Genetics

Today we saw the genetics doctor. Getting there was its own adventure, so I will start there.

Leave the house at 7:15 for an 8:00 appointment. It takes 20 minutes to get there I figure with traffic, since I knew where I was going (I pass "the exit" everyday on my way to the hospital and the directions are simple) and that leaves me time to feed Ollie while we are in the waiting room. Awesome plan that didn't go as awesome as I planned. Apparently there are two exits for Cantrell Rd, 20 minutes apart from each other. No one told me this, I was told take Cantrell, take a left at the light and drive 3 miles and its on the left side. Let me tell you, the directions made sense, I did what they said, until I ended up in the ghetto of downtown, I passed the Salvation Army with lines of homeless people outside waiting to maybe eat breakfast. Surely the genetics office can not be in this part of town. So I called up my friend, who got on Google, trying to figure out where the hell I was and where I needed to be. Turns out I was still 20 minutes away from my appointment. No biggie, get back on the highway, get on highway 630 and go from there. Well, the only place I could figure out how to get back on the highway was the exit AFTER 630. So I just got on the highway after the exit I needed to take, took the next exit and by some crazy ass way, I ended up at the hospital, which was great news because the hospital is off of 630 and I knew my way around there. Somehow I managed to find 630 by totally missing the exit I needed and driving around aimlessly! Eventually I made it to my appointment, so upset I was almost 20 minutes late. We waited 4 months for this appointment, and I was so afraid they wouldn't see us (even though I called to tell them I got lost) or that they would rush us out of there since we were late. I get in, check in, sit in the waiting room and almost right away a nurse comes out to get us and I apologize for being late. Her response "Oh I didn't even realize you were late. We are just ready for you now" REALLY?? I can only laugh I guess.

So, anyways, enough about my wonderful adventure there. The genetics doctors were great. We saw two doctors, we had some serious language barrier struggles going on, but we worked through it, I had them write stuff down when I couldn't understand what they were trying to say, and truth be told, they could have spoken clear English and I still wouldn't have understood the words they were trying to say!! LOL. They think they have an idea what's wrong with Ollie. They are running a panel of test and they should take between 1-8 weeks get all of them back. Hopefully in 2 weeks we will be leaning more towards a definitive diagnosis, and do more testing to narrow it down and hopefully in a few months we will have a true diagnosis. We've waited almost a year to find out what's wrong with Ollie, and now that I know its only a few more months until we know, I just feel like I can't wait that much longer...but we've been waiting 10 months, what's another 3??? Its antagonizing is what it is!!! It makes me sick knowing we are so close to knowing. I just want to know. I have heard the question "what will knowing change?" so many times over the last 10 months that I've been saying "I just want to know what is wrong. I want a real diagnosis, not just a bunch of mystery diagnosis that are part of something bigger that no one can figure out" I want the final piece to that puzzle that's going to pull this all together. I want to know if the outcomes the pulmonologist gave us are realistic or knowing that he has a particular syndrome will change those outcomes. Is there a simple treatment for all of this, or is it worse then expected? We won't know until we get that diagnosis. And as much as I don't want to rush my children's lives away, I want these next few months to hurry up so we can know...

Vomit

Yes this post will be about vomit so if you can't handle even reading about vomit, please don't read...

So since Oliver had the Nissen done (where they tighten the esophageal sphincter so he won't reflux anymore, it also prevented him from being able to vomit. So when he starts dry-heaving, its him trying to vomit. He is the cleanest "vomitter" (for lack of a better word). I stick the end of the big 2oz syringe onto the burping tube and insert into his g-tube and that's how he vomits. Nice and clean, right into the syringe. Dump the syringe into the sink, rinse and we are good to go!

Well, today was a different story. I thought for some reason it would be great idea to rock him after he had a 4oz bottle... BIG no, no!! He starts dry-heaving. I plug him up, vomit starts coming into the tube and I didn't think it would be SOOO MUCH! Luckily I have a bottle close by so I grab it and I'm trying to unscrew the cap so I can pour the vomit in it without unplugging him. In the process, I tipped over the syringe and vomit pours all over the floor. I get the bottle open, he finishes vomitting, I put the syringe into the bottle. Unhook little man, and set him on the floor. Thinking its just a 2oz mess to clean up, no biggie, I hop up to grab a towel and a bowl of warm soapy water...and my FOOT KICKED OVER THE BOTTLE.... DAMN IT!!! another oz of vomit on the floor, in an entirely different spot! GROSS!!

