In progress.

Ok, so I've currently got a call in to the Pulmonologist. Waiting for a second call back.

I noticed last night when Lily was laying down to have her diaper changed that the area around her mouth was blue.  She had been fine sitting up. I've noticed blue appearing more and more lately.

Some of the people I know have tried to tell me that blue is going to happen when people have the problem that Lily has. I'm not convinced. Turning blue is never normal, and Lily is turning blue more and more recently. Now, there's some question in my mind as to if I'm just *noticing* it more, but I don't necessarily think that's the case.

Anyways, so the pulmonologist's nurse just called me back, and asked if Lily has a SAT monitor.  Said that would be handy to have. So, I can see us getting one soon. Thank goodness for Medicaid. Anyways, the nurse said that he would probably want to see her, and we would see what we needed to do.

Sort of having flashbacks of the pulmonologist talking about having to go in and move the blood vessels off of Lily's bronchus. Blegh.

However, I think I will take a 'simple' problem like her bronchus being collapsed if it means her PH is not getting better. Its sort of the best of the worst scenario thing.

ARGH! Frick-a-frack-a-som-a-beech!

Anyways, the waiting game resumes again. I want the doctor to call me back like NOW. You know?

I'll edit this particular blog post as I find out more.

Christmas, Bible-Thumpers, and Non-Believers

I was thinking on this while driving to work this morning, and needed to get it out of my head...

Now, I call myself a Christian. I do this because I believe in God. I believe Jesus was the son of God. I believe He died to save us from our sins.

What I am NOT is a bible-thumper. I'm familiar with the Bible. I've read it cover to cover. However, its been a while since I've even opened one.  Its been several years since I've even been to church.

So, now that I've established that... let me just say...

Some people need to SHUT UP. I was reading various posts on Christmas, Jesus, etc...and non-believers were taking great joy in pointing out that December 25 was a pagan holiday long before Christ was 'supposedly' born. That we didn't know what we were talking about, etc. Of course, others were coming back at them and (I'll admit it, basically getting their butts handed to them) saying that yes, it was. That December 25 was the day he was born, and yadda yadda yadda.

My response to this is: I don't care what date he was born on. I'm celebrating his BIRTH. I'm not celebrating the day he was born. He could have been born on January 3rd for all I know, but, guess what? I'm going to celebrate his birth on December 25th. Why? Partly because that's how I was raised, but mostly because I realize that its the thought that counts.

Jesus could have been born on December 25th. Maybe God looked down, wanted to ease people's way into believing in him, and decided that that day would be the day Jesus was born. If you believe in the Bible, you believe in the Virgin birth. God knocked up a chick who had never had sex. You think he couldn't point a finger and go "Be born today" ??

On a side note, I can't believe I just put "God knocked up a chick". LOL! Well, you guys knew what I meant.

They talked about the pine tree, and how it had been a pagan symbol too. Something that people had gathered around in worship of life, or something like that. Well, gee, and the problem with us continuing to have a Christmas tree is.......?? I have a Christmas tree. I don't worshp it/ around it. Its a very pretty fake tree that I hang shiny baubles on so Lily can look and go "wow!" and it gives me a reason to torment the cat with the a water gun. To me, while the Christmas tree is a part of the holiday season, it is not something that