December 2017
December 2017 changed our lives forever. We welcomed our twins into the world, had the traumatic experience of taking them to the ER and finding out they were sick, thought we were going to lose both of them multiple times and witnessed many miracles as they continued to live and recover. Every day was a new challenge. We learned so much so fast and were thrown into a world that we didn’t even know existed.
December 1 - Will and Caroline are born at 5:05 and 5:06pm. Will was 6lbs. 3oz. and Caroline was 5lbs. 13oz. They were both perfect and healthy.
December 2 - We spent the day in the hospital with our babies and they met their big brother and big sister.
December 3 - We spent another day at the hospital, holding our babies and helping them learn to eat. They were perfect and were showing no signs of being sick.
December 4 - We took the babies home in the afternoon and spent our first night all together under one roof.
December 5 - We spent the day at home, all six of us, playing and snuggling with our new babies.
December 6 - We took the babies to their check-up at the pediatrician and were sent to the ER for low temperatures, jaundice and poor feeding. Will is admitted to the PICU and Caroline spent the night on one of the hospital floors.
December 7 - Caroline is moved to the PICU in the morning. Both babies have testing done - blood cultures, EEGs, X-rays, ultrasounds and echocardiograms. Will is intubated (put on a ventilator).
December 8 - Will has an A line inserted and a few episodes of increased heart rate.
December 9 - Caroline has a pulmonary hemmorage and is intubated. She is first on a ventilator then switched to an oscillator at night.
December 10 - Neither baby is showing signs of getting better. Will has an episode of supra ventricular tachycardia (SVT) and his heart rate increased to 280 bpm. Both babies have decreased kidney function, so they are not producing enough urine and starting to swell. Will has a catheter inserted into his stomach to help draw out more fluid.
December 11 - Overnight Will stopped draining through the catheter, his kidneys are not working at all and his heart is not squeezing well. Will goes on ECMO.
December 12 - Caroline begins to be weaned from the oscillator with the goal of going back to the ventilator for respiratory support. She is starting to urinate more volume and getting fluid off. Will is getting more bloated with fluid. They find a brain bleed and take him off ECMO that night.
December 13 - Will gets a light to help him maintain his body temperature, he is on the highest level of heart medication and an oscillator for respiratory support. The doctors are making plans to switch Caroline back to a ventilator.
December 14 - Our babies are diagnosed with enterovirus.
December 15 - Will is still not urinating at all and starts dialysis. Caroline goes back to a ventilator.
December 16 - Caroline’s lungs still need time to heal. She is almost extubated accidentally overnight and has to be given more sedatives to keep her calm while intubated.
December 17 - Will’s blood pressure is low and the catheter in his stomach that is being used for dialysis continues to clog. The surgeon will not put in a dialysis catheter because Will is too unstable for surgery.
December 18 - Caroline gets an MRI. They see some bleeding but think it will go away and start to make plans to extubate her.
December 19 - Will is getting some fluid off and opened his right eye a little bit. Caroline took a paci for the first time.
December 20 - Caroline is extubated (taken off the ventilator) and is put on pressure support and oxygen through a nasal cannula. She is breathing on her own and showing signs of recovering.
December 21 - Caroline starts getting breastmilk through a feeding tube. Will opened both eyes this morning and his swelling is going down. One doctor said he was shocked at Will and he has proven everyone wrong. The dialysis is working well enough even with the wrong type of catheter but we are told that it could still take his kidneys a few weeks to recover.
December 22 - Both babies had a stable night. Will maintained a good blood pressure and continued to get fluid off.
December 23 - Will starts to wean off epinephrine (heart medication) but the dialysis catheter is causing problems and continues to get clogged.
December 24 - Dialysis is not working and the doctors think Will might have another infection. He has not shown much improvement and has everyone concerned.
December 25 - Caroline’s first Christmas and Will’s only Christmas. We got to feed Caroline with a bottle. She continues to be weaned off her respiratory support and medications.
December 26 - This was a big day for both babies. Caroline is taken off all respiratory support and is breathing completely on her own for the first time in 20 days. She feeds with a bottle every 2-3 hours and gets whatever she doesn’t take from the bottle through her feeding tube. Caroline goes to the hospital floor tonight to continue recovering and being monitored, but she is no longer critical enough to be in the PICU. The doctor (our favorite doctor) changes out Will's catheter himself since Will is not stable enough for surgery. He gets moved from the oscillator to a ventilator and no longer gets medicine to keep him paralyzed. Will starts getting a small amount of breastmilk through a feeding tube.