I believe I got the stench of puke out of the carpet, but seriously, I just went from making my kiddo the "cleanest vomitter" to the messiest vomitter! At least when Keegan pukes he knows to do it on the floor in the kitchen, or on an area rug. Aiden knows to go to the bathroom....Oliver, through no fault of his own, "pukes" on the living room carpet. Fabulous! LOL

Oliver Danger's Birth Story

**Reader digression is advised**

I remember being 32 weeks pregnant (about to turn 33 weeks) laying on the couch, feeling like I was dying. Todd had taken the boys out to get a new tool box. By the time he came home I was begging him to take me to the hospital. I told him just to drop me off and I'd let him know what was going on later so he didn't have to bring the boys in. It was such a struggle to walk and breath to just get into the hospital.

I get in and get hooked up to the monitors, baby sounds/looks great. Me on the other hand, no so much. They hooked me up to an EKG and I was having a heart attack, or had just had one. I was struggling to breath so badly. They had me hooked up to oxygen and transported me in an ambulance to the OTHER SIDE OF THE HOSPITAL! (way to go New Mexico!) to get a CT Scan or an MRI done. I don't know which one it was but they use that fun iodine contrast, which I told them makes it hard for me to breath, and given the fact that I already couldn't breath made it ever more stellar! But the benefits of the contrast outweighed the risk, blah blah blah.. They said I had a pulmonary embolism and I was lucky they caught it because most of the time people just die from them and they don't find them until the autopsy (Really? Is that what you think I need to hear right now?!?! NO its not!) I know they put a central line in to my heart, "just in case". I think it was after this that Todd got there. I don't remember if I called him or the hospital called him though.

A lot of the details after that are funny. I remember going back into my room and them starting me on blood thinners and a few hours later me all of a sudden feeling like Ollie was trying to come out. The OB checked me and sure enough he was, so in an effort to stop my labor and transport me to a different hospital, and shut off and reverse the blood thinner I could have swore the baby was just going to pop out...and guess what....he did! I don't remember seeing him after he was born, I didn't know what he looked like, if he was alive, breathing, where he was, where they took him or anything. As for me, I remember people screaming, the look of fear on my poor husband's face, hearing things crashing, the feel of the nurse putting her hand over mine and putting it on my central line, whispering (or atleast it seemed like it) "Your job is to hold this in and stay alive", lifting my head and seeing a trail of blood on the floor. The next thing I remember is waking up in the ICU, Todd by my side. He told me Ollie was okay and they were taking him on the plane to the other hospital. What a tough situation to be in, stay with your wife who just bled out before your eyes and died, then came back to life or stay with your 8 week premature baby! I know I stayed in the ICU for maybe a day. I know Karen and Colin drove down from Colorado to stay with Aiden and Keegan until my mom could fly in. I know some guys from Todd's squadron rushed to the house to stay with Aiden and Keegy until Karen and Colin got to the house so Todd could come be with me. These things I know because they were told to me, I don't remember them...but I remember Todd being there.

In the end, I know I bled out so badly that I ended up needing a total and complete blood transfusion, I flat lined for a little while and I needed a hysterectomy to stop to the bleeding and save my life.

One thing I do sort of remember is my transport to the hospital. I had to ride in the ambulance and I felt so sick. I could see out the back window and I could see Todd's truck behind the ambulance following us. I remember the EMT pulling over and buying me gum to chew so I wouldn't throw up all over "his bus". Getting to the hospital and getting into my room I don't remember. I barely remember them wheeling me down to the NICU to see Ollie. I couldn't even tell you details of the first time I saw & held my baby because I don't remember. That hurts, I can't lie.

They say he was breathing room air really fast and barely needed oxygen (which makes me roll my eyes because now the poor thing can barely breath and they are talking about putting him on oxygen, but that's a whole different story). Oliver was transferred to the ICN after a day or two, and at some point during his ICN stay is where I start to remember things, I think it was about 3 days later I can remember things. The first thing I can remember is my nurse being "mean to me" (she really wasn't. she was trying to help me get on my feet) She told me I couldn't see Ollie until I could get up off the bed myself and put myself in the wheel chair and then she would wheel me down to see him. It took me a while to get up but I did it, and I remember it was late at night, around 11pm. He was sleeping so peacefully and looked so tiny, yet so big compared to all the other babies around him. I know I held him and held his hand, like I'm sure I did many times before, but that was the first time I remember doing so....late at night, all alone in the quiet...just me and my baby.

No, I won't let go

I heard this song today and it literally brought me to tears.

