoon were closer together, lasting longer and more painful. I called the hospital again and couldn’t get a hold of someone. I just knew it was time so off we went.
At the hospital I was brought into L&D, they started their exams & I was admitted. I was now 4.5cm dilated. They started my IV of antibiotics. At this point everything was still very normal. Jack called my mom to let her know it was time & she was on her way. My midwife, who was AMAZING by the way, started asking me about pain relief options (I was going for a natural birth) I remember asking for a heating pad & eventually the nitrous oxide.. I never even made it to the point of receiving it. This is where things start to get a little bit blurry & scary for me. If you’ve been in labor before you know you’re monitored for contractions and the baby’s heartbeat. If you’ve never experienced this, you basically have two belts that wrap around your belly with sensors hooked up to a monitor. My contractions were so bad (which I didn’t know because it was my only experience & I tend to have a higher pain tolerance) that I was given a shot to slow them down, alleviate some of the intensity and because Mason wasn’t handling them well. Shortly after this I could hear the monitor for the baby’s heartbeat slowing down. I didn’t know anything was actually wrong until the nurse had me move to my side and gave me an oxygen mask. The heartbeat was back to normal. I remember the second I had an oxygen mask on looking at Jack and asking him what was wrong.. as if he had any idea. He told me everything was okay. (Quick shout out to Jack for being so calm and keeping it together for me.) At this point I don’t know what order things are happening, but I want to describe my experience to the best of my ability. Heartbeat had slowed down and we couldn’t hear it round #2. I was on my hands & knees rocking back and forth and they picked it back up. Not even an hour later, I was 9cm dilated. Things were happening fast and this sent the baby into distress. I remember them checking the baby and putting a lead on the baby’s head to better keep track of what was going on with him. Mason’s heartbeat was lost for the third time. This was the scariest point for me and one of the last things I remember. I remember my nurse had called in a doctor prior to come check on me. She was now screaming down the hallway for a doctor. (Thank God for things would have ended very differently had she not.) They then told me they needed to get the baby out as soon as possible. I remember scribbling a signature consenting to an emergency c-section and was being rushed away before I even handed the clipboard back. In the O.R. I remember there being what seemed like a million doctors. Now normally for a c-section you’re awake with your significant other in the room. This was not the case for us. I was by myself and completely put under. Jack had gotten suited up, was made to wait and unfortunately wasn’t allowed in. The last thing I remember was one of the doctors telling me they were going to get my baby out and the anesthesiologist telling me to breathe.
Now from here on I was asleep, I’ve had my family and the doctors fill me in on what happened next. It took about 7 minutes start to finish to get Mason out. When he was born at 4:13pm he was not breathing and he did not have a heart beat. He had made a bowel movement in utero and had inhaled the fluid & meconium. The doctors worked on resuscitating him. I’ve been told it took 5 minutes to do so. For those who don’t know, the brain can only go about 6 minutes without oxygen before it starts to die. Mason is truly a miracle. Once they got him, he was rushed to the special care nursery and the doctors continued working on him. He was having seizures & could not breathe on his own though he was trying. They tried to clear his lungs and he was intubated. They knew he needed to be sent to Boston, so they called them up for transport.
While all of this was happening I was starting to wake up. Never in a million years would I have expected the news I received. I woke up in L&D and a nurse explained to me what was going on. I stayed as calm as I possibly could, which was probably the best thing I did for myself. I kept the mind set that if I stayed calm and remained positive everything would be okay. If I fell apart, I felt as though my whole world would too.
Jack, who was with the baby in the nursery, waited for transport. I don’t know what he went through, I don’t know the things he saw and I know that someday he will share every detail, but right now he’s not ready. My mom who was also with Jack and the baby at the time I was asleep has given me the information I am sharing. She left Jack and the baby to be with me knowing I couldn’t be alone. I waited patiently in a room with my mom and dad for any shred of news. I was told before Mason was transported to Boston, they would bring the baby by my room. I was texting Jack and finally got the first picture of my baby boy. I then waited what seemed like a life time to see them both. When they finally did bring him by, I remember being so scared to touch my own baby, that I waited for someone to tell me it was okay. He was on a ventilator and all wrapped up in blankets. I remember hugging Jack so tight and rubbing Mason’s feet saying, “I’m your mommy”. NOTHING in life can prepare you for a moment like this. I can’t say it enough, you never expect something like this to happen to you; especially so unexpectedly.
