Gavin was born at 2 lbs 8 oz, 16 inches long on March 26th, 2012. A few days earlier I had received two doses of betamethasone to mature his lungs, so when he was born he was able to breathe on his own but was working kind of hard at it so he got an ET tube placed to support his breathing. He had a hard time regulating his blood pressure, so he was on a dopamine drip and also insulin to control his blood sugar. Nate was able to be with him right away, but I had to wait until the next morning when I could get out of my hospital bed. I finally got there, and he was soooo teeny, but so perfect.
For the first 4 days of Gavin's life, it was a mix of medications and tests to figure out how to stabilize him better. He had lots of visitors and got to meet a lot of family! He liked to stretch out and show off his enormous feet and hands for everybody, and he definitely stole their hearts along with ours. On Day 4, they were going to do an MRI on Gavin, because we knew he had some fluid on his brain, and Dr. A told me they had done an ultrasound of his head and were a little concerned because his brain looked a little smooth. I of course went home and consulted Dr. Google. What I found was definitely not good. That was the point I began to get very worried, but I also knew that any time you look for a diagnosis on the internet you either come up with cancer or death, so I tried to move that to the back of my mind. I got a phone call that night that the neurology team wanted to meet with us on Saturday (Day 6).
Day 5. I arrived at the hospital and checked up on Gavin, I believe he was off of most of his medications at that point but was getting a blood transfusion for something. He looked good and wiggly and got really mad when I touched him with my chilly hands. I noticed at that moment that his sleeping position looked seriously uncomfortable, but after staring at him for awhile I realized that he was sleeping in the exact position that I do. On his side with his head cranked back, arms up and leg stuck out. And he was perfectly content. I held his hand and just smiled. After a few minutes, Dr. A came in and told me things were going well and he was pretty stable, and he wanted to tell me how the MRI went. He said we could wait to discuss it until the next day when Nate was coming for our meeting, but I have no patience and told him to get on with it. He proceeded to tell me that our Gavin would not live. He had lissencephaly, he said, and it wasn't my fault. I nodded my head and stared at my tiny and helpless son, numb. I had waited so long for him, and I wasn't going to be able to keep him. I started sobbing, and Dr. A kept apologizing. Gavin woke up from his comfortable sleep and started kicking and squirming and he did not calm down until I stopped crying. I made a decision at that moment, that my baby would not feel my pain. I didn't know how long we had with him, and he was going to feel nothing but love and our happiness that he had made us parents. I told Dr. A I would come back when I could compose myself better. If my son's life was going to be short, I was not going to let him feel one ounce of our sadness, because we were so incredibly happy to have him, no matter how the tides had turned.
Dr. A called me later that evening and said Gavin's genetics testing had come back, and he had Miller-Dieker syndrome, the same thing I had found on the internet the night before and was hoping so much that my Gavin did not have it. The life expectancy was extremely short, and the quality of life was not good. It was a life expectancy of pain and suffering, and I was horrified. I help people for a living, and in this instance there was absolutely nothing I could do to help my son. Helpless. Useless. I decided to stick with the only plan of action I could come up with, just love him hard for as long as he would let me. He would not see sad tears, he did not get to feel my pain.
We did meet with the neurology team the next morning. They repeated everything Dr. A had already filled me in on. They showed us the MRI of Gavin's brain, and used a lot of different ways to explain the progression of his syndrome. Among other things, there would be seizures... profound mental retardation... loss of muscle tone... breathing difficulty... feeding difficulty... and ultimately, death. I sobbed, again.
I don't know why, but I feel the need to clarify something. Throughout our prenatal testing, we found out about certain issues the baby had. We knew that he more than likely wouldn't be the definition of "normal". We knew he would have some sort of delays, and we did.not.care. That little boy could not have been more perfect in our eyes, and always was and would have been. My little Gavin, he was made for me.
Monday, May 7, 2012
Wednesday, April 25, 2012
Gavin's Life! Part 1. Pregnancy.
I've been asked by several people about my Gavin's story. I love to share it, and it usually ends up being an hours long conversation where I bring the other person to tears. I don't try to do that, I promise, but I'm pretty open and honest about it. There's your warning.
I suppose the beginning would be a great place to start, but I'm not sure where that beginning really is. I've had several pregnancy losses over the last few years. Devastating, those little buggers. So be assured, Gavin was very very very very wanted. I spent the first few months of my pregnancy with him afraid that I would lose him too. Once we got to the 20 week mark, I finally relaxed a little and started to believe that I might actually have a baby! Around that time, we had some abnormal test results that sent us to the cities for more testing, and I wrote about those visits already so I won't bore anybody with those details. As I write this, I realize there may be others with similar problems and I want to be able to help if I am able, so if there are ever any pregnant people reading this, my abnormal test results were from a quad screen, and I tested high for a neural tube defect, which turned out to not even be an issue. I find that I can't delete my words after I speak them, and I like to blog how I talk. It often ends up in random unorganized messes, but such is my life!
