After two and a half years, we've come to learn a lot more about what happened and his injuries than what we knew when we posted that original story. There are things we learned from speaking with other physicians and reading hospital records that we had not been informed of at the time that first post was written. Basically, the oxygen and/or blood that was going to Nolan's brain was cut off for a period of time causing some small injuries in several areas of his brain, he had some blood in the ventricles of his brain, he lost half of his blood, he passed through infection, and had to be resuscitated. His one minute APGAR score was a 3. (For more information on what APGAR is you can look here and here).
Though he was facing down, the way he was supposed to be, he had his head turned looking to the side with his hand up by his face, which added to the difficulty of his birth. Due to the position of his head, the vacuum was placed on his head in an unusual position which may or may not have contributed to some of issues but it did cause him to have, basically, a migraine for the first few days of his life and had to lay on a gel pillow. We could barely even touch him. We couldn't stroke his hand or his head to let him know we were there because it agitated him. We weren't even able to hold our baby until he was a week old.
He had so many tests trying to figure out exactly what happened. Once they finished treating him for meningitis he was able to come home. He spent two weeks on oxygen (with a monitor that didn't work so well and was constantly beeping at us). Shortly after he was able to come off the oxygen we started occupational therapy. We worked out a schedule of once a month until there was a need to increase it to the normal every other week or even every week if necessary.
At two and a half months old he had to have a second echo cardiogram to make sure the valve in his heart closed properly (which the nurses in the NICU explained was likely due to the face that he was technically three weeks early and that Mackay probably had the same slight issue but wasn't being checked as thoroughly so no one heard any issues). His heart was fine.
We started seeing his neurologist around the same time. The first few visits were three months apart and the last few were six months apart. The neurologist ordered another MRI to see how the maturation of his brain effected the injuries. It was so hard to put him through another test. Because he is so young, they had to sedate him so that he would stay still while they got all of the images they needed. He hated every second! They put an IV into his had and he just kept asking to "take it out". They started the sedative and it took ten minutes for him to fall asleep. The entire time he screamed and cried "take it out" and "I want to go home". Poor kid. He finally fell asleep and daddy laid him down.
They took him into the MRI and we left the room and went across the hall to wait for him. We woke up in the middle of the imaging and was crying for his daddy. He was given a second sedative, which calmed him down but didn't put him back to sleep so he was given another and finally went back to sleep so they could finish. When they brought him back he stayed asleep for a few minutes but as he started waking he kept trying to sit up and was crying. He started asking to take the IV out again. The nurse didn't want to remove it until he attempted to eat and drink something so that if he threw up she wouldn't have to start a new IV to give him fluids. He drank half a can of Gatorade and at half of a goldfish cracker so she removed the IV and put a bandaid on to keep pressure on it so it wouldn't bleed. He instantly wanted that off his hand as well.
He cheered up a little but was still quite groggy. The nurse told us he'd be sleepy and a little dopey the rest of the day and told us to watch him to make sure he didn't fall or walk into something and get hurt. He slept the whole way home and took an hour and a half nap when we got home. We woke him at 11:30 for lunch. It took some time for him to wake up and when we asked if he had been to the doctor (the nurse said one of the sedatives could cause some amnesia so we wanted to see what he remembered) and he started singing "doctor said... no more monkeys jumping on the bed". Once he really woke up, he was wide awake. He didn't take his normal nap and seemed to be extra wired.
We got the results of the MRI and were able to compare them with the original images. He still has a tiny scar, but it's smaller than the original injury. He has a few tiny spots where the tissue is still dead, but overall his brain looked like that of a normal two year old. It was great news. This officially ends our neurologist visits. The neurologist printed out a summary from today's appointment...
Seriously... happy day! His brain looks excellent! We have been so happy today. He's been through quite a bit but he's a trooper. We are so glad he is ours and can't imagine what life would be without him. He was definitely meant to be here and to be ours... and definitely meant to be a twin.
No matter how normal he has seemed, it's always been in the back of our minds that something could be off or could change. It's so nice to have seen the pictures and see how normal his brain looks. It's a huge sigh of relief and we can definitely breathe a little easier knowing for certain that we no longer need to worry about the effects of that traumatic day.