Mason & Daddy went off to Boston Children’s hospital to the NICU. Where he was then hooked up to monitors, an EEG to monitor brain activity and all sorts of medicines. I wasn’t there for the first 24 hours of his life and couldn’t have felt more helpless. But I knew he was in the best place in the world, with the best doctors and the best daddy. I didn’t sleep the whole night. My mom and I basically took turns closing our eyes for a few moments at a time. I could hear other babies crying in the hallway and I remember smiling for a minute being so happy for someone else and then the next minute being heartbroken for myself.
The next day the doctors talked to me about a “pass” to go see him for the day or possibly being transferred to Boston. Since I was a surgical patient, at first being transferred seemed unlikely due to insurance. The caseworker we had was amazing and fought to get me there. Some of the reasons that had to be used were not as amazing. They needed a compassionate cause and I’ll never forget the causes they had to use. Finally my transfer was approved and Beverly Hospital paid the expenses of my transport. I was finally on my way to see Mason and Jack. Jack had, of course, been keeping me updated and did not leave Mason’s side. He had sent me a video of Mason opening his eyes for the first time, tickling his feet and they even had to basically strap Mason down for being so feisty. It still breaks my heart that I wasn’t there for those moments, but I’m glad that Jack was.
When I finally got to Boston I was brought to my room and Jack came right over. I was staying at Brigham & Women’s. Mason and Jack we’re only a hospital bridge away. I wasted no time going to see my baby. Jack pushed me in my wheelchair as my mom and stepdad trailed behind. We got to the NICU and I prepared myself for heartbreak. We entered those doors and I saw Mason. I got out of my wheelchair and suddenly I felt no pain…I felt no heartbreak…only love. I couldn’t see the tubes, the leads, the monitors, or the IVs. I only saw my baby. I grabbed his hand and he grabbed mine with such a strong grip, that I wasn’t expecting. He looked at me and tried to cry. I looked back at him and with tears in my eyes I told him “You’re okay, you’re fine.” I told him to be calm. “We don’t cry. There is no crying.” I told him how I had been trying to get to him all day. I just stood there for God only knows how long, staring at him, talking to him; nurse after nurse asking me if I needed to sit down. Nothing else mattered.
Because Mason didn’t get oxygen at birth he was diagnosed with Hypoxic Ischemic Encephalopathy. Due to this, Mason was being cooled through a process called therapeutic hypothermia to help his brain. He was also being monitored for seizures on an EEG and on a ventilator to help him breathe, but he was conscious… for about the first two days. After that Jack and I went in for a visit and they explained to us that they had “taken him out of the picture”. They sedated him into what I can only describe as a medically induced coma. The machines were breathing for him & vibrating his body. I remember seeing him with no color in his skin, he was so pale. Seeing him like this was so scary. They wanted him to basically relax. Everything was working for him. Time in the NICU now feels all jumbled and mixed up. I don’t know how long he was asleep. I don’t know how many days a machine was breathing for him. I don’t remember how long he had the EEG on his head. I just know it all happened. It took me 5 days to even announce that Mason had even been born.
At some point we had a meeting with the doctors and they explained to us what was going on. Mason was septic. A word you never want to hear especially describing your newborn. He had contracted GBS and he had not gotten the oxygen he needed at birth. He had pulmonary hypertension, his lungs were constricting not letting the blood in. There seemed to be something wrong on every level and it was all due to him having the infection and the initial lack of oxygen. He had been treated with antibiotics this whole time for his infection and the only way to see what damage might have been done to his brain was to get an MRI which they couldn’t yet do. Because of the lack of oxygen and seizure activity Mason underwent the cooling process for three days. Usually when you see babies in the NICU they’re being kept warm. We had to wait for him to be warmed back up for an MRI. Days had gone by and he had been warmed but needed more support from the ventilator. They still couldn’t do an MRI and at one point he was transferred from the NICU to the surgical ICU, in case he needed to be put on an ECMO machine to help his heart pump the blood. This would have meant Mason was basically on life support. We never made it to that point, thank God. During this time in the ICU, the biggest concern was his lactic acid levels. The first number I remember was 18. A normal lactic acid level is about 2.3. So Mason’s was extremely high. He was put on some medications to help bring it down to normal. We watched for days as it came down and every time it did we celebrated. I’ll never forget one of his nurses saying, “YOU GUYS COME LOOK, WE’RE OUT OF THE RED!” A huge success. After a few days in the surgical ICU, they transferred us back across the hall to the NICU, since Mason did not need ECMO.