December 27 - Will is doing well on the ventilator and is taking some breaths on his own. He is aware, looks around, squeezes our finger and his heart function improved from being severely depressed to mildly depressed.
December 28- Caroline is weaning off pain medications and experiencing some withdrawal symptoms. She is taking full feedings from the bottle. The cardiologist said she had never seen a child with a heart as depressed as Will’s improve and she was shocked that his heart is getting better.
December 29 - Caroline is nursing for every feeding and gets her feeding tube removed. She only has a few more doses of medication before she will be completely weaned.
December 30 - Will’s heart function is slightly more depressed. Will cried for the first time since he was born.
December 31 - Caroline and Will’s due date. Plans are made for Caroline to go home the next day. The cardiologist says that most of the doctors didn't think either of them would recover and that it is a miracle that Caroline is going home and Will is still fighting.
December 2 - We spent the day in the hospital with our babies and they met their big brother and big sister.
December 3 - We spent another day at the hospital, holding our babies and helping them learn to eat. They were perfect and were showing no signs of being sick.
December 4 - We took the babies home in the afternoon and spent our first night all together under one roof.
December 5 - We spent the day at home, all six of us, playing and snuggling with our new babies.
December 6 - We took the babies to their check-up at the pediatrician and were sent to the ER for low temperatures, jaundice and poor feeding. Will is admitted to the PICU and Caroline spent the night on one of the hospital floors.
December 7 - Caroline is moved to the PICU in the morning. Both babies have testing done - blood cultures, EEGs, X-rays, ultrasounds and echocardiograms. Will is intubated (put on a ventilator).
December 8 - Will has an A line inserted and a few episodes of increased heart rate.
December 9 - Caroline has a pulmonary hemmorage and is intubated. She is first on a ventilator then switched to an oscillator at night.
December 10 - Neither baby is showing signs of getting better. Will has an episode of supra ventricular tachycardia (SVT) and his heart rate increased to 280 bpm. Both babies have decreased kidney function, so they are not producing enough urine and starting to swell. Will has a catheter inserted into his stomach to help draw out more fluid.
December 11 - Overnight Will stopped draining through the catheter, his kidneys are not working at all and his heart is not squeezing well. Will goes on ECMO.
December 12 - Caroline begins to be weaned from the oscillator with the goal of going back to the ventilator for respiratory support. She is starting to urinate more volume and getting fluid off. Will is getting more bloated with fluid. They find a brain bleed and take him off ECMO that night.
December 13 - Will gets a light to help him maintain his body temperature, he is on the highest level of heart medication and an oscillator for respiratory support. The doctors are making plans to switch Caroline back to a ventilator.
December 14 - Our babies are diagnosed with enterovirus.
December 15 - Will is still not urinating at all and starts dialysis. Caroline goes back to a ventilator.
December 16 - Caroline’s lungs still need time to heal. She is almost extubated accidentally overnight and has to be given more sedatives to keep her calm while intubated.
December 17 - Will’s blood pressure is low and the catheter in his stomach that is being used for dialysis continues to clog. The surgeon will not put in a dialysis catheter because Will is too unstable for surgery.
December 18 - Caroline gets an MRI. They see some bleeding but think it will go away and start to make plans to extubate her.
December 19 - Will is getting some fluid off and opened his right eye a little bit. Caroline took a paci for the first time.
December 20 - Caroline is extubated (taken off the ventilator) and is put on pressure support and oxygen through a nasal cannula. She is breathing on her own and showing signs of recovering.
December 21 - Caroline starts getting breastmilk through a feeding tube. Will opened both eyes this morning and his swelling is going down. One doctor said he was shocked at Will and he has proven everyone wrong. The dialysis is working well enough even with the wrong type of catheter but we are told that it could still take his kidneys a few weeks to recover.
December 22 - Both babies had a stable night. Will maintained a good blood pressure and continued to get fluid off.
December 23 - Will starts to wean off epinephrine (heart medication) but the dialysis catheter is causing problems and continues to get clogged.
December 24 - Dialysis is not working and the doctors think Will might have another infection. He has not shown much improvement and has everyone concerned.
December 25 - Caroline’s first Christmas and Will’s only Christmas. We got to feed Caroline with a bottle. She continues to be weaned off her respiratory support and medications.