We are so grateful for all of the prayers offered on Nolan's and our behalf. We know that these prayers have been incredibly helpful in this journey and have helped his healing in more ways than we can imagine.
Though he was facing down, the way he was supposed to be, he had his head turned looking to the side with his hand up by his face, which added to the difficulty of his birth. Due to the position of his head, the vacuum was placed on his head in an unusual position which may or may not have contributed to some of issues but it did cause him to have, basically, a migraine for the first few days of his life and had to lay on a gel pillow. We could barely even touch him. We couldn't stroke his hand or his head to let him know we were there because it agitated him. We weren't even able to hold our baby until he was a week old.
He had so many tests trying to figure out exactly what happened. Once they finished treating him for meningitis he was able to come home. He spent two weeks on oxygen (with a monitor that didn't work so well and was constantly beeping at us). Shortly after he was able to come off the oxygen we started occupational therapy. We worked out a schedule of once a month until there was a need to increase it to the normal every other week or even every week if necessary.
At two and a half months old he had to have a second echo cardiogram to make sure the valve in his heart closed properly (which the nurses in the NICU explained was likely due to the face that he was technically three weeks early and that Mackay probably had the same slight issue but wasn't being checked as thoroughly so no one heard any issues). His heart was fine.
We started seeing his neurologist around the same time. The first few visits were three months apart and the last few were six months apart. The neurologist ordered another MRI to see how the maturation of his brain effected the injuries. It was so hard to put him through another test. Because he is so young, they had to sedate him so that he would stay still while they got all of the images they needed. He hated every second! They put an IV into his had and he just kept asking to "take it out". They started the sedative and it took ten minutes for him to fall asleep. The entire time he screamed and cried "take it out" and "I want to go home". Poor kid. He finally fell asleep and daddy laid him down.
They took him into the MRI and we left the room and went across the hall to wait for him. We woke up in the middle of the imaging and was crying for his daddy. He was given a second sedative, which calmed him down but didn't put him back to sleep so he was given another and finally went back to sleep so they could finish. When they brought him back he stayed asleep for a few minutes but as he started waking he kept trying to sit up and was crying. He started asking to take the IV out again. The nurse didn't want to remove it until he attempted to eat and drink something so that if he threw up she wouldn't have to start a new IV to give him fluids. He drank half a can of Gatorade and at half of a goldfish cracker so she removed the IV and put a bandaid on to keep pressure on it so it wouldn't bleed. He instantly wanted that off his hand as well.
He cheered up a little but was still quite groggy. The nurse told us he'd be sleepy and a little dopey the rest of the day and told us to watch him to make sure he didn't fall or walk into something and get hurt. He slept the whole way home and took an hour and a half nap when we got home. We woke him at 11:30 for lunch. It took some time for him to wake up and when we asked if he had been to the doctor (the nurse said one of the sedatives could cause some amnesia so we wanted to see what he remembered) and he started singing "doctor said... no more monkeys jumping on the bed". Once he really woke up, he was wide awake. He didn't take his normal nap and seemed to be extra wired.
We got the results of the MRI and were able to compare them with the original images. He still has a tiny scar, but it's smaller than the original injury. He has a few tiny spots where the tissue is still dead, but overall his brain looked like that of a normal two year old. It was great news. This officially ends our neurologist visits. The neurologist printed out a summary from today's appointment...
Seriously... happy day! His brain looks excellent! We have been so happy today. He's been through quite a bit but he's a trooper. We are so glad he is ours and can't imagine what life would be without him. He was definitely meant to be here and to be ours... and definitely meant to be a twin.
No matter how normal he has seemed, it's always been in the back of our minds that something could be off or could change. It's so nice to have seen the pictures and see how normal his brain looks. It's a huge sigh of relief and we can definitely breathe a little easier knowing for certain that we no longer need to worry about the effects of that traumatic day.
We are so grateful for all of the prayers offered on Nolan's and our behalf. We know that these prayers have been incredibly helpful in this journey and have helped his healing in more ways than we can imagine.
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