Back in the NICU we waited patiently for Mason to be weaned from his ventilator. A little bit each day, making sure he could handle every wean. Still waiting for an MRI, he was also being weaned off of sedation. After a while, the nurses and doctors brought up concerns of Mason not yet having any signs of movement or waking up, so he was put back on the EEG machine to check his brain activity. Later that day he began to move his lips and wiggle his toes…another big success. The next day he began to open his eyes and wake up again.. and the EEG leads were taken off after a 24 hour watch. We were now about two weeks into our NICU stay and little did we know it was about to be our best day since we got there. We finally after TWO WEEKS were able to hold our baby for the first time. Mason was given a little sponge bath, had his hair washed for the first time (we finally got to see all of his blonde fuzz). He was then handed over to his mama. I held him for hours. It was such an indescribable feeling. My heart was the fullest it had been in weeks. When I was finally done (mostly because I couldn’t be a baby hog) Mason was passed along to his daddy for the first time and my heart was full all over again. This was one of our best days.
Within the next day or two, we were told Mason was being moved to the ANEX, which was a little bit more private part of the NICU. Before he was moved we got the call that it was MRI time. We walked along Mason while he was wheeled into MRI and then Jack and I waited for what seemed like forever. After hours we finally got the call that he was done and was now going to his new bed space. He graduated from your typical NICU bed to a crib. I held him for a little while. His doctor in came for a visit and planned a time to meet and go over results. As we were talking she had told us that he was to come off of the ventilator in the next 24-48 hours. What happened next was unexpected and a scary/exciting moment. I needed to take a break from holding Mason to pump, so we called in a nurse to put Mason back in his bed. Since he was on the ventilator it took a NICU bedside nurse and a nurse that worked with ventilators to move the baby and make sure everything stayed where it’s supposed to. Mason was being put back into bed and having his ventilator tubes propped up when out came the ventilator. Not being our nurses specifically, they called for help as a precaution and the panic set in. Monitors were flashing, bells were dinging and what seemed like 10 doctors and nurses came quickly filing in. Seeing this panicked me into a breakdown and as I sobbed into Jack’s chest, one of Mason’s doctors came over to me and calmly pulled me away from Jack and told nurses and doctors to move aside so I could see him. “Look at his heart rate and blood pressure, it’s better than mine…look at his color.. he’s nice and pink… this is a good thing, he was ready to come off of the ventilator.” I felt a wave of relief come over my body. His nurses and doctors checked him out and set him up with oxygen through a nasal cpap just to assist him finally breathing on his own. Shortly after that we finally heard Mason’s cry for the very first time. A few days later, he was breathing completely on his own with no assistance.
The next day we had our meeting with neurology for Mason’s MRI results. We entered a room with one of Mason’s doctors, nurses, nurse practitioners, social worker and the neurologist. We went into this meeting super positive and ready for some good news. Unfortunately for us, we didn’t get the news we had expected. We looked at images of Mason’s brain which to us looked exactly like that, images. The neurologist explained to us what was going on in words we could barely understand. To break it down, the brain is made up of white matter & gray matter. The white matter in Mason’s brain was brighter than it should have been signifying there was an injury to his brain. He explained to us that this could either have been caused by one of two things; the infection (GBS) or the lack of oxygen at birth. These two things would cause different results for Mason. The first being that it was the infection and was inflamed… Because it was being treated, it would improve and Mason would recover. The second being that it was due to lack of oxygen at birth (the HIE), if this were the case it would likely not improve & Mason may possibly never walk or talk or breathe on his own (this he was already working on). My body literally went numb with this news. We continued to go over some other things. A concern for Mason’s lack of reflex’s was talked about. They explained that when they checked them Mason didn’t seem to have any and that he should have been moving more after coming off of the sedation. Mason had also had a spinal tap done which came back with a higher protein level than expected. At this time we didn’t really have a clear answer as to what was going on. I think that was the hardest part. We were hoping for answers. They decided they would repeat the MRI and do an MRI of Mason’s spine in a couple of weeks, to see if there was any improvement. This was the most defeated I felt in the 5.5 weeks Mason spent in the hospital. We got back to our hotel room (which was so generously paid for by Boston Children’s) and I just threw myself down on the bed and cried. I couldn’t imagine this kind of life for my son. After Jack and I read over and over and over the notes from our meeting, we tried to remain positive and hopeful and we went back to Mason’s bed space to give him some love. I remember sobbing all over the poor guy. Tomorrow was a new day.
