I forgot to mention in the last post that with this disease, if come to find out he does have it and he happens to get ANY kind of bug, even a little cold, runny nose etc... it will attack his respitory system very very quickly.
So the doctor told me he can not be around too many people and absolutely no other kids and to be constantly sanatizing/washing hands and not letting people kiss on him and what not.
How we are going to do this... I don't have a clue. It's the holidays and that means lot's of family stuff and it is Milo's first christmas and he won't be able to be around anyone?!!! UGH!!!
Wednesday, November 30, 2011
Tuesday, November 29, 2011
SMARD
I just put Milo down to bed, tonight is the first night at home on oxygen support so I am hoping it will help him through out the night.
Especially since it took me a flippin hour just to get the damn thing in his nose with out waking him up.
Milo and I went to his nueromuscular appt yesterday with Dr. Sokanju at Primary Children's.
She examined him, asked many questions about family history, his history etc.. then came the fun part.
She did two separate tests on him, the first one was sending shocks through certain nerves to see reaction time with his nerves.
Before she did the shocks, she shocked me to show me what he would be feeling through out the process.
The first shock (the smaller one) was not bad, the second one (highest one) was pretty irritating but pretty much painless so that was good to know.
The second test she did was sticking needles into his muscles and nerves, moving the needle around and listening to noise disturbances and things that indicate nerve damage.
The appointment overall was pretty stressful because she is poking and shocking him and at the same time she was trying to explain things to me about what she was doing, why she was doing it and what I should be listening and looking for --Which was great, but I wasn't able to let very much info sink in at the time, not with Milo screaming and turning purple on us from crying so hard for so long.
She left the room for a minute after she finished the testing and came back with some possibly really, really bad news.
She came in the room and said she had called another researching neurologist who does most of the diagnosing in these familiar cases and they both agreed that it is a high possibility that he could have S.M.A.R.D
I had no idea what she was talking about, never heard the term in my life.
Before I could ask any questions she let me know that he DOES have phrenic nerve injury to his c5 nerve, of course a plexus injury from labor.
Someone finally listened to what I had been saying all along!!!!
She explained to me that what he has if we are lucky may only have to do with his nerve injury and he could possibly overcome it with physical therapy, mild oxygen support etc.. however her and the other doctor are leaning more on the side of SMARD. The only way of telling if he has it or not is through a very very expensive genetic test that we just can not afford, OR if he keeps regressing from here and his breathing and or other issues keep getting worse and he doesn't start improving.
I hope to god that he does not have this disease.
I would not wish this on my worst enemy.
Here is a link I found on a boy who has this disease.
It's a pretty good summary of what it is and how it would affect him.
So from here we do a sleep study to see just how bad Milo's breathing is at night and we wait and watch for him to get better or worse.
http://ventsuperman.blogspot.com/2009/08/smard-brief-tutorial.html
Monday, November 28, 2011
This update is for all of you wanting to know what is going on with Milo.
I am only sitting down to post this because 1. I would like to update everyone at once - it gets hard to explain to everyone over and over again what I don't even understand my self and 2. I am sitting by the monitor after putting him to bed listening to him gasp for air at times and trying to make sure he is still breathing.
I know the last post I did on this blog was right after he was born and here it is almost 5 months later... woops.
Well here is the down low, I will attempt to make it short (short-er) or at least a little less descriptive.
As of right now Milo has been diagnosed with a few things.
Skull- Plagiocephalic
Torticolis
Cavernous Hemangioma
Dialation of the left subclavian artery
Chronic Thrombosis of left radial vein
Diaphragmatic Eventration
Now, if only someone can figure out why all of these issues have happened.
He had surgery last week on his diaphragmatic eventration, the surgery that was done is called "Diaphragm Plication"
As of right now we are not sure what exactly has caused this -- however the number one cause in babies with this problem is phrenic nerve injury- from birth trauma or phrenic nerve tumors.
My bet is on the birth trauma and I have felt that way since day one, even when we were not aware of all of the other issues that he has been diagnosed with.
Those of you who know my labor story know what I am talking about and why I have every right to think that is the problem.
I've been doing a little bit of research in all of the issues and they all tie in together with phrenic nerve injury- the vein malformation, dialation of artery and diaphragm issue all play a role.