Anyways. Pregnancy was pretty difficult on me, physically. I literally threw up for 6 months. I had polyhydramnios, too much amniotic fluid, and that makes every aspect of life just plain uncomfortable. At the end of my pregnancy with a 2.5 lb baby in there at 32 weeks, I was measuring at 40. I couldn't sit, I couldn't lie down, if I stood for more than half hour my legs swelled to the size of tree trunks, I just hurt all the time. Then one random Monday (32 weeks and 5 days, I believe) I went for a check-up with my normal doctor and my blood pressure was 180/112 and I was apparently having regular contractions, although I wasn't feeling them. She sent me to the hospital in the cities via the ambulance service I work for, lights and sirens, with my co-workers in charge of my care. I was pretty embarrassed about the whole thing and really just wanted to go by private vehicle, but apparently I was at a pretty significant risk for a seizure or a stroke, so my doctor was having none of that idea. I got to Riverside around 4:30, Nate got there probably around 6:30. They did several UA tests, because the triad of pre-eclampsia is hypertension, edema, and protein in the urine. My first UA came back negative, and they explained to me that sometimes when your protein gets so high it kind of cancels itself out. The second UA tested it in a different way and as they expected, it was off the charts. That's about when Nate arrived, and they informed us that our baby would be arriving that night. They gave me the choice of how I wanted to attempt to deliver, but said if we tried the normal method there was about a 50% chance that he would be in distress and we would have to go with an emergency c-section. There is nothing that scares me more than the words "emergency" and "surgery" in the same phrase. I just picture mass chaos and scalpels flying everywhere.. so I chose the planned, much more relaxed surgery. (I know this is warped thinking and that's not what actually happens.) Around 8:30 pm, we were wheeled down for surgery, my first ever.
I was given a spinal block, and then the curtain went up. A spinal block is very misleading, as it turns out it only blocks pain, and everything else is very very much felt. I could feel the cutting, I could feel the pulling and yanking and I felt when they broke my water. (I also heard it when it hit the floor! No joke!) I felt when they pulled my baby out and told us he was a boy, which we already knew. 9:08 pm. Nate went over to see him as the NICU team did their thing and I got to hear Gavin squawk a few times from across the room before he got his tube put in. I remember being so happy about that tiny little cry, because it made me believe that he was going to be okay. I knew that he was getting the best care he possibly could, and everything would be fine. That was the point I finally let myself relax, and I rolled over as well as I could and threw up. They brought Gavin over for me to see and he was all bundled up so all I could see was his face. I thought he was so so tiny, but he looked good. I cried, and he was whisked away to the NICU.
That's pretty much the end of my part of the story, because that's where Gavin's begins.
I wrote earlier about the pregnant part of this whole equation, and I do have to add that as much as it sucked, I wouldn't change it for the world. I will never ever whine or complain about being pregnant, because without the 7 months of crap, I wouldn't have gotten my Gavin. I'd go through worlds of pain for that boy, if only that would help.
I suppose the beginning would be a great place to start, but I'm not sure where that beginning really is. I've had several pregnancy losses over the last few years. Devastating, those little buggers. So be assured, Gavin was very very very very wanted. I spent the first few months of my pregnancy with him afraid that I would lose him too. Once we got to the 20 week mark, I finally relaxed a little and started to believe that I might actually have a baby! Around that time, we had some abnormal test results that sent us to the cities for more testing, and I wrote about those visits already so I won't bore anybody with those details. As I write this, I realize there may be others with similar problems and I want to be able to help if I am able, so if there are ever any pregnant people reading this, my abnormal test results were from a quad screen, and I tested high for a neural tube defect, which turned out to not even be an issue. I find that I can't delete my words after I speak them, and I like to blog how I talk. It often ends up in random unorganized messes, but such is my life!