December 26 - This was a big day for both babies. Caroline is taken off all respiratory support and is breathing completely on her own for the first time in 20 days. She feeds with a bottle every 2-3 hours and gets whatever she doesn’t take from the bottle through her feeding tube. Caroline goes to the hospital floor tonight to continue recovering and being monitored, but she is no longer critical enough to be in the PICU. The doctor (our favorite doctor) changes out Will's catheter himself since Will is not stable enough for surgery. He gets moved from the oscillator to a ventilator and no longer gets medicine to keep him paralyzed. Will starts getting a small amount of breastmilk through a feeding tube.
December 27 - Will is doing well on the ventilator and is taking some breaths on his own. He is aware, looks around, squeezes our finger and his heart function improved from being severely depressed to mildly depressed.
December 28- Caroline is weaning off pain medications and experiencing some withdrawal symptoms. She is taking full feedings from the bottle. The cardiologist said she had never seen a child with a heart as depressed as Will’s improve and she was shocked that his heart is getting better.
December 29 - Caroline is nursing for every feeding and gets her feeding tube removed. She only has a few more doses of medication before she will be completely weaned.
December 30 - Will’s heart function is slightly more depressed. Will cried for the first time since he was born.
December 31 - Caroline and Will’s due date. Plans are made for Caroline to go home the next day. The cardiologist says that most of the doctors didn't think either of them would recover and that it is a miracle that Caroline is going home and Will is still fighting.
January 2018
We started 2018 with one baby at home and one baby still in the hospital with a long road ahead of him. Our hearts, minds and time were torn between our three children at home and our very sick, very sweet baby boy. We didn’t know what 2018 had in store, but we had great hope that we would see Will get better and come home.
January 1 - Caroline comes home! Will starts moving his arms and looking around.
January 2 - Will's catheter is leaking and he needs a dialysis catheter inserted. He starts receiving nitric oxide for heart support.
January 3 - Will has surgery to get a dialysis catheter inserted. The doctors are concerned about his heart and think it is still very weak. The cardiologist is optimistic that his heart could still get better as more fluid comes off now that he has the correct catheter for dialysis.
January 4 - There were no complications during Will's surgery and the new dialysis catheter is working well.
January 5 - Will has a stable day and continues to get fluid off.
January 6 - Will is awake overnight night. He has to get some blood products today. He is getting full feedings through a feeding tube and he has a head ultrasound that shows no new bleeding.
January 7 - Will is doing well with his feedings. He is alert when he is awake and acts appropriately for his age.
January 8 - Will is slowly improving and starts to get slowly weaned from the ventilator, however he shows signs of infection in the dialysis fluid.
January 9 - I cut Will's nails for the first time. This may seem like a silly thing to document but there is very little we can do to help our baby, so the simple act of cutting his nails made me feel like I was doing something to take care of him. He is reacting and responding a lot more.
January 10 - The doctor starts talking to us about Will getting a trach for chronic lung issues and long term support.
January 11 - Will's heart function is still below normal but not getting worse. He is moving a lot more and most of his swelling has gone down.
January 12 - Will sucked on a paci for the first time and his nurse was so happy and surprised.
January 13 - Will's heart is showing no improvement, but not getting worse. It has seemed to level off so the doctors are working to get him on the right medications and doses to support his heart long term. There is still hope that his heart can improve overtime.
January 14 - Will is tracking, making eye contact and looking at toys. He likes his Mickey and black and white pictures.
January 15 - Will gets an EEG put on for follow-up and weans a little bit more from the ventilator. At this point we really think he is going to get better and are talking about him coming home in a few months and having a trach for a few years while his lungs grow.
January 16 - Will has a tracheotomy and the surgery goes well.
January 17 - Will is having a hard time recovering from surgery. His blood pressure is low and he is fussy.
January 18 - Mommy got to pick Will up for the first time since he came to the ER. Mommy got to help with his bath and changing out all his bedding for the first time today. He seems to be doing better and looks comfortable.
January 19 - The doctor thinks that Will has an infection. He had a fever overnight and his heart rate and respiratory rate have been high. He also has a high white blood cell count, meaning that his body is trying to fight something off.
January 20 - Will doesn't have a fever over night but he is still breathing fast.
January 21 - We love how Will looks at us and has become so aware in the past few weeks. He has an infection called pseudomonas that is often associated with having a trach.
January 22 - Will had no issues overnight. We got to hold him for the first time since December 6 and he LOVED it (and of course we did too!)! His heart is still weak and showing no real improvements.