These past months have been the most trying time of my life.
Not only has he had these issues but it took me this long to get the doctors to try and find out what is wrong with him. If I wouldn't have pushed and pushed, we could have possibly lost him in the long run.
After Milo's surgery he seemed to be more comfortable for the first bit, however the past couple of days it seems like it hurts to pick him up - even when being super careful.
Come to find out he also is only getting about 80-85% oxygen at night and should be on some oxygen at least during the night.
He now is sleeping worse than he did before the surgery.
Just yesterday I noticed the left side of his belly looks like its bloated and a bit harder than usual.
So who knows whats happening now or if there is something the doctors missed (wouldn't shock me one bit)
We have a neuromuscular appt on Monday and I am hoping she can figure this out, or at least attempt to help us. He may have to have an EMG or if not probably some other fun testing. So either way more and more pokes for my little guy, I'll update after his appt on monday.
On a happier note, here are some of the things that Milo is having fun with right now...
Sucking and biting just about everything that comes near his mouth
His cute two bottom teeth.
growling, yelling at us, yelling at us and more yelling at us, maybe the doc helped his diaphragm a little too much ;)
picking his feet up and just staring at them, you can tell he wants to grab them but just can't quit do it yet.
pulling my hair.
Laughing - of course the cutest thing ever.
I am only sitting down to post this because 1. I would like to update everyone at once - it gets hard to explain to everyone over and over again what I don't even understand my self and 2. I am sitting by the monitor after putting him to bed listening to him gasp for air at times and trying to make sure he is still breathing.
I know the last post I did on this blog was right after he was born and here it is almost 5 months later... woops.
Well here is the down low, I will attempt to make it short (short-er) or at least a little less descriptive.
As of right now Milo has been diagnosed with a few things.
Skull- Plagiocephalic
Torticolis
Cavernous Hemangioma
Dialation of the left subclavian artery
Chronic Thrombosis of left radial vein
Diaphragmatic Eventration
Now, if only someone can figure out why all of these issues have happened.
He had surgery last week on his diaphragmatic eventration, the surgery that was done is called "Diaphragm Plication"
As of right now we are not sure what exactly has caused this -- however the number one cause in babies with this problem is phrenic nerve injury- from birth trauma or phrenic nerve tumors.
My bet is on the birth trauma and I have felt that way since day one, even when we were not aware of all of the other issues that he has been diagnosed with.
Those of you who know my labor story know what I am talking about and why I have every right to think that is the problem.
I've been doing a little bit of research in all of the issues and they all tie in together with phrenic nerve injury- the vein malformation, dialation of artery and diaphragm issue all play a role.
These past months have been the most trying time of my life.
Not only has he had these issues but it took me this long to get the doctors to try and find out what is wrong with him. If I wouldn't have pushed and pushed, we could have possibly lost him in the long run.
After Milo's surgery he seemed to be more comfortable for the first bit, however the past couple of days it seems like it hurts to pick him up - even when being super careful.
Come to find out he also is only getting about 80-85% oxygen at night and should be on some oxygen at least during the night.
He now is sleeping worse than he did before the surgery.
Just yesterday I noticed the left side of his belly looks like its bloated and a bit harder than usual.
So who knows whats happening now or if there is something the doctors missed (wouldn't shock me one bit)
We have a neuromuscular appt on Monday and I am hoping she can figure this out, or at least attempt to help us. He may have to have an EMG or if not probably some other fun testing. So either way more and more pokes for my little guy, I'll update after his appt on monday.
On a happier note, here are some of the things that Milo is having fun with right now...
Sucking and biting just about everything that comes near his mouth
His cute two bottom teeth.
growling, yelling at us, yelling at us and more yelling at us, maybe the doc helped his diaphragm a little too much ;)
picking his feet up and just staring at them, you can tell he wants to grab them but just can't quit do it yet.
pulling my hair.
Laughing - of course the cutest thing ever.
Tuesday, July 12, 2011
Sunday, July 10, 2011
Milo
So after all of the waiting around he is finally here.
Milo was born 7/2/2011 at 1:40am 8lbs 7oz, 20.5 inches(2 weeks early, I couldn't imagine going to the full 40 weeks or more with this big little guy.
