Today I had someone call me from Akron Childrens in regards to Jacob. I was told that there is a new radiologist to their hospital who has been to some pretty notable hospitals around the country. She wanted to do a case report on Jacob's MRI history. The radiologist stated that he was a rare case and you do not see many cases where they have a fetal MRI. It is even more uncommon to have two MRI's while in utero. She thought it was very interesting how the brain changed and developed so much between imagings. The radiologist wants to do a case report so she can teach others across the country about fetal brain development and about the changes that can take place during this time. She will not include our names but will discuss medical history behind Jacob's case.
Shawn and I discussed this situation and will let them go ahead with the report. It only validates to me that this is a rare case as we have been told previously by both Akron and OSU. Also, if it gives other professionals a chance to learn from this, than more knowledge on it the better. Who knows, maybe one day down the road it will help another family gain an understanding on their unborn child. Maybe it will give other parents answers that we were desperately looking for during our pregnancy.
Wednesday, October 29, 2014
Saturday, October 25, 2014
Another weekend..
I woke up today realizing it was, yet again, another Saturday. I was supposed to return back to work this past Thursday. I recently had to make the decision to take off of work for the rest of the school year. This was a difficult choice for me considering I enjoy working and my career. I have worked since I was 14. I like to keep busy and working makes me feel as if I am accomplishing something in my day. I also enjoy the interaction with my coworkers at work. This within itself has been hard to let go of for the time being. The weeks seem to be coming and going and it is starting to get a little harder realizing that Jacob is not making much progression developmentally. As a parent you look forward to watching your child grow, develop, explore their world. With Jacob it is as if time is standing still. We have a couple good days where he is calmer, eating decent, and sleeping decent. Then we have several more days where you feel that he took two steps back. He is fussy, more rigid with his muscle tone, and sleeping worse. It has been getting harder going out to and seeing families with little ones. I tear up when I see siblings playing with each other in a shopping cart or at a restaurant. Or something as simple as seeing mothers carrying their babies around in a sling makes me emotional because Jacob cannot tolerate one with his tone. Jacob's life is so different. He may never reach the milestones that some of these babies have already reached at 6, 7, 8 months old. It hurts more when I think of Dominic and how he will never be able to run around, wrestle, or ride bikes with his little brother like many other siblings do. I guess with the warmer weather leaving us and the dreary fall approaching it has shifted my moods with everything. Don't get me wrong, I am thankful that we are fortunate to have Jacob as our son, it has just been difficult accepting this new way of life.
Thursday, October 23, 2014
He's finally here!
Starting where I left off from... Jacob arrived on May 10, 2014. He was breathing on his own and scored high on his 1 and 5 minute Apgar tests. Life was looking good for him! That night Jacob was admitted to the NICU due to feeding issues. He was unable to feed on his own and was hooked up to a feeding tube the following morning. The next two weeks were very tiring as Shawn and I tried to balance our time between home with Dominic and the NICU with Jacob. Each day Jacob seemed to eat a little more on his own, but each day it seemed as if they kept bumping up the minimum he had to eat. After the 3rd day in the NICU Jacob was placed under the bilirubin lights for the next 3 days due to jaundice. I hated seeing him hooked up to so many monitors, lights, and now sporting foam goggles over his eyes. Our days with Jacob in the NICU consisted of feeding him every 3 hours, holding him, learning new routines for him, and starring at his monitor. Oh how I hated watching that monitor. Besides his feeding, Jacob was doing well with everything else. They decided to allow us to take Jacob home as long as we were okay feeding him with the feeding tube and being able to change in and out his tube when needed. By the end of our stay at the NICU we became experts with this. The whole process took an hour from start to finish with the feeding tube. We were learning a whole new way of life for now when it came to feeding. We were happy to know we would be taking Jacob home so soon. I give credit to all of those parents who endure weeks, months, and some even over a year with their baby in the NICU. Having Jacob there for only 11 days seemed like an eternity and was very draining on Shawn and I, while trying to maintain normalcy at home for Dominic. Jacob came home on May 21st.
