Monday, September 29, 2008

the whole story

when milo was born six weeks early we were told that he would probably stay in the nicu for a couple of weeks so that he could get the whole "suck, swallow & breath" thing figured out...he had some respiratory distress during labor, but no one knew that he had any damage to his brain until months later when the seizures began (although there were signs that things were off, such as his super fussiness and feeding difficulties).

they discovered pvl when he had a cat scan at the emergency room....when they told me that milo had periventricular leukomalacia i of course had no idea what it was. they gave me a little write up about it and said to find a neurologist...then sent us on our way. on our way home from the hospital i read the piece of paper not knowing how big this news talked about a possibility of vision impairment, a possibility of cerebral palsy, a possibility of mental retardation...i immediately went into denial. i didn't want to know anything about pvl. i didn't look it up online, i didn't want to talk about it, i didn't want to think about it, i just wanted it to go away. milo was just a preemie and he was just behind but he would catch up and that's what i told myself for about a month and a half. milo's doctor at the time didn't seem too concerned about the pvl...and we couldn't get into see a neurologist for about two months, so it was pretty easy for me to just pretend like it wasnt happening.

then one night jesse was at work and milo was sleeping and i hesitantly started to look up information about pvl. it was like i opened the flood gates....i couldn't stop. i was pvl obsessed. it was very emotional...i was google searching and sobbing simultaneously. i was hit especially hard by the pvl yahoo i was reading the posts written by parents my denial was forever gone. and then i started to realize things that i had never allowed myself to realize before. i realized milo couldn't really see, and i realized that milo had cerebral palsy.

for weeks my free time was spent researching and crying. although it was alot easier being in denial milo needed me to advocate for him and so i did. i became pretty familiar with the other stages of grief...but as time went on i began to heal...and im still healing.

i have my bad days and moments where i begin to cry out of the blue. i have a hard time watching little boys run around and play, and i avoid looking at pictures of my friends kids on there myspace and facebook just still feels too bitter and i feel bad about not wanting to see my friends beautiful children who they are as proud of as i am of milo....but i cant help it, its how i feel. but my good days and my good moments far outweigh the bad ones. i adore milo. he is the love of my life...i am so proud of him constantly, and every time he does something new it is so exciting and we have so much fun together...especially now that hes starting to get past the super fussiness...and i'm finally at a place where instead of feeling sad for all the things that milo might not be able to do, i'm taking it day by day and celebrating what he can do and all of his accomplishments. the dust is settling.

Sunday, September 21, 2008


milo has been changing lately, in a good way. most of his early months he spent being fussy, irritable, uncomfortable, and just pretty much inconsolable. over time things gradually improved, although many more obstacles were thrown his way, such as seizures, feeding tubes, etc... but my point is, although his mood gradually improved to an extent, up until the last few weeks i wouldn't have called milo a happy baby....and it broke my heart. he liked to be held, but never wanted to cuddle. he cried, a lot. he arched. he screamed. he fussed. then all of a sudden....everything changed. he wants to snuggle all the time now (and i love it). he is more relaxed, more easy going, and more comfortable in his own skin. he seems content, which makes me content. there is still a long road ahead of us, but for right now we are enjoying our triumphs...and i am enjoying my happy baby.

Friday, September 19, 2008

home sweet home

we are home at last! milo got discharged yesterday and so far so good....he still has a little cold, and is on antibiotics for his infection but all and all i think he is feeling much better. i'm trying to get him back to his normal routine...and i am really looking forward to this weekend so that dad can take over a bit and i can get a little break...a whole week staying at the hospital with your kid along with a nasty cold really takes it out of you.

i was so tired last night, and it was really difficult to get him to go to sleep because his routine is so messed up...and i momentarily felt really defeated, like i just couldn't do it and there was no way i was going to make it through tomorrow...but then i snapped out of it...and i got him to sleep, and the day is half over today and i've made it through just fine.

Tuesday, September 16, 2008

ugh....still staying at the hospital

well....i went ahead and unpacked my stuff today at the hospital so that it wasn't in an annoying pile in the middle of the floor anymore. looks like were going to be there a few more days. milo is not yet tolerating his feeds and it looks like he did catch my cold, so, that will probably slow down his recovery. i'm so tired.

Monday, September 15, 2008

another update....

milo was sent home saturday afternoon from the hospital....and everything was seemingly okay, but a couple of hours after we got home things went downhill....he was very very fussy ang crying alot, and his cry was not his normal cry, it was very high pitched, so i started getting concerned.

i began taking his temperature and it was just below 101 and we were supposed to take him to the er if it was over i gave him some tylenol to see if that would bring it down...and it did, a little, so we decided to wait it out a little longer, (even though my gut told me we were going to end up at the er)...and at about 9 pm his temp spiked up to 102.2, so off we went to the er...where we stayed for 11 long hours (i actually only stayed 8 hours, i went home to get some sleep once we found out for sure that he was getting admitted).

they have run tons of tests, he has had x-rays and a sonogram...and it looks like everything with the tube is okay, its in the right place, there is no abscess or anything, its just a run of the mill infection, which he's being treated for with antibiotics through an iv....and as soon as he is tolerating feeds and does not have a temperature for 24 hours he can come i'm hoping tomorrow.

to top it all off i started coming down with a pretty bad cold that makes staying in the hospital extra hands are practically raw from washing them and hand sanitizer as i try to avoid passing my cold on to him, because that's the last thing he needs right keep your fingers crossed for us that all goes well and we get to come home tomorrow.

Friday, September 12, 2008

quick update

i just wanted to post a very quick update....milo's surgery went well and he is at the hospital recovering...i will post details and pictures in the next day or two when i have more time. also, thanks to everyone for keeping us in your thoughts, and for your words of friends and family are the BEST, and i honestly don't know what i would do with out all of the support and wisdom of the moms out there who's blogs i follow, and of those who follow mine, your advice and encouragement mean the world to me...really.

Tuesday, September 9, 2008

milo's surgery

well, milo's surgery (to place his g-tube) has rolled around again....we could not do the procedure the first time around due to a piece of bowel or intestine obstructing the path....but this time it should definitely happen because there will be a surgeon assisting our gi doctor...his surgery is this thursday, on september 11th....and i'm still waiting to hear from the hospital to find out what time we need to arrive, but since milo is so young i'm sure they will schedule us nice and early. we will be staying at the hospital (children's medical center) for a few days following the procedure. so wish us luck!

Wednesday, September 3, 2008

picture post

milo was in an amazing mood actually might have been the best day i can remember ever as far as his mood goes, so, it was pretty darn cool! i got lots of cute pictures of him as we were lying and playing in bed...he was being very cute...and we had so much fun. also, we had a weight check today and he now weighs 14 lbs, 5 ounces....we were stuck at 13 lbs for what seemed like forever so hooray for getting over the 14 lb mark! go milo!

From milofunday