Mason was to start working with physical therapy to start moving more & strengthening his body. We were shown some exercises to be as hands on as possible & help as much as we could. Every time we changed his diaper we tried to do some stretches & exercises. We found out he was very ticklish & finally started to see his little legs moving. It was almost as if every time someone would say something wasn’t going as expected, Mason took two steps in the right direction.
A couple more days went by and we started facing a new problem. Mason wasn’t keeping his feeds down. We couldn’t figure out if it was just too much too fast, or if he was going through withdrawals due to coming off of all of his medications and sedation. We were told that Mason really no longer needed the NICU (amazing news), but would be transferred back to Beverly Hospital to wean off the rest of his medication and learn to eat with out a feeding tube. So, not even a week after our meeting they planned to repeat Mason’s MRI. When they did, we waited a couple days for the results and plans were made to transfer Mason. The day before he was transferred the neurology team came in to give us results. The images had improved, the white matter wasn’t as bright and they suspected it was inflammation due to the infection. This was amazing news! Mason was going to recover. His spinal MRI also came back normal, more good news. After our first meeting I don’t think anyone expected such great news after the previously devastating news. I think Jack and I knew deep in our hearts everything would be okay. We prepared ourselves for any possibilities. With this news it was finally time for Mason to graduate the NICU at Boston Children’s Hospital. We had a full circle moment with the transport team; some of the same team that brought Mason to Boston was now bringing him back to Beverly. With Mason closer to home it was time to finally leave our temporary home in Boston and sleep in our own beds. This was especially good for Jack (I had gone home a few times at the beginning of our journey because I was recovering as well).
Our journey wasn’t yet over, but Mason was out of the woods. After two weeks in Beverly, where Mason learned how to eat and didn’t need a feeding tube anymore, he finally came home. 5.5 weeks and we finally got to do what most parents do after 48 hours. We took our boy home! Those first few days, maybe weeks were so stressful and exciting. The constant worry and anxiety not having doctors by our sides if something were to go wrong. We are always on seizure watch, nothing yet thank God. But here we are almost 4 months later. Mason is 5 months old and has no known problems as of now. His development is right on track. We work with an occupational therapist weekly and are following up with neurology every few months. He’s healthy and the happiest, strongest boy I know. He gave us the biggest scare of our lives and hopefully behaves for the rest of them.
If there’s anything I wish to be taken away from my experience, the first would be to have an emergency plan. Most expecting parents come up with a birth plan, I know I did. However, we never talked about what we would do if something were to go wrong. Discuss this with your significant other or your family. Add it to your birth plan and make sure your decisions are known. The second is TRUST YOUR INSTINCTS!!!! I felt as though I was ready the day before Mason was born and even though one out of two tests determined that I wasn’t, I wish I told them to do more or refused to leave. Even though it isn’t anyone’s fault, I blamed myself for a while. Thinking to myself, I should have stayed, I should have gone to the hospital earlier and simply because I was the one who tested positive for GBS. If you’re ever expecting and test positive, make a plan for that as well. Make sure you get your antibiotics and be your own advocate as well as your baby’s. Lastly appreciate every precious moment of life, of your child’s life and everyday. You never know when it will be your last. Every day is a new blessing and miracles really do happen.