The next couple of weeks were filled with home health care visits with the nurse and other doctor appointments. Jacob was gaining weight at a rapid rate. Finally, on the day of Jacob's original due date, May 30th, he ate his whole first bottle on his own! From there on out he started to become consistent at taking his bottles. It was as if he knew when he was supposed to be born and decided to eat on his own from there on out. It was such a great milestone for Jacob to accomplish! We were able to take his feeding tube out on June 10th for good!! He has not had the tube back in since. As soon as he tackled one hurdle, there seemed to be about 5 more on the horizon. The next few months were filled with home visits, doctor appointments, specialist meetings, therapies, etc. We met with the pediatrician, neurologist, audiologist, gastroenterologist, physiatrist, physical therapist, occupational therapist, home health care, and county disability workers over various issues and concerns.
The first obstacle was the screaming. For almost 3 full months Jacob screamed for 6-8 hours a day. He went through a series of doctor visits and tests to figure out what the cause of the screaming was. We never really did find an answer but think it may have been a combination of formula sensitivity and neuro irritability. When babies have neuro issues they have a high pitched scream instead of a cry. This definitely proved to be Jacob's case. Jacob also did not like car rides. Many parents take their babies for a ride in the car to settle them down. Not us, we dreaded it! Jacob would scream from the moment you put him in the car seat up to the moment you took him out. When we got to our destination he would be beat red, dripping sweat, and still screaming! Aside from this, we were also still feeding him every 3 hours even at 4 months old. For the first 2 months we lived by an alarm. Every 3 hours we had to feed him. The worst was during the nights when Jacob would be sleeping, we would have to wake him to feed. And remind you, it took an hour to feed him. We were pretty sleep deprived back than, than we are now. Once we were allowed to stop waking him to feed, he became used to that routine internally I think. And although he was gaining weight well, he did not take in enough formula to fill himself up. Even now at almost 6 months he still has days, and nights, where he is on a 3 hour schedule. Feeding will continue to be a challenge. It is safe to say that Jacob is consistently inconsistent. As hard as it still is right now, it was beyond horrible during those first few months of his life.
We were due to check in with the neurologist once a month after Jacob was born. The first 2 months were great visits. The neurologist felt he was doing everything he should be doing and was on track to lead a somewhat normal life. He even told us to set up a college fund for Jacob. I had my reservations though. I was concerned by two months that he was still not tracking things and did not make eye contact. People kept telling me to give him time, he was born early. My gut instinct knew it wasn't good. He also had very tight and rigid muscle tone, along with an overactive startle reflex. When we went for Jacob's 3 month visit the neurologist became more concerned with all the things I just stated. He scheduled Jacob for a MRI and a 1 hour EEG. The EEG came back normal, which meant no seizure activity. The MRI on the other hand was anything but normal.
We had to wait a week to hear the results of Jacob 's MRI. We went in to the appointment optimistic but left there shattered, once again. The neurologist when on to explain that Jacob had Polymicrogyria, or PMG. This means that the outermost part of the brain did not develop properly and created many small folds instead of the normal folds. There was some sort of disruption in the cell migration of the brain. It was either an infection, vascular event, or something genetically that caused this. And to top it off, Jacob has the most sever form of this disorder. We were told we could expect him not to be able to walk, talk, see, hear, think, seizures, etc. Basically every function could be affected. The neurologist also confirmed the diagnosis of Microcephaly, which means he has a small head and the brain is smaller. When we thought before that things couldn't get any worse, they just did. To this day I still have a hard time believing this will be the fate of our son.
As the weeks went by Jacob's muscle tone was getting worse. He was constantly arching, flexing, and overall very rigid and stiff. This was impeding on his daily activities, sleeping, and overall well being. He never seemed comfortable or content. After our 4 month visit with the neurologist he set us up with a 24 hour EEG to see if he was having seizures that might be leading to some of his issues. The results of this test came back negative showing no seizure activity. They were however able to see how restless Jacob was and prescribed him a medication to help ease his tone. This only was beneficial for a week. After a few weeks we consulted with a physiatrist about his tone. We left with no real answers. When we met with the neurologist for his 5 month check up, we expressed our concern again about Jacob's tone. He now prescribed his an additional medicine for his tone. Jacob has been on this med for about 3 weeks now and he is the calmest he has been since birth. There has also been a dramatic reduction in his screaming episodes. Things are by no mean perfect with the meds, but better than he was previously. We still struggle with him sleeping at night and laying him down for naps. He only seems to be comfortable when someone is holding him.