January 23 - Will has a stable day.
January 24 - Will's EEG showed that he was no longer having seizures, so he weans off the anti-seizure medication he has been getting since December 7. He is working with physical and occupational therapy to develop range of motion and muscle control. Will still needs a lot of time to recover but we are hopeful because he is stable and making progress.
January 25 - Will got swaddled, which may not seem like a big deal but every milestone and "normal" baby activity was such a big deal to us. He looked confused at first but then fell right to sleep.
January 26 - Will was awake and looking around a lot today.
January 27 - Will is throwing up some of his feeds, so his NG tube gets changed to a NJ.
January 28 - Will is stable today.
January 29 - Will had a window of time off dialysis. He was agitated overnight and into the morning. The nephrologist is concerned that his kidneys aren't functioning yet.
January 30 - Will is better than yesterday and sleeping well. He used the physical therapy chair for the first time and liked it. He urianted today and we were hopeful that means his kidneys are starting to work.
January 31 - Will had a 8 hour break from dialysis but had no more urine, so the hopes of his kidneys working are small. He also went to have an MRI.
January 2 - Will's catheter is leaking and he needs a dialysis catheter inserted. He starts receiving nitric oxide for heart support.
January 3 - Will has surgery to get a dialysis catheter inserted. The doctors are concerned about his heart and think it is still very weak. The cardiologist is optimistic that his heart could still get better as more fluid comes off now that he has the correct catheter for dialysis.
January 4 - There were no complications during Will's surgery and the new dialysis catheter is working well.
January 5 - Will has a stable day and continues to get fluid off.
January 6 - Will is awake overnight night. He has to get some blood products today. He is getting full feedings through a feeding tube and he has a head ultrasound that shows no new bleeding.
January 7 - Will is doing well with his feedings. He is alert when he is awake and acts appropriately for his age.
January 8 - Will is slowly improving and starts to get slowly weaned from the ventilator, however he shows signs of infection in the dialysis fluid.
January 9 - I cut Will's nails for the first time. This may seem like a silly thing to document but there is very little we can do to help our baby, so the simple act of cutting his nails made me feel like I was doing something to take care of him. He is reacting and responding a lot more.
January 10 - The doctor starts talking to us about Will getting a trach for chronic lung issues and long term support.
January 11 - Will's heart function is still below normal but not getting worse. He is moving a lot more and most of his swelling has gone down.
January 12 - Will sucked on a paci for the first time and his nurse was so happy and surprised.
January 13 - Will's heart is showing no improvement, but not getting worse. It has seemed to level off so the doctors are working to get him on the right medications and doses to support his heart long term. There is still hope that his heart can improve overtime.
January 14 - Will is tracking, making eye contact and looking at toys. He likes his Mickey and black and white pictures.
January 15 - Will gets an EEG put on for follow-up and weans a little bit more from the ventilator. At this point we really think he is going to get better and are talking about him coming home in a few months and having a trach for a few years while his lungs grow.
January 16 - Will has a tracheotomy and the surgery goes well.
January 17 - Will is having a hard time recovering from surgery. His blood pressure is low and he is fussy.
January 18 - Mommy got to pick Will up for the first time since he came to the ER. Mommy got to help with his bath and changing out all his bedding for the first time today. He seems to be doing better and looks comfortable.
January 19 - The doctor thinks that Will has an infection. He had a fever overnight and his heart rate and respiratory rate have been high. He also has a high white blood cell count, meaning that his body is trying to fight something off.
January 20 - Will doesn't have a fever over night but he is still breathing fast.
January 21 - We love how Will looks at us and has become so aware in the past few weeks. He has an infection called pseudomonas that is often associated with having a trach.
January 22 - Will had no issues overnight. We got to hold him for the first time since December 6 and he LOVED it (and of course we did too!)! His heart is still weak and showing no real improvements.
January 23 - Will has a stable day.
January 24 - Will's EEG showed that he was no longer having seizures, so he weans off the anti-seizure medication he has been getting since December 7. He is working with physical and occupational therapy to develop range of motion and muscle control. Will still needs a lot of time to recover but we are hopeful because he is stable and making progress.
January 25 - Will got swaddled, which may not seem like a big deal but every milestone and "normal" baby activity was such a big deal to us. He looked confused at first but then fell right to sleep.
January 26 - Will was awake and looking around a lot today.
January 27 - Will is throwing up some of his feeds, so his NG tube gets changed to a NJ.