- Alyssa
The night before Mason was born, I suspected my water had been broken & I was leaking fluid & having some small contractions, so I called the hospital, packed my things up and we went in. I tested positive for GBS (Group B Strep) around the 35 week mark, which you need to have antibiotics for in labor, so I wanted to make sure I went in early enough to have them started. I was already 4cm dilated. They ran some tests. The first was positive for fluid and then they followed up with a second test that came back negative. So, I was sent home… I went home and went to bed. The next morning the contractions continued and by the afternoon were closer together, lasting longer and more painful. I called the hospital again and couldn’t get a hold of someone. I just knew it was time so off we went.
At the hospital I was brought into L&D, they started their exams & I was admitted. I was now 4.5cm dilated. They started my IV of antibiotics. At this point everything was still very normal. Jack called my mom to let her know it was time & she was on her way. My midwife, who was AMAZING by the way, started asking me about pain relief options (I was going for a natural birth) I remember asking for a heating pad & eventually the nitrous oxide.. I never even made it to the point of receiving it. This is where things start to get a little bit blurry & scary for me. If you’ve been in labor before you know you’re monitored for contractions and the baby’s heartbeat. If you’ve never experienced this, you basically have two belts that wrap around your belly with sensors hooked up to a monitor. My contractions were so bad (which I didn’t know because it was my only experience & I tend to have a higher pain tolerance) that I was given a shot to slow them down, alleviate some of the intensity and because Mason wasn’t handling them well. Shortly after this I could hear the monitor for the baby’s heartbeat slowing down. I didn’t know anything was actually wrong until the nurse had me move to my side and gave me an oxygen mask. The heartbeat was back to normal. I remember the second I had an oxygen mask on looking at Jack and asking him what was wrong.. as if he had any idea. He told me everything was okay. (Quick shout out to Jack for being so calm and keeping it together for me.) At this point I don’t know what order things are happening, but I want to describe my experience to the best of my ability. Heartbeat had slowed down and we couldn’t hear it round #2. I was on my hands & knees rocking back and forth and they picked it back up. Not even an hour later, I was 9cm dilated. Things were happening fast and this sent the baby into distress. I remember them checking the baby and putting a lead on the baby’s head to better keep track of what was going on with him. Mason’s heartbeat was lost for the third time. This was the scariest point for me and one of the last things I remember. I remember my nurse had called in a doctor prior to come check on me. She was now screaming down the hallway for a doctor. (Thank God for things would have ended very differently had she not.) They then told me they needed to get the baby out as soon as possible. I remember scribbling a signature consenting to an emergency c-section and was being rushed away before I even handed the clipboard back. In the O.R. I remember there being what seemed like a million doctors. Now normally for a c-section you’re awake with your significant other in the room. This was not the case for us. I was by myself and completely put under. Jack had gotten suited up, was made to wait and unfortunately wasn’t allowed in. The last thing I remember was one of the doctors telling me they were going to get my baby out and the anesthesiologist telling me to breathe.
Now from here on I was asleep, I’ve had my family and the doctors fill me in on what happened next. It took about 7 minutes start to finish to get Mason out. When he was born at 4:13pm he was not breathing and he did not have a heart beat. He had made a bowel movement in utero and had inhaled the fluid & meconium. The doctors worked on resuscitating him. I’ve been told it took 5 minutes to do so. For those who don’t know, the brain can only go about 6 minutes without oxygen before it starts to die. Mason is truly a miracle. Once they got him, he was rushed to the special care nursery and the doctors continued working on him. He was having seizures & could not breathe on his own though he was trying. They tried to clear his lungs and he was intubated. They knew he needed to be sent to Boston, so they called them up for transport.
While all of this was happening I was starting to wake up. Never in a million years would I have expected the news I received. I woke up in L&D and a nurse explained to me what was going on. I stayed as calm as I possibly could, which was probably the best thing I did for myself. I kept the mind set that if I stayed calm and remained positive everything would be okay. If I fell apart, I felt as though my whole world would too.
Jack, who was with the baby in the nursery, waited for transport. I don’t know what he went through, I don’t know the things he saw and I know that someday he will share every detail, but right now he’s not ready. My mom who was also with Jack and the baby at the time I was asleep has given me the information I am sharing. She left Jack and the baby to be with me knowing I couldn’t be alone. I waited patiently in a room with my mom and dad for any shred of news. I was told before Mason was transported to Boston, they would bring the baby by my room. I was texting Jack and finally got the first picture of my baby boy. I then waited what seemed like a life time to see them both. When they finally did bring him by, I remember being so scared to touch my own baby, that I waited for someone to tell me it was okay. He was on a ventilator and all wrapped up in blankets. I remember hugging Jack so tight and rubbing Mason’s feet saying, “I’m your mommy”. NOTHING in life can prepare you for a moment like this. I can’t say it enough, you never expect something like this to happen to you; especially so unexpectedly.