It all started Thursday morning, I woke up having some really bad back pain but that was nothing new really, just a little more intense this time. I also had a bit of bleeding (sorry, tmi) and with all of the preterm stuff I had going on the Dr. wanted me to go into the hospital if I had any bleeding at all, so long story short I went in to labor and delivery, they checked me and I was still only at a 2 so they sent me on my way.
Contractions started up and just got more intense as the day went on but they were not too bad so I wasn't TOO worried, just a little more irritated. I went to my 38wk appt that same day later in the afternoon, the doctor checked me again and I was still only at a 2 so he said with everything I had going on he could be there with in a day or maybe couple weeks- who knows.. by this time I was in quite a bit of pain but still able to walk and what not through my contractions.
That night at about 9:00 the contractions were super strong and got to only about 2mins apart and since the Dr told me to go in if they got that close... I did.
Well I went in and STILL at a 2 and in a lot of pain.
I had to work the next day so I didn't want the morphine shot again so they gave me something a little less intense for the pain and sent me home.
What they gave me made my pain even worse and I ended up back in the hospital at about 3:00am.. yep STILL at a 2 and in A LOT more pain.
I got the morphine for the pain and they sent me home again.
The morphine made me drowsy but didn't help with my pain, I got to the point where I was not going to last any longer and was about on the floor with the contractions so on Friday at about 3:00pm I was back in the hospital (balling as I walked in the door, super embarrassing) she checked me and said I was for sure staying and I was at a 4, she offered me the epidural right away and I have never felt so relieved in my life.
From there on we waited, and waited and waited till finally I had dilated to a 10 and it was time to start pushing- which by the way was the easiest part of the whole pregnancy and birth.
After only 45 mins my little guy was here, as they were cleaning him, weighing him etc... they noticed his arm.
They all started looking at it and had no idea what was wrong with it.
I can't explain what it looked like but I guess the best way to explain is that it looked like his bones were protruding out and that he had sores on the outside as well. They handed him to me for about 1 min then took him to the neonatologist. The neonatologist came back in a couple hrs later and basically said he did not know why or what was wrong with Milo's arm and that he needed to go to the specialist's up at primary children's.
That day at about 5pm the ambulance came and took my little guy... by far one of the hardest things I have ever had to do, saying goodbye to him like that was indescribable.
They hooked an IV in his little head for fluids for the ride and strapped him down in a bed and sent him on his way. Ron and I both cried a lot that night.
After what seemed like forever and some testing they decided that what Milo has is Vascular Malformation which means that his vessels did not form correctly in his arm. So the big lumps are clots in the surface veins.
They said that they are the veins that are not deep tissue so they are not too worried about clotting going to his lungs or anything like that.
They only did an MRI on his arm and not his whole body because he is so little and a full body MRI takes a lot more of the sedation med than just an arm MRI and the sedation is not too safe at this young age, as of right now we have to just watch him grow and go to a lot of follow up appointments with the specialist.
I can only pray that these are not anywhere else in his little body and that he will be ok down the road.
Other than his arm he has been such a good baby- well worth the rough pregnancy and days of labor.
We could not be happier that he is here with us.
Thank you everyone for your thoughts and prayers, it means a lot to us that you all care so much.
The past week has definitely been a learning experience for me.
This past year has been life changing for me in many ways, becoming a mother and losing my own mother have been one of the best and worse things that I never pictured happening.
Anyways, that's for another post.
Thanks again everyone. We are more than grateful for you.
Here are just a few shots of our little Milo, or as Ali Jo would say "Baby Lo"
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He looks so much like his daddy
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Marti loves her new little friend, she is very protective of him already.
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No, I didn't tell them to pose this way
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Milo was born 7/2/2011 at 1:40am 8lbs 7oz, 20.5 inches(2 weeks early, I couldn't imagine going to the full 40 weeks or more with this big little guy.
It all started Thursday morning, I woke up having some really bad back pain but that was nothing new really, just a little more intense this time. I also had a bit of bleeding (sorry, tmi) and with all of the preterm stuff I had going on the Dr. wanted me to go into the hospital if I had any bleeding at all, so long story short I went in to labor and delivery, they checked me and I was still only at a 2 so they sent me on my way.