January 28 - Will is stable today.
January 29 - Will had a window of time off dialysis. He was agitated overnight and into the morning. The nephrologist is concerned that his kidneys aren't functioning yet.
January 30 - Will is better than yesterday and sleeping well. He used the physical therapy chair for the first time and liked it. He urianted today and we were hopeful that means his kidneys are starting to work.
January 31 - Will had a 8 hour break from dialysis but had no more urine, so the hopes of his kidneys working are small. He also went to have an MRI.
February 2018
February was full of hope. We saw Will make a lot of improvements and we were starting to think about the long term future. There were still a lot of unknowns and we thought that some type of organ transplant was in Will's future. We knew that he would be in the hospital for a long time so that he could grow and recover more, but we really felt like he was eventually coming home.
February 1 - The MRI shows that Will's brain bleed from being on ECMO was receding and not getting worse. We won't know the effect of the bleed until he is older, the neurologist suspected anything from ADD type symptoms to a more severe disability, but only time would tell. The speech therapist let Will taste some milk on his paci today and he liked it!
February 2 - Will's echocardiogram shows that his heart function decreased and no one is really sure why.
February 3 - Will is stable today.
February 4 - Will got dressed for the first time since being in the PICU, he wore his Noah's arc outfit, the first gown I bought for him after finding out we were having boy/girl twins.
February 5 - Will had another echo and his heart function is worse. The cardiologist thinks it is fluid related since Will is still on dialysis.
February 6 - We have a meeting with all of Will's doctors and come up with a plan for the short term and long term future.
February 7 - Will played in his new play gym for the first time today. He loved looking at all the toys and listening to the music.
February 8 - Will has a routine echo and they find a blood clot in the vessel going into his heart. The treatment for blood clots is using a blood thinner, but this is risky for Will since he has a brain bleed. The benefit of the blood thinner outweighs the risk, so Will is started on a heparin drip and the PICC line is moved from his leg to his arm. We are warned of the risk of blood clots, especially if they lodge in the heart or lungs.
February 9 - Will has low blood pressure consistently throughout the day.
February 10/11 - Will is fluid overloaded and continues to have low blood pressure.
February 12 - Will has an echo that shows his heart function and the blood clot are the same. He is fairly stable.
February 13-20 - This was a really good week for Will. He was stable and there were not many changes made in his treatment. He is improving with his therapies and becoming more alert everyday. He plays with us and even smiled once!
February 21/22 - The nephrologist thinks that his kidneys are most likely irreversibly damaged and they will not start to function on their own. He has to grow to get a kidney transplant but mommy or daddy could be a donor so he wouldn't have to wait on a donor list. They have a few concerns with Will getting a kidney transplant. Since his heart is weak they wondered if his heart can make it long enough or if he may need a heart transplant as well. Another concern was whether his brain bleed would disqualify him from getting a transplant. Talking about a transplant was at least a year in the future, so we tried to focus on short term goals and keeping Will stable so he could grow and get stronger.
February 23 - Will has an EEG that showed no seizures but had small spikes that could potentially turn in to seizures. He starts on a small dose of anit-seizure medication since he is at risk. He starts getting his feedings through a NG tube again and tolerates it well.
February 24 - Will gets to take 4MLs of milk from a bottle and he loved it, we thought he wanted more!
February 25 - Mommy gave him another 4MLs of milk through a bottle today and he is still doing well with NG feeds.
February 26 - Will wore his big brother's choo choo outfit today. He had an echo that shows his heart function was the same and the blood clots were gone.
February 27/28 - Will looks more swollen but no one knows why because his dialysis seems to be working well. They think maybe he has scarring from dialysis that is causing it not to work as well as it should.
February 2 - Will's echocardiogram shows that his heart function decreased and no one is really sure why.
February 3 - Will is stable today.
February 4 - Will got dressed for the first time since being in the PICU, he wore his Noah's arc outfit, the first gown I bought for him after finding out we were having boy/girl twins.
February 5 - Will had another echo and his heart function is worse. The cardiologist thinks it is fluid related since Will is still on dialysis.
February 6 - We have a meeting with all of Will's doctors and come up with a plan for the short term and long term future.
February 7 - Will played in his new play gym for the first time today. He loved looking at all the toys and listening to the music.