Although it seems as if I wrote a lot about these past 5 months, there are many details I left out. Jacob currently still has monthly check ups with the neurologist. He is attending aquatic therapy weekly and loves being in the warm water. He also receives in home physical therapy once a week. He is not the biggest fan of this. Developmentally Jacob has not accomplished a lot. He still does not make much eye contact, does not track many objects, cannot support his head, cannot sit, cannot push up on his arms when on his belly, and does not roll. He can smile, coo, and roll on his side from time to time. His little gummy smile and giggles keep us going :) Die to his brain abnormalities they expect him to have seizures occurring sooner rather than later. They do not expect him to develop at a normal pace and feel he will never walk or talk. They also feel his cognitive skills will be severely impaired and his life expectancy will be shortened. The neurologist cannot give a specific life expectancy prognosis. Overall, it will really be Jacob in the end who will dictate what he can and cannot do.
With all that we have encountered so far in Jacob 's short life, we do know that we love him and he can feel our love. He smiles and coos every time his big brother Dominic is around and enjoys being around his family, grandparents, and relatives. We will give Jacob every opportunity we can to grow, develop, and enjoy the wonderful things this life has to offer him.
The next couple of weeks were filled with home health care visits with the nurse and other doctor appointments. Jacob was gaining weight at a rapid rate. Finally, on the day of Jacob's original due date, May 30th, he ate his whole first bottle on his own! From there on out he started to become consistent at taking his bottles. It was as if he knew when he was supposed to be born and decided to eat on his own from there on out. It was such a great milestone for Jacob to accomplish! We were able to take his feeding tube out on June 10th for good!! He has not had the tube back in since. As soon as he tackled one hurdle, there seemed to be about 5 more on the horizon. The next few months were filled with home visits, doctor appointments, specialist meetings, therapies, etc. We met with the pediatrician, neurologist, audiologist, gastroenterologist, physiatrist, physical therapist, occupational therapist, home health care, and county disability workers over various issues and concerns.
The first obstacle was the screaming. For almost 3 full months Jacob screamed for 6-8 hours a day. He went through a series of doctor visits and tests to figure out what the cause of the screaming was. We never really did find an answer but think it may have been a combination of formula sensitivity and neuro irritability. When babies have neuro issues they have a high pitched scream instead of a cry. This definitely proved to be Jacob's case. Jacob also did not like car rides. Many parents take their babies for a ride in the car to settle them down. Not us, we dreaded it! Jacob would scream from the moment you put him in the car seat up to the moment you took him out. When we got to our destination he would be beat red, dripping sweat, and still screaming! Aside from this, we were also still feeding him every 3 hours even at 4 months old. For the first 2 months we lived by an alarm. Every 3 hours we had to feed him. The worst was during the nights when Jacob would be sleeping, we would have to wake him to feed. And remind you, it took an hour to feed him. We were pretty sleep deprived back than, than we are now. Once we were allowed to stop waking him to feed, he became used to that routine internally I think. And although he was gaining weight well, he did not take in enough formula to fill himself up. Even now at almost 6 months he still has days, and nights, where he is on a 3 hour schedule. Feeding will continue to be a challenge. It is safe to say that Jacob is consistently inconsistent. As hard as it still is right now, it was beyond horrible during those first few months of his life.
We were due to check in with the neurologist once a month after Jacob was born. The first 2 months were great visits. The neurologist felt he was doing everything he should be doing and was on track to lead a somewhat normal life. He even told us to set up a college fund for Jacob. I had my reservations though. I was concerned by two months that he was still not tracking things and did not make eye contact. People kept telling me to give him time, he was born early. My gut instinct knew it wasn't good. He also had very tight and rigid muscle tone, along with an overactive startle reflex. When we went for Jacob's 3 month visit the neurologist became more concerned with all the things I just stated. He scheduled Jacob for a MRI and a 1 hour EEG. The EEG came back normal, which meant no seizure activity. The MRI on the other hand was anything but normal.