Anyways. Pregnancy was pretty difficult on me, physically. I literally threw up for 6 months. I had polyhydramnios, too much amniotic fluid, and that makes every aspect of life just plain uncomfortable. At the end of my pregnancy with a 2.5 lb baby in there at 32 weeks, I was measuring at 40. I couldn't sit, I couldn't lie down, if I stood for more than half hour my legs swelled to the size of tree trunks, I just hurt all the time. Then one random Monday (32 weeks and 5 days, I believe) I went for a check-up with my normal doctor and my blood pressure was 180/112 and I was apparently having regular contractions, although I wasn't feeling them. She sent me to the hospital in the cities via the ambulance service I work for, lights and sirens, with my co-workers in charge of my care. I was pretty embarrassed about the whole thing and really just wanted to go by private vehicle, but apparently I was at a pretty significant risk for a seizure or a stroke, so my doctor was having none of that idea. I got to Riverside around 4:30, Nate got there probably around 6:30. They did several UA tests, because the triad of pre-eclampsia is hypertension, edema, and protein in the urine. My first UA came back negative, and they explained to me that sometimes when your protein gets so high it kind of cancels itself out. The second UA tested it in a different way and as they expected, it was off the charts. That's about when Nate arrived, and they informed us that our baby would be arriving that night. They gave me the choice of how I wanted to attempt to deliver, but said if we tried the normal method there was about a 50% chance that he would be in distress and we would have to go with an emergency c-section. There is nothing that scares me more than the words "emergency" and "surgery" in the same phrase. I just picture mass chaos and scalpels flying everywhere.. so I chose the planned, much more relaxed surgery. (I know this is warped thinking and that's not what actually happens.) Around 8:30 pm, we were wheeled down for surgery, my first ever.
I was given a spinal block, and then the curtain went up. A spinal block is very misleading, as it turns out it only blocks pain, and everything else is very very much felt. I could feel the cutting, I could feel the pulling and yanking and I felt when they broke my water. (I also heard it when it hit the floor! No joke!) I felt when they pulled my baby out and told us he was a boy, which we already knew. 9:08 pm. Nate went over to see him as the NICU team did their thing and I got to hear Gavin squawk a few times from across the room before he got his tube put in. I remember being so happy about that tiny little cry, because it made me believe that he was going to be okay. I knew that he was getting the best care he possibly could, and everything would be fine. That was the point I finally let myself relax, and I rolled over as well as I could and threw up. They brought Gavin over for me to see and he was all bundled up so all I could see was his face. I thought he was so so tiny, but he looked good. I cried, and he was whisked away to the NICU.
That's pretty much the end of my part of the story, because that's where Gavin's begins.
I wrote earlier about the pregnant part of this whole equation, and I do have to add that as much as it sucked, I wouldn't change it for the world. I will never ever whine or complain about being pregnant, because without the 7 months of crap, I wouldn't have gotten my Gavin. I'd go through worlds of pain for that boy, if only that would help.
Saturday, March 31, 2012
Thursday, March 22, 2012
Oh, baby.
So there's been no real update for a month because I haven't been to the cities for awhile due to some major miscommunication and annoyances with them! I could go on for hours, but to make this story short, I had an ECG and Level 2 ultrasound done with them yesterday with one of the docs that I don't like, and it ended about as I expected. The cardiologist seemed happy with the heart, she said the imaging wasn't great but that the ticker hole seemed better and they would just be doing an echo at birth to determine if it needs treatment or not, so that was good. Then I had my ultrasound, baby is still only around 2.5 lbs which is still pretty teeny for this stage so the lovely lady made me get the steroid shots to advance the lungs. She is having me do twice weekly ultrasounds and non-stress tests and we will see where we end up! At this point, he's not growing as well as he should be and might be slowing down, and I have about twice as much fluid as I should which equals some pretty constant pain for me. I now have pregnancy-induced hypertension and some lovely cankles going on, so I'm thinking this pregnancy isn't going to last too much longer.
I'm having a hard time with this process now, I've never been in a position where I don't know what's best for me or even for the baby, and I don't trust the people that are supposed to be making those decisions. I'm pretty angry and stressed and unsure right now, so I know this isn't very informative. If you have any questions, please feel free to ask me. Hopefully the weekend will bring some clarity. One can only hope!
I'm having a hard time with this process now, I've never been in a position where I don't know what's best for me or even for the baby, and I don't trust the people that are supposed to be making those decisions. I'm pretty angry and stressed and unsure right now, so I know this isn't very informative. If you have any questions, please feel free to ask me. Hopefully the weekend will bring some clarity. One can only hope!
Tuesday, February 21, 2012
Non-update Update
So I'm a little slow at this. :)
We had another visit at the U last week, and not much has changed which is oddly enough a good thing. It was on a Tuesday so Nate could actually tag along this time! He said it was fun to see how much things have changed. Usually my appointments down there are on Wednesdays, (that's when they schedule their "problem pregnancies") and those just don't work out easily for him. I'd rather not have both of us taking time off work all the time anyways until we really have to!