February 8 - Will has a routine echo and they find a blood clot in the vessel going into his heart. The treatment for blood clots is using a blood thinner, but this is risky for Will since he has a brain bleed. The benefit of the blood thinner outweighs the risk, so Will is started on a heparin drip and the PICC line is moved from his leg to his arm. We are warned of the risk of blood clots, especially if they lodge in the heart or lungs.
February 9 - Will has low blood pressure consistently throughout the day.
February 10/11 - Will is fluid overloaded and continues to have low blood pressure.
February 12 - Will has an echo that shows his heart function and the blood clot are the same. He is fairly stable.
February 13-20 - This was a really good week for Will. He was stable and there were not many changes made in his treatment. He is improving with his therapies and becoming more alert everyday. He plays with us and even smiled once!
February 21/22 - The nephrologist thinks that his kidneys are most likely irreversibly damaged and they will not start to function on their own. He has to grow to get a kidney transplant but mommy or daddy could be a donor so he wouldn't have to wait on a donor list. They have a few concerns with Will getting a kidney transplant. Since his heart is weak they wondered if his heart can make it long enough or if he may need a heart transplant as well. Another concern was whether his brain bleed would disqualify him from getting a transplant. Talking about a transplant was at least a year in the future, so we tried to focus on short term goals and keeping Will stable so he could grow and get stronger.
February 23 - Will has an EEG that showed no seizures but had small spikes that could potentially turn in to seizures. He starts on a small dose of anit-seizure medication since he is at risk. He starts getting his feedings through a NG tube again and tolerates it well.
February 24 - Will gets to take 4MLs of milk from a bottle and he loved it, we thought he wanted more!
February 25 - Mommy gave him another 4MLs of milk through a bottle today and he is still doing well with NG feeds.
February 26 - Will wore his big brother's choo choo outfit today. He had an echo that shows his heart function was the same and the blood clots were gone.
February 27/28 - Will looks more swollen but no one knows why because his dialysis seems to be working well. They think maybe he has scarring from dialysis that is causing it not to work as well as it should.
March 2018
We didn't know it at the beginning of the month, but we only had a few more days left with Will. His heart function was declining and everything started to get worse quickly.
March 1 - Will is taken off the blood thinner since the blood clots have dissolved. He didn't seem like himself and was agitated but no one knew why.
March 2 - Will seems uncomfortable. The echo shows that his cardiac function is the same but his blood pressure is low. He is taken off his feeds and given a drip of norepinephrine to help with heart function. No one knows why he is declining so they do a bunch of tests but see nothing abnormal.
March 3 - Will slept better overnight. Mommy saw his hand and foot twitching and they put an EEG on to find that he is having seizures. He is given a large dose of anti-seizure medication but they can't stop the seizures. He has an A line put in because his blood pressure is so low and needs to be monitored.
March 4 - We feel like Will's body is shutting down. He starts a low dose of epinephrine but there is still no reason for the decline over the past few days.
March 5 - Will is still having seizures and is now on two anti-seizure medications. He has been seizing on and off for over 48-hours and the seizures are coming from all over his brain as opposed to being isolated from just one area. The neurologist thinks Will may have lost oxygen to his brain triggering the seizures. We are feeling hopeless and everyone is very concerned.
March 6 - Will is taken off epi and his heart slowly stops. We were able to bring Caroline to be with him all day while we held him, kissed him and told him we loved him over and over. Will passed away in Mommy's arms a little after 9pm.
March 2 - Will seems uncomfortable. The echo shows that his cardiac function is the same but his blood pressure is low. He is taken off his feeds and given a drip of norepinephrine to help with heart function. No one knows why he is declining so they do a bunch of tests but see nothing abnormal.
March 3 - Will slept better overnight. Mommy saw his hand and foot twitching and they put an EEG on to find that he is having seizures. He is given a large dose of anti-seizure medication but they can't stop the seizures. He has an A line put in because his blood pressure is so low and needs to be monitored.
March 4 - We feel like Will's body is shutting down. He starts a low dose of epinephrine but there is still no reason for the decline over the past few days.
March 5 - Will is still having seizures and is now on two anti-seizure medications. He has been seizing on and off for over 48-hours and the seizures are coming from all over his brain as opposed to being isolated from just one area. The neurologist thinks Will may have lost oxygen to his brain triggering the seizures. We are feeling hopeless and everyone is very concerned.
March 6 - Will is taken off epi and his heart slowly stops. We were able to bring Caroline to be with him all day while we held him, kissed him and told him we loved him over and over. Will passed away in Mommy's arms a little after 9pm.