We had to wait a week to hear the results of Jacob 's MRI. We went in to the appointment optimistic but left there shattered, once again. The neurologist when on to explain that Jacob had Polymicrogyria, or PMG. This means that the outermost part of the brain did not develop properly and created many small folds instead of the normal folds. There was some sort of disruption in the cell migration of the brain. It was either an infection, vascular event, or something genetically that caused this. And to top it off, Jacob has the most sever form of this disorder. We were told we could expect him not to be able to walk, talk, see, hear, think, seizures, etc. Basically every function could be affected. The neurologist also confirmed the diagnosis of Microcephaly, which means he has a small head and the brain is smaller. When we thought before that things couldn't get any worse, they just did. To this day I still have a hard time believing this will be the fate of our son.
As the weeks went by Jacob's muscle tone was getting worse. He was constantly arching, flexing, and overall very rigid and stiff. This was impeding on his daily activities, sleeping, and overall well being. He never seemed comfortable or content. After our 4 month visit with the neurologist he set us up with a 24 hour EEG to see if he was having seizures that might be leading to some of his issues. The results of this test came back negative showing no seizure activity. They were however able to see how restless Jacob was and prescribed him a medication to help ease his tone. This only was beneficial for a week. After a few weeks we consulted with a physiatrist about his tone. We left with no real answers. When we met with the neurologist for his 5 month check up, we expressed our concern again about Jacob's tone. He now prescribed his an additional medicine for his tone. Jacob has been on this med for about 3 weeks now and he is the calmest he has been since birth. There has also been a dramatic reduction in his screaming episodes. Things are by no mean perfect with the meds, but better than he was previously. We still struggle with him sleeping at night and laying him down for naps. He only seems to be comfortable when someone is holding him.
Although it seems as if I wrote a lot about these past 5 months, there are many details I left out. Jacob currently still has monthly check ups with the neurologist. He is attending aquatic therapy weekly and loves being in the warm water. He also receives in home physical therapy once a week. He is not the biggest fan of this. Developmentally Jacob has not accomplished a lot. He still does not make much eye contact, does not track many objects, cannot support his head, cannot sit, cannot push up on his arms when on his belly, and does not roll. He can smile, coo, and roll on his side from time to time. His little gummy smile and giggles keep us going :) Die to his brain abnormalities they expect him to have seizures occurring sooner rather than later. They do not expect him to develop at a normal pace and feel he will never walk or talk. They also feel his cognitive skills will be severely impaired and his life expectancy will be shortened. The neurologist cannot give a specific life expectancy prognosis. Overall, it will really be Jacob in the end who will dictate what he can and cannot do.
With all that we have encountered so far in Jacob 's short life, we do know that we love him and he can feel our love. He smiles and coos every time his big brother Dominic is around and enjoys being around his family, grandparents, and relatives. We will give Jacob every opportunity we can to grow, develop, and enjoy the wonderful things this life has to offer him.
Wednesday, October 22, 2014
Let's start from the beginning
I have thought about it for several months now to start a blog about our journey with our son, Jacob. What better day then today to start? I felt this would be the best way to keep our family and friends up to date on Jacob's life and our journey with our son. As the weeks go by, I feel it is almost impossible to keep everyone updated on the happenings of Jacob, so I hope you find this a great way to stay in the loop. And one thing to note - I am not the most grammatically correct person so don't judge my writing. I am a math person, not a literature person. So here it is..
Jacob was born on May 10, 2014. Our story with our son started way before that time though. Back in January during our 20 week gender scan the doctor noted what was to be a club foot on the ultrasound. We were to return in 4 weeks for a follow up ultrasound. At our 24 week scan the doctor felt that there was still indication that our son may have a club foot. We were referred to Akron Children's Maternal Fetal Medicine. We were a bit nervous about the thought of the possible diagnosis, but looking back, a club foot would have been a godsend. We met with the MFM doctor mid-February for an ultrasound. During this visit we were relieved to find out that Jacob did not have a clubfoot, but left way more worried than when we originally arrived at their office. During the ultrasound the doctor noticed what looked like several brain abnormalities. We were referred to Akron Children's main campus for a follow up ultrasound.
