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.
Jori, that sweet baby boy is beautiful! He looks so much like his handsome daddy. I'm so sorry the two of you have to go through this hardship. I think of you often, know that your baby boy is in my prayers.
ReplyDeleteLove you friend......