Rascal Flatts: I won't let go

It's like a storm

That cuts a path

It breaks your will

It feels like that

You think you're lost

But you're not lost on your own,

You're not alone

I will stand by you,

I will help you through

When you've done all you can do

and you can't cope

I will dry your eyes,

I will fight your fight

I will hold you tight

and I won't let go

It hurts my heart to see you cry

I know its dark this part of life

Oh it find us all and we're to small

to stop the rain

Oh but when it rains

I will stand by you,

I will help you through

When you've done all you can do

and you can't cope

I will dry your eyes,

I will fight your fight

I will hold you tight

and I won't let you fall

Don't be afraid to fall

I'm right here to catch you

I won't let you down

It won't get you down

You're gonna make it

I know you can make it

Cause I will stand by you,

I will help you through

When you've done all you can do

and you can't cope

I will dry your eyes,

I will fight your fight

I will hold you tight

and I won't let go

Oh I'm gonna hold you

and I won't let go

Won't let you go

No I won't

ALL DONE!

For the past month or so I've been getting pretty jealous of all my friend's and their babies that are younger then Ollie, or heck even the same age, because their babies are eating real food, rolling over (he used to know how to roll over, but now that skill has since been lost), getting into a sitting position all by themselves, crawling, scooting, pulling to standing, cruising furniture, and some are even walking. I've not only been jealous, its made me pretty sad. I will admit that I even started crying a couple weeks ago seeing a baby the same age as Oliver crawl all over her house and taking baby steps around the house while holding a hand. At that moment, in my heart, I just felt a sense of defeat for Ollie, and I felt sad, jealous and even mad FOR Oliver. How is all of this fair to him? Why can't his body just give in and work for him instead of against him?

With all of that being said, I've decided I don't want to be mad or jealous anymore. Of course I want him to catch up developmentally and be able to crawl, walk, eat real food, etc...but for now, I'm going to enjoy what we have. I mean, I can sit him down in one spot, leave the room, come back and guess what...he's still in that spot. No playing the guessing game of "Where did the baby go?". Even that is a huge accomplishment, up until last week I would never dream of leaving his side while he was sitting up for fear that he might fall over, but now we can get a good 20 minutes out of him before he's too tired to sit up anymore on his own and then its lay down or Bumbo time. Oh and we can leave his crib on the highest setting still which means no breaking my back trying to put him in the crib since I'm so short, PLUS it makes life easier with the feeding pump if I don't have to climb into the crib to reach.

So I am all done being jealous and mad. A little sad for Ollie? Yes of course, but all in due time he will catch up in his own way. It may not be the traditional way like other babies, but thats not Oliver, he's not traditional. We continue with extensive PT, ST, OT, FT and one of these days he will get there...one of these days!

Have I lost my sanity? Yes, I think so!

Aiden is unofficially out of school for the summer. Wednesday his school called me to come pick him up telling me he was "dismissed for the rest of the year". Of course I think he is in trouble so I rush down there. Oh no, not in trouble, but his school decided because Aiden said he wanted to go home, Aiden could go home. After all, there is only a week left of school. On top of it all, they told my FOUR YEAR OLD he didn't have to come back to school if he didn't want to....um, isn't that my decision to make, not my 4 yr olds? But now he has it in his head he is done with school. I made him go to school on Thursday to participate in his end of year program and then I signed him out for the rest of the day. And at the end of the program his teacher announced to a class of 4 yr olds that they didn't have to go back to school if they didn't want to, because although their last day is the 9th, they stopped taking attendance after the program! So now there is a classroom full of 4 yr old that think they don't have to go to school if they don't want to. Luckily, I am a SAHM and I can keep Aiden home, but there are moms and dads who can't do that and now they are faced with a situation where they need their kid to go to school and the teacher already told them they didn't have to go back! Seriously!!! Not cool! But I am keeping him home anyways. Its not worth the hassle.

I know my kids drive me nuts at times, but I'm not sure when I officially lost my sanity, but it happened somewhere along the way. Todd left for 2 weeks for work, and what did I do, I offered to watch 2 more kids in addition to my own 3. And its not for only a couple hours a day, its 13 hours a day, every single day for the 2 weeks Todd is gone. 630am-730pm! What is wrong with me?!?!? I will say though, I am so happy to have only 3 kids. Every now and again I think about adopting a toddler, but I think at this point in my life I am good. Maybe when Oliver is older I might get that itch again. But for now, I'm all set with just 3 kids!

The problem I am having with watching these kids, is there is a 7 yr old boy, and Keegan HATES him. And I mean absolutely HATES him. He goes out of his way to terrorize this kid. Granted I have told the 7 yr old that Keegan doesn't like to be touched or talked to unless its on his terms, but 7 yr old insist on standing really close to Keegan, touching Keegan, talking to Keegan, so in turn Keegan head butts him, spits on him, drags him down to the ground and punches him, tries drowning him in a pool, throws books, sippy cups, toys at him. Keegan passes up no opportunity to walk by him and just ever so kindly give him a swift elbow to the forehead, or a quick pull of the hair. I don't know what to do. I've warned 7yr old to leave Keegan alone, and he won't. At this point I say, "you've been warned, and if you mess with him, he will jack you up!"