Mason & Daddy went off to Boston Children’s hospital to the NICU. Where he was then hooked up to monitors, an EEG to monitor brain activity and all sorts of medicines. I wasn’t there for the first 24 hours of his life and couldn’t have felt more helpless. But I knew he was in the best place in the world, with the best doctors and the best daddy. I didn’t sleep the whole night. My mom and I basically took turns closing our eyes for a few moments at a time. I could hear other babies crying in the hallway and I remember smiling for a minute being so happy for someone else and then the next minute being heartbroken for myself.
The next day the doctors talked to me about a “pass” to go see him for the day or possibly being transferred to Boston. Since I was a surgical patient, at first being transferred seemed unlikely due to insurance. The caseworker we had was amazing and fought to get me there. Some of the reasons that had to be used were not as amazing. They needed a compassionate cause and I’ll never forget the causes they had to use. Finally my transfer was approved and Beverly Hospital paid the expenses of my transport. I was finally on my way to see Mason and Jack. Jack had, of course, been keeping me updated and did not leave Mason’s side. He had sent me a video of Mason opening his eyes for the first time, tickling his feet and they even had to basically strap Mason down for being so feisty. It still breaks my heart that I wasn’t there for those moments, but I’m glad that Jack was.
When I finally got to Boston I was brought to my room and Jack came right over. I was staying at Brigham & Women’s. Mason and Jack we’re only a hospital bridge away. I wasted no time going to see my baby. Jack pushed me in my wheelchair as my mom and stepdad trailed behind. We got to the NICU and I prepared myself for heartbreak. We entered those doors and I saw Mason. I got out of my wheelchair and suddenly I felt no pain…I felt no heartbreak…only love. I couldn’t see the tubes, the leads, the monitors, or the IVs. I only saw my baby. I grabbed his hand and he grabbed mine with such a strong grip, that I wasn’t expecting. He looked at me and tried to cry. I looked back at him and with tears in my eyes I told him “You’re okay, you’re fine.” I told him to be calm. “We don’t cry. There is no crying.” I told him how I had been trying to get to him all day. I just stood there for God only knows how long, staring at him, talking to him; nurse after nurse asking me if I needed to sit down. Nothing else mattered.
Because Mason didn’t get oxygen at birth he was diagnosed with Hypoxic Ischemic Encephalopathy. Due to this, Mason was being cooled through a process called therapeutic hypothermia to help his brain. He was also being monitored for seizures on an EEG and on a ventilator to help him breathe, but he was conscious… for about the first two days. After that Jack and I went in for a visit and they explained to us that they had “taken him out of the picture”. They sedated him into what I can only describe as a medically induced coma. The machines were breathing for him & vibrating his body. I remember seeing him with no color in his skin, he was so pale. Seeing him like this was so scary. They wanted him to basically relax. Everything was working for him. Time in the NICU now feels all jumbled and mixed up. I don’t know how long he was asleep. I don’t know how many days a machine was breathing for him. I don’t remember how long he had the EEG on his head. I just know it all happened. It took me 5 days to even announce that Mason had even been born.
At some point we had a meeting with the doctors and they explained to us what was going on. Mason was septic. A word you never want to hear especially describing your newborn. He had contracted GBS and he had not gotten the oxygen he needed at birth. He had pulmonary hypertension, his lungs were constricting not letting the blood in. There seemed to be something wrong on every level and it was all due to him having the infection and the initial lack of oxygen. He had been treated with antibiotics this whole time for his infection and the only way to see what damage might have been done to his brain was to get an MRI which they couldn’t yet do. Because of the lack of oxygen and seizure activity Mason underwent the cooling process for three days. Usually when you see babies in the NICU they’re being kept warm. We had to wait for him to be warmed back up for an MRI. Days had gone by and he had been warmed but needed more support from the ventilator. They still couldn’t do an MRI and at one point he was transferred from the NICU to the surgical ICU, in case he needed to be put on an ECMO machine to help his heart pump the blood. This would have meant Mason was basically on life support. We never made it to that point, thank God. During this time in the ICU, the biggest concern was his lactic acid levels. The first number I remember was 18. A normal lactic acid level is about 2.3. So Mason’s was extremely high. He was put on some medications to help bring it down to normal. We watched for days as it came down and every time it did we celebrated. I’ll never forget one of his nurses saying, “YOU GUYS COME LOOK, WE’RE OUT OF THE RED!” A huge success. After a few days in the surgical ICU, they transferred us back across the hall to the NICU, since Mason did not need ECMO.