Anyways, it's difficult to really have any updates because I see different doctors every time I go there and they all have very different opinions... which is incredibly frustrating. This last doctor was kind of loopy and didn't seem to think that the one before him was spot on with everything. He doesn't think that baby will need to come extremely early- which would be great, and that I might not need a c-section if he stays in there long enough. But, baby is still small and while he is still growing, his weight is not quite what it should be. At the appointment he was about 1.5 lbs, which I was happy about but they didn't seem too impressed with.
We met with a neonatologist, and I actually liked him. He was cautiously optimistic about the heart defect and said he didn't believe that would be an immediate surgical need. We have another echo in a few weeks so he said hopefully there will be a better idea at that point. He seemed less concerned with everything than the doctors I have seen before, which is a really good thing, but I'm also not getting my hopes up because the news down there seems to change every two weeks.
They are still concerned with the fact that baby might have a "syndrome" so they are pushing me to get an amniocentesis done, and I finally agreed to- only if it's done later on. I have polyhydramnios (too much amniotic fluid) which is starting to make me uncomfortable so at some point I might give the go ahead to it just so they can suck some of that out! ;)
Quite awhile ago we made vacation plans, and those are quickly sneaking up on us! My doctors weren't so sure about it for awhile, but luckily they have given me the green light to go! Which is good, because it's a week and a half away! I'm extremely extremely excited, but seriously nervous at the same time. So I will be going to my normal doctor right before we leave to make sure everything is still fine, and for my sanity I hope it is! If not, Nate will be relaxing by an ocean for a week while I sit on the couch being very sad!
So, for an update this isn't very full of information.. but that's how our life goes these days! We really know nothing and aren't given much to go off of. I think I can share one of Nate's quotes while talking to the doctor at our last appointment, "Stop being so vague, it's really damn annoying." Ohh I love that boy.
So we have finally reached the 3rd and last leg of this cycle, and while I have not felt good the entire time, I feel like I got hit by a bus this week. I believe I have a foot somewhere under my right ribs, and have a hard time resisting the urge to flick it to get it the heck out of there. Owwww. As much as I try to be well-behaved, I feel badly for Nate having to put up with me :) Although, he gave me a cold this week so he deserves a little bit of hell for that one! Keep that poor boy in your thoughts and hope that he does not kill me. We're working on keeping our hopes up and relaxing a little bit, hopefully there will be more of an update next week! Thank you for all of your kind words up to this point, we really have some pretty awesome people in our lives, and that helps A LOT!
We had another visit at the U last week, and not much has changed which is oddly enough a good thing. It was on a Tuesday so Nate could actually tag along this time! He said it was fun to see how much things have changed. Usually my appointments down there are on Wednesdays, (that's when they schedule their "problem pregnancies") and those just don't work out easily for him. I'd rather not have both of us taking time off work all the time anyways until we really have to!
Anyways, it's difficult to really have any updates because I see different doctors every time I go there and they all have very different opinions... which is incredibly frustrating. This last doctor was kind of loopy and didn't seem to think that the one before him was spot on with everything. He doesn't think that baby will need to come extremely early- which would be great, and that I might not need a c-section if he stays in there long enough. But, baby is still small and while he is still growing, his weight is not quite what it should be. At the appointment he was about 1.5 lbs, which I was happy about but they didn't seem too impressed with.
We met with a neonatologist, and I actually liked him. He was cautiously optimistic about the heart defect and said he didn't believe that would be an immediate surgical need. We have another echo in a few weeks so he said hopefully there will be a better idea at that point. He seemed less concerned with everything than the doctors I have seen before, which is a really good thing, but I'm also not getting my hopes up because the news down there seems to change every two weeks.
They are still concerned with the fact that baby might have a "syndrome" so they are pushing me to get an amniocentesis done, and I finally agreed to- only if it's done later on. I have polyhydramnios (too much amniotic fluid) which is starting to make me uncomfortable so at some point I might give the go ahead to it just so they can suck some of that out! ;)
Quite awhile ago we made vacation plans, and those are quickly sneaking up on us! My doctors weren't so sure about it for awhile, but luckily they have given me the green light to go! Which is good, because it's a week and a half away! I'm extremely extremely excited, but seriously nervous at the same time. So I will be going to my normal doctor right before we leave to make sure everything is still fine, and for my sanity I hope it is! If not, Nate will be relaxing by an ocean for a week while I sit on the couch being very sad!
So, for an update this isn't very full of information.. but that's how our life goes these days! We really know nothing and aren't given much to go off of. I think I can share one of Nate's quotes while talking to the doctor at our last appointment, "Stop being so vague, it's really damn annoying." Ohh I love that boy.