The next week was misery as we waited for our appointment day to arrive. Finally the day came during late February to have yet another ultrasound, but this time at Akron's main campus for MFM. During the ultrasound we were nervous as there was not a lot of discussion that went on between Shawn and I, and the nurse. When the doctor came in to review the images there were 3 main areas of the brain she was concerned about. At this point I think our hearts sank and it felt as if someone had knocked the wind right out of me. How could this be happening? How could something be wrong? I have done everything by the book, and then some, during this pregnancy up to this point. We were asked to sit down and meet with their palliative care team as we awaited an MRI that they set up for us that afternoon. That morning was a bit of a blur sitting down with palliative care. Right when they walked in to the room they handed us a box of Kleenex and I knew this was not going to be good. They discussed their purpose, services they provide, and what their role would be during this "journey" with our unborn son. Later that day I had the fetal MRI. We were to meet a week later with a variety of doctors to discuss the results. Again, the next week drug on as we awaited to hear the fate of our son.
The day finally came to meet with back at Akron Childrens MFM to discuss Jacob's MRI. It was a bit overwhelming as Shawn and I walked in to the conference room. There was the neurologist, neonatologist, perinatologist, nurse, social worker, and palliative care team. I never knew what half of these people even did before that day. The neurologist got right to the point and showed us the scans of Jacob's brain. There is one image I think has been burned into my head permanently from that day. He showed us a picture of Jacob's brain alongside a typical fetus brain. Nearly 40% of Jacob's brain had not grown and was essentially missing. He went on to explain the areas effected and what the potential outcomes would be - not able to walk, talk, see, hear, think, etc. It was an endless list of horrible possibilities. Shawn and I walked out of that meeting in utter shock and disbelief. A piece of my heart died that day hearing those results.
The following weeks were filled with countless doctor appointments and tests trying to help them find a cause for this. They all resulted in no answers. We decided to get a second opinion at The Ohio State University hoping to receive different news. Unfortunately, this was not the case. They too agreed that this was a rare case they had not seen before and were unable to figure out what the cause might have been. this all just did not make sense to Shawn and I, just surreal. It became harder each week to carry on at work and in the public as people commented and held conversations about how wonderful it will be to have another child, another boy, a playmate for our older son. I would carry on with a smile going along with the conversations just knowing in the back of my mind that life was going to be so much different than that.
Fast forward to 35 weeks. We had a follow up MRI. To everyone's surprise, Jacob's brain had grown and almost completely filled the skull. The neurologist at this point had a different tune in his voice and felt Jacob may live a somewhat normal life. Shawn and I were a bit guarded with this prediction though knowing what had happened earlier in the development of his brain. At 36 weeks the MFM doctor noticed that Jacob's overall growth had slowed tremendously, especially his head circumference. She stated that I now had IUGR, inter uterine growth restriction. This basically means that the necessary nutrients were not being passed along to Jacob through the umbilical cord. Again, another curve ball thrown our way. When we met with the doctor the following week, at 37 weeks, she noticed the same trend and urged delivery to be induced that weekend. If not, there was a good chance that Jacob would not survive the remaining 3 weeks in utero.
At exactly 37 weeks I was admitted to the hospital for induction. To spare all the details, it was a crazy and chaotic morning and afternoon with several major decisions that needed to be made. Finally in the evening it was decided that I would need to have a c-section. Jacob Alexander was finally born at 8:15pm at 4lbs. 9 oz. and 17 inches long. He was breathing on his own and was a little fighter. Shawn and I were thrilled that Jacob was alive and well, and that this phase of the journey was finally over.
