Wednesday, November 30, 2011

In addition to the last post.

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!!!

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.

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"
He looks so much like his daddy
Marti loves her new little friend, she is very protective of him already.

No, I didn't tell them to pose this way

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!

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

Wednesday, March 2, 2011

Taking my own advice

This week I am GOING to get things done-
Make room for the baby in our tiny two bed apartment (he will be sharing a room with the washer and dryer.. how quaint)
Start boxing mom's things up and actually throwing things of her's out.
No more contractions.
These things are on my top to do list right now, how I am going to do any of them I have not a clue.
I have so many things that I need to get done before this baby gets here but these "to do's" are going to be my top priority right now.
So come to find out those nights I have spent miserable, throwing up and in extreme pain have been me having contractions and apparently I started to dialate just a tad..
I am only 5 months along and this baby better stay in there and cook for a few more months.
I know a lot of women have complications during pregnancy, and a lot of those women end up having perfectly healthy babies in the end.. but at the same time a lot of them end up losing theirs- I am not freaking myself out just yet.. just trying to do what I can to prevent it from happening again.
Just take it easy and not do too much or anything that is going to stress this kid out I guess.. it is a lot harder than it sounds- especially when you have not done one thing to get ready for the baby- ugh...
I have decided that I need to take a little of my own advice.
I had someone ask me the other day " Jori, how do you do it?"
"Do what?"
She said "Everyone can be complaining or making a big deal out of something or get mad at something that really shouldn't matter in the first place and you can just sit there and mind your own business"
I kind of just sat there for a second and I just said "I guess I just don't see the point in making a big deal out of things that don't or shouldn't matter at the end of the day"
I have a lot of things that have been stressing me out the past couple of months and a lot of those things are simply out of my control and I just need to let things happen the way they happen... such as my husband getting a new and better job, getting into a home, my mom's death and everything that is going on with her house, not having room for a baby, money issues and the list goes on but I'll stop there.
I have been trying not to go to my mom's grave lately, well at first it was that I stopped going because it hurt too bad and now it is that I am trying NOT to go because I don't think it helps the whole "Me trying not to stress out" thing.
We are going to my mom's tonight to start boxing her things up and doing who knows what with it. 
How do you get rid of your dead mothers belongings? 
They were her's, if she can't have them then no one should. 
I don't want to split anything up.
I don't want anyone else to ever wear anything of her's.
I don't want to throw her things away... not even the junk.
But this is reality... and it has to be done.
Wish me luck.

Thursday, February 3, 2011

Help Dr. Yonnet get Elon back.

While I was browsing the news today I ran into a story about a man who truly inspired my mom to keep fighting through her battles.
Last year I took my  mom to the specialty hospital in SLC for some nerve testing to be done.
There we met Dr. Yonnet, a paraplegic who was the kindest and most caring doctor I have ever taken my mom to.
He shared his story with us (which you can read about on the petition)
We also met his dog Elon who just waited patiently and quietly outside of
Dr. Yonnet's exam room for him to finish his work.
My mom wanted to pet the Elon so she bent over and went to pet him and I said  "Mom! you can't pet those kinds of dogs because they will get mad and are for service only" Of course she believed me and got this OH CRAP look in her eye's.
Me and Dr. Yonnet laughed so hard, by then she knew I was joking (poor lady always got teased by us girls)
Anyways, after we left the office she kept talking about how amazing it was that he has been able to keep living life and he was able to pursue his career and goals. She was simply in awe of him.
The whole ride home she was telling me she was going to pull through this next surgery, she was going to get better, she was going to "make" her body heal, she was going to be there for us no matter what, she was not giving up.
My mom's body ended up giving up before her mind did.
She passed away Dec 31st 2010.
When you loose a family member, you start to loose hope. 
Please sign the online petition for Dr. Yonnet- he has lost a family member and we could help make it possible for him to get Elon back.
Thanks!  
 

Mom is gone and a baby boy is on the way.

For years now I had been having horrible nightmares about my mom passing away, they would all play out in different ways. Sometimes we would be doing her make-up and hair in her casket in others my sisters would call me with the horrible news and in some of them she would just end up "gone".
December 31st 2010 my nightmare had came true.
My sister called me, barely able to speak, sobbing and helpless trying to tell me what had happened.
I couldn't quite make out what she was saying but I knew what she was trying to say anyways and for some reason I just kept almost ignoring what she was saying to me, I didn't want to believe it and I didn't want to hear it I guess. Then it hit me and it hit me hard.
I thought I knew pain and heartache but truth is I didn't until that day.
I headed straight over to my mom's house where my step dad, sister and two policemen were in the living room ...and my mom in her bedroom.
Words can not express the feeling of sitting in your mothers home while she is lying there dead in the next room. I wanted so bad to run in and help her, keep her warm, hold her and make her feel safe- I didn't want her to be alone like that, but they had warned us that it wouldn't be good for us girls to see her that way.
So no matter how bad I wanted to go in there, I didn't.
We sat there waiting for the mortuary to come and get her for what seemed like was hours.
I had never felt so many feelings at once... lost, hurt , alone, angry and guilty.
For some strange reason I have always known deep down inside that my mom would not be around to see me have children, I hated to think that way but somehow I just knew she wouldn't be here when that day came and it hurts to say I was right.
I'm not one who believes in life after death, never have and I have no reason to believe it -I really wish I did because I think it would make things a little bit easier.
My mom was always one to tell me she would let me know if she could still see, hear or feel me when she was gone and I have yet to have any sign of her around me.
She is just gone and when your time is over, it is over.
This past month I have been a complete mess and I apologize to those whom I have neglected or ignored in any way, It is hard to even want to get out of bed in the mornings or do anything for that matter.
The more I do the more guilty I feel and the pain just seems to get deeper.
I know that time does not heal all wounds, and I most definitely know that it won't heal this one.
I don't know the exact reason I am writing this in my blog, maybe in hopes of that it will help me heal? Be stronger? Or maybe just to get a little bit of pain off of  my chest one piece at a time.
It has been hard being excited about the little one that is inside of me right now but I am trying so so hard to take care of him and myself no matter what.
I have so much more to say but I figure I would save that for the next depressing blog entry I make ;)
On a happier note... I am now 17 weeks preggo and a few weeks ago (week 14) they did an ultra sound to check out my gal bladder because of some pains I was having and while she was doing that she decided to let me take an early peek at the baby and with in just seconds we saw that it was most definitely a HE (or maybe it was an extra hand down there) Everyone has always asked me if I wanted a boy or a girl and I can honestly say I have not ever cared, as long as the baby is healthy I will be happy. I felt him move, well more like "flutter" for the first time at about 15 weeks, it was a crazy feeling- not strong at all, just a quick little flutter, I can't wait till his kicks and turns get a little stronger.
Pregnancy so far has.. well, for the most part sucked to say the least.
It seems like I have just had problems after problems and of course my moms passing just made everything worse. I have noticed with in the last two weeks the nausea has at least calmed down a bit and I only get sick here and there instead of all damn day, so that's a plus.
So as of right now I am just stuck with constant migraines and mild nausea along with all of the normal preggo pains and what not, but yes- I am STILL trying to enjoy being pregnant while I can and yes I do know that I am very luck to have the opportunity to have a child of my own- I will be forever thankful for that. Well I will be having my 18 week appointment on Monday so maybe I will update everyone on the blog after that.
Please never ignore your mothers phone calls and assume you will be able to call them back a few days later, remember that they themselves need someone to care, hold and listen to them just like they do for us.
Simply let them know you that you love them.
Baby at 14 weeks

Love u mom.