Back in the NICU we waited patiently for Mason to be weaned from his ventilator. A little bit each day, making sure he could handle every wean. Still waiting for an MRI, he was also being weaned off of sedation. After a while, the nurses and doctors brought up concerns of Mason not yet having any signs of movement or waking up, so he was put back on the EEG machine to check his brain activity. Later that day he began to move his lips and wiggle his toes…another big success. The next day he began to open his eyes and wake up again.. and the EEG leads were taken off after a 24 hour watch. We were now about two weeks into our NICU stay and little did we know it was about to be our best day since we got there. We finally after TWO WEEKS were able to hold our baby for the first time. Mason was given a little sponge bath, had his hair washed for the first time (we finally got to see all of his blonde fuzz). He was then handed over to his mama. I held him for hours. It was such an indescribable feeling. My heart was the fullest it had been in weeks. When I was finally done (mostly because I couldn’t be a baby hog) Mason was passed along to his daddy for the first time and my heart was full all over again. This was one of our best days.
Within the next day or two, we were told Mason was being moved to the ANEX, which was a little bit more private part of the NICU. Before he was moved we got the call that it was MRI time. We walked along Mason while he was wheeled into MRI and then Jack and I waited for what seemed like forever. After hours we finally got the call that he was done and was now going to his new bed space. He graduated from your typical NICU bed to a crib. I held him for a little while. His doctor in came for a visit and planned a time to meet and go over results. As we were talking she had told us that he was to come off of the ventilator in the next 24-48 hours. What happened next was unexpected and a scary/exciting moment. I needed to take a break from holding Mason to pump, so we called in a nurse to put Mason back in his bed. Since he was on the ventilator it took a NICU bedside nurse and a nurse that worked with ventilators to move the baby and make sure everything stayed where it’s supposed to. Mason was being put back into bed and having his ventilator tubes propped up when out came the ventilator. Not being our nurses specifically, they called for help as a precaution and the panic set in. Monitors were flashing, bells were dinging and what seemed like 10 doctors and nurses came quickly filing in. Seeing this panicked me into a breakdown and as I sobbed into Jack’s chest, one of Mason’s doctors came over to me and calmly pulled me away from Jack and told nurses and doctors to move aside so I could see him. “Look at his heart rate and blood pressure, it’s better than mine…look at his color.. he’s nice and pink… this is a good thing, he was ready to come off of the ventilator.” I felt a wave of relief come over my body. His nurses and doctors checked him out and set him up with oxygen through a nasal cpap just to assist him finally breathing on his own. Shortly after that we finally heard Mason’s cry for the very first time. A few days later, he was breathing completely on his own with no assistance.