Contractions started up and just got more intense as the day went on but they were not too bad so I wasn't TOO worried, just a little more irritated. I went to my 38wk appt that same day later in the afternoon, the doctor checked me again and I was still only at a 2 so he said with everything I had going on he could be there with in a day or maybe couple weeks- who knows.. by this time I was in quite a bit of pain but still able to walk and what not through my contractions.
That night at about 9:00 the contractions were super strong and got to only about 2mins apart and since the Dr told me to go in if they got that close... I did.
Well I went in and STILL at a 2 and in a lot of pain.
I had to work the next day so I didn't want the morphine shot again so they gave me something a little less intense for the pain and sent me home.
What they gave me made my pain even worse and I ended up back in the hospital at about 3:00am.. yep STILL at a 2 and in A LOT more pain.
I got the morphine for the pain and they sent me home again.
The morphine made me drowsy but didn't help with my pain, I got to the point where I was not going to last any longer and was about on the floor with the contractions so on Friday at about 3:00pm I was back in the hospital (balling as I walked in the door, super embarrassing) she checked me and said I was for sure staying and I was at a 4, she offered me the epidural right away and I have never felt so relieved in my life.
From there on we waited, and waited and waited till finally I had dilated to a 10 and it was time to start pushing- which by the way was the easiest part of the whole pregnancy and birth.
After only 45 mins my little guy was here, as they were cleaning him, weighing him etc... they noticed his arm.
They all started looking at it and had no idea what was wrong with it.
I can't explain what it looked like but I guess the best way to explain is that it looked like his bones were protruding out and that he had sores on the outside as well. They handed him to me for about 1 min then took him to the neonatologist. The neonatologist came back in a couple hrs later and basically said he did not know why or what was wrong with Milo's arm and that he needed to go to the specialist's up at primary children's.
That day at about 5pm the ambulance came and took my little guy... by far one of the hardest things I have ever had to do, saying goodbye to him like that was indescribable.
They hooked an IV in his little head for fluids for the ride and strapped him down in a bed and sent him on his way. Ron and I both cried a lot that night.
After what seemed like forever and some testing they decided that what Milo has is Vascular Malformation which means that his vessels did not form correctly in his arm. So the big lumps are clots in the surface veins.
They said that they are the veins that are not deep tissue so they are not too worried about clotting going to his lungs or anything like that.
They only did an MRI on his arm and not his whole body because he is so little and a full body MRI takes a lot more of the sedation med than just an arm MRI and the sedation is not too safe at this young age, as of right now we have to just watch him grow and go to a lot of follow up appointments with the specialist.
I can only pray that these are not anywhere else in his little body and that he will be ok down the road.
Other than his arm he has been such a good baby- well worth the rough pregnancy and days of labor.
We could not be happier that he is here with us.
Thank you everyone for your thoughts and prayers, it means a lot to us that you all care so much.
The past week has definitely been a learning experience for me.
This past year has been life changing for me in many ways, becoming a mother and losing my own mother have been one of the best and worse things that I never pictured happening.
Anyways, that's for another post.
Thanks again everyone. We are more than grateful for you.
Here are just a few shots of our little Milo, or as Ali Jo would say "Baby Lo"
Wednesday, April 20, 2011
I'm back!
So as some of you may have noticed I have been slacking on the photography thing for a while now due to losing a family member and kind of a rough patch in my pregnancy.
Well now I am back and will be booking spring/summer sessions up until July-- then I will have a little more time off again with the new baby and hopefully booking sessions not too long after that.
So if you are interested in a Spring time session please contact me asap so I can save a date.
Thanks!
Well now I am back and will be booking spring/summer sessions up until July-- then I will have a little more time off again with the new baby and hopefully booking sessions not too long after that.
So if you are interested in a Spring time session please contact me asap so I can save a date.
Thanks!
Thursday, March 3, 2011
Thought I would post a peek at the little guy at only 20 weeks.
Here is a front view of the little guy at 20 weeks with his little mouth open- he was trying to put his fingers in his mouth during the ultrasound.. He couldn't quite figure out how to do it though.
Profile with his hand under his chin at 20 weeks
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