Jacob was born on May 10, 2014. Our story with our son started way before that time though. Back in January during our 20 week gender scan the doctor noted what was to be a club foot on the ultrasound. We were to return in 4 weeks for a follow up ultrasound. At our 24 week scan the doctor felt that there was still indication that our son may have a club foot. We were referred to Akron Children's Maternal Fetal Medicine. We were a bit nervous about the thought of the possible diagnosis, but looking back, a club foot would have been a godsend. We met with the MFM doctor mid-February for an ultrasound. During this visit we were relieved to find out that Jacob did not have a clubfoot, but left way more worried than when we originally arrived at their office. During the ultrasound the doctor noticed what looked like several brain abnormalities. We were referred to Akron Children's main campus for a follow up ultrasound.
The next week was misery as we waited for our appointment day to arrive. Finally the day came during late February to have yet another ultrasound, but this time at Akron's main campus for MFM. During the ultrasound we were nervous as there was not a lot of discussion that went on between Shawn and I, and the nurse. When the doctor came in to review the images there were 3 main areas of the brain she was concerned about. At this point I think our hearts sank and it felt as if someone had knocked the wind right out of me. How could this be happening? How could something be wrong? I have done everything by the book, and then some, during this pregnancy up to this point. We were asked to sit down and meet with their palliative care team as we awaited an MRI that they set up for us that afternoon. That morning was a bit of a blur sitting down with palliative care. Right when they walked in to the room they handed us a box of Kleenex and I knew this was not going to be good. They discussed their purpose, services they provide, and what their role would be during this "journey" with our unborn son. Later that day I had the fetal MRI. We were to meet a week later with a variety of doctors to discuss the results. Again, the next week drug on as we awaited to hear the fate of our son.
The day finally came to meet with back at Akron Childrens MFM to discuss Jacob's MRI. It was a bit overwhelming as Shawn and I walked in to the conference room. There was the neurologist, neonatologist, perinatologist, nurse, social worker, and palliative care team. I never knew what half of these people even did before that day. The neurologist got right to the point and showed us the scans of Jacob's brain. There is one image I think has been burned into my head permanently from that day. He showed us a picture of Jacob's brain alongside a typical fetus brain. Nearly 40% of Jacob's brain had not grown and was essentially missing. He went on to explain the areas effected and what the potential outcomes would be - not able to walk, talk, see, hear, think, etc. It was an endless list of horrible possibilities. Shawn and I walked out of that meeting in utter shock and disbelief. A piece of my heart died that day hearing those results.
The following weeks were filled with countless doctor appointments and tests trying to help them find a cause for this. They all resulted in no answers. We decided to get a second opinion at The Ohio State University hoping to receive different news. Unfortunately, this was not the case. They too agreed that this was a rare case they had not seen before and were unable to figure out what the cause might have been. this all just did not make sense to Shawn and I, just surreal. It became harder each week to carry on at work and in the public as people commented and held conversations about how wonderful it will be to have another child, another boy, a playmate for our older son. I would carry on with a smile going along with the conversations just knowing in the back of my mind that life was going to be so much different than that.
Fast forward to 35 weeks. We had a follow up MRI. To everyone's surprise, Jacob's brain had grown and almost completely filled the skull. The neurologist at this point had a different tune in his voice and felt Jacob may live a somewhat normal life. Shawn and I were a bit guarded with this prediction though knowing what had happened earlier in the development of his brain. At 36 weeks the MFM doctor noticed that Jacob's overall growth had slowed tremendously, especially his head circumference. She stated that I now had IUGR, inter uterine growth restriction. This basically means that the necessary nutrients were not being passed along to Jacob through the umbilical cord. Again, another curve ball thrown our way. When we met with the doctor the following week, at 37 weeks, she noticed the same trend and urged delivery to be induced that weekend. If not, there was a good chance that Jacob would not survive the remaining 3 weeks in utero.
At exactly 37 weeks I was admitted to the hospital for induction. To spare all the details, it was a crazy and chaotic morning and afternoon with several major decisions that needed to be made. Finally in the evening it was decided that I would need to have a c-section. Jacob Alexander was finally born at 8:15pm at 4lbs. 9 oz. and 17 inches long. He was breathing on his own and was a little fighter. Shawn and I were thrilled that Jacob was alive and well, and that this phase of the journey was finally over.
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