The next day we had our meeting with neurology for Mason’s MRI results. We entered a room with one of Mason’s doctors, nurses, nurse practitioners, social worker and the neurologist. We went into this meeting super positive and ready for some good news. Unfortunately for us, we didn’t get the news we had expected. We looked at images of Mason’s brain which to us looked exactly like that, images. The neurologist explained to us what was going on in words we could barely understand. To break it down, the brain is made up of white matter & gray matter. The white matter in Mason’s brain was brighter than it should have been signifying there was an injury to his brain. He explained to us that this could either have been caused by one of two things; the infection (GBS) or the lack of oxygen at birth. These two things would cause different results for Mason. The first being that it was the infection and was inflamed… Because it was being treated, it would improve and Mason would recover. The second being that it was due to lack of oxygen at birth (the HIE), if this were the case it would likely not improve & Mason may possibly never walk or talk or breathe on his own (this he was already working on). My body literally went numb with this news. We continued to go over some other things. A concern for Mason’s lack of reflex’s was talked about. They explained that when they checked them Mason didn’t seem to have any and that he should have been moving more after coming off of the sedation. Mason had also had a spinal tap done which came back with a higher protein level than expected. At this time we didn’t really have a clear answer as to what was going on. I think that was the hardest part. We were hoping for answers. They decided they would repeat the MRI and do an MRI of Mason’s spine in a couple of weeks, to see if there was any improvement. This was the most defeated I felt in the 5.5 weeks Mason spent in the hospital. We got back to our hotel room (which was so generously paid for by Boston Children’s) and I just threw myself down on the bed and cried. I couldn’t imagine this kind of life for my son. After Jack and I read over and over and over the notes from our meeting, we tried to remain positive and hopeful and we went back to Mason’s bed space to give him some love. I remember sobbing all over the poor guy. Tomorrow was a new day.
Mason was to start working with physical therapy to start moving more & strengthening his body. We were shown some exercises to be as hands on as possible & help as much as we could. Every time we changed his diaper we tried to do some stretches & exercises. We found out he was very ticklish & finally started to see his little legs moving. It was almost as if every time someone would say something wasn’t going as expected, Mason took two steps in the right direction.
A couple more days went by and we started facing a new problem. Mason wasn’t keeping his feeds down. We couldn’t figure out if it was just too much too fast, or if he was going through withdrawals due to coming off of all of his medications and sedation. We were told that Mason really no longer needed the NICU (amazing news), but would be transferred back to Beverly Hospital to wean off the rest of his medication and learn to eat with out a feeding tube. So, not even a week after our meeting they planned to repeat Mason’s MRI. When they did, we waited a couple days for the results and plans were made to transfer Mason. The day before he was transferred the neurology team came in to give us results. The images had improved, the white matter wasn’t as bright and they suspected it was inflammation due to the infection. This was amazing news! Mason was going to recover. His spinal MRI also came back normal, more good news. After our first meeting I don’t think anyone expected such great news after the previously devastating news. I think Jack and I knew deep in our hearts everything would be okay. We prepared ourselves for any possibilities. With this news it was finally time for Mason to graduate the NICU at Boston Children’s Hospital. We had a full circle moment with the transport team; some of the same team that brought Mason to Boston was now bringing him back to Beverly. With Mason closer to home it was time to finally leave our temporary home in Boston and sleep in our own beds. This was especially good for Jack (I had gone home a few times at the beginning of our journey because I was recovering as well).
Our journey wasn’t yet over, but Mason was out of the woods. After two weeks in Beverly, where Mason learned how to eat and didn’t need a feeding tube anymore, he finally came home. 5.5 weeks and we finally got to do what most parents do after 48 hours. We took our boy home! Those first few days, maybe weeks were so stressful and exciting. The constant worry and anxiety not having doctors by our sides if something were to go wrong. We are always on seizure watch, nothing yet thank God. But here we are almost 4 months later. Mason is 5 months old and has no known problems as of now. His development is right on track. We work with an occupational therapist weekly and are following up with neurology every few months. He’s healthy and the happiest, strongest boy I know. He gave us the biggest scare of our lives and hopefully behaves for the rest of them.
If there’s anything I wish to be taken away from my experience, the first would be to have an emergency plan. Most expecting parents come up with a birth plan, I know I did. However, we never talked about what we would do if something were to go wrong. Discuss this with your significant other or your family. Add it to your birth plan and make sure your decisions are known. The second is TRUST YOUR INSTINCTS!!!! I felt as though I was ready the day before Mason was born and even though one out of two tests determined that I wasn’t, I wish I told them to do more or refused to leave. Even though it isn’t anyone’s fault, I blamed myself for a while. Thinking to myself, I should have stayed, I should have gone to the hospital earlier and simply because I was the one who tested positive for GBS. If you’re ever expecting and test positive, make a plan for that as well. Make sure you get your antibiotics and be your own advocate as well as your baby’s. Lastly appreciate every precious moment of life, of your child’s life and everyday. You never know when it will be your last. Every day is a new blessing and miracles really do happen.
- Alyssa
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.