So we have finally reached the 3rd and last leg of this cycle, and while I have not felt good the entire time, I feel like I got hit by a bus this week. I believe I have a foot somewhere under my right ribs, and have a hard time resisting the urge to flick it to get it the heck out of there. Owwww. As much as I try to be well-behaved, I feel badly for Nate having to put up with me :) Although, he gave me a cold this week so he deserves a little bit of hell for that one! Keep that poor boy in your thoughts and hope that he does not kill me. We're working on keeping our hopes up and relaxing a little bit, hopefully there will be more of an update next week! Thank you for all of your kind words up to this point, we really have some pretty awesome people in our lives, and that helps A LOT!
Thursday, February 2, 2012
Here is an email we sent out to some family members, hopefully it will help update everyone else who is interested also!
Hello Family!
I apologize for this being so horribly impersonal, but it is unfortunately the best way to reach everybody! (On that note, I am missing people so feel free to pass along!) Most of you are hopefully aware that we are expecting a little boy in May. We would just like to update you as to how everything is progressing. Kara has been seeing a specialist at the U of M in the cities for awhile now, as the little Scharmer was having some heart issues. Today we had some more extensive testing done, and are afraid the results are not as good as we would hope! At this point, it looks like little boy definitely cannot wait until May to make his appearance. He is having problems with getting adequate nutrition and is no longer growing properly, and at some point it's expected he will just stop growing. At that point whenever it may be, he will have to be delivered via c-section in the cities, which is definitely not ideal for us selfish parents. It could be a few weeks or a few months, nobody really has an answer. Once he is born, they will assess his birth defects and needs for surgery. Right now, he does have a hole in his heart called a VSD which is a pretty common heart defect and will probably eventually require a surgical fix. They don't expect that to be an immediate need, so that is a good thing. He also has extra fluid in the ventricles in his brain that will require surgery to place a shunt for drainage. Also pretty common as far as defects go. It is possible but not confirmed that he might have a tethered spinal cord, which means the bottom of his cord is attached somewhere like the tailbone. If this is the case, it will also require a surgical fix to free the cord. It is possible that our little boy has some sort of chromosomal problem or a "syndrome" but we will not know those answers until birth.
It looks like we are in for a long journey, and our little boy an even longer one. It's expected that he will be premature and will be spending time in the NICU at the U. We will be going back every 2 weeks now for growth checks, and we just hope he will keep getting bigger so he can stay in there as long as possible.
We appreciate your thoughts and well wishes, as we are stressed and tired and seriously need to get our butts in gear and get a nursery ready!
Please pass this on to people I have missed, I'm a little scatter brained today.
Love,
Nate & Kara
I apologize for this being so horribly impersonal, but it is unfortunately the best way to reach everybody! (On that note, I am missing people so feel free to pass along!) Most of you are hopefully aware that we are expecting a little boy in May. We would just like to update you as to how everything is progressing. Kara has been seeing a specialist at the U of M in the cities for awhile now, as the little Scharmer was having some heart issues. Today we had some more extensive testing done, and are afraid the results are not as good as we would hope! At this point, it looks like little boy definitely cannot wait until May to make his appearance. He is having problems with getting adequate nutrition and is no longer growing properly, and at some point it's expected he will just stop growing. At that point whenever it may be, he will have to be delivered via c-section in the cities, which is definitely not ideal for us selfish parents. It could be a few weeks or a few months, nobody really has an answer. Once he is born, they will assess his birth defects and needs for surgery. Right now, he does have a hole in his heart called a VSD which is a pretty common heart defect and will probably eventually require a surgical fix. They don't expect that to be an immediate need, so that is a good thing. He also has extra fluid in the ventricles in his brain that will require surgery to place a shunt for drainage. Also pretty common as far as defects go. It is possible but not confirmed that he might have a tethered spinal cord, which means the bottom of his cord is attached somewhere like the tailbone. If this is the case, it will also require a surgical fix to free the cord. It is possible that our little boy has some sort of chromosomal problem or a "syndrome" but we will not know those answers until birth.
It looks like we are in for a long journey, and our little boy an even longer one. It's expected that he will be premature and will be spending time in the NICU at the U. We will be going back every 2 weeks now for growth checks, and we just hope he will keep getting bigger so he can stay in there as long as possible.
We appreciate your thoughts and well wishes, as we are stressed and tired and seriously need to get our butts in gear and get a nursery ready!
Please pass this on to people I have missed, I'm a little scatter brained today.
Love,
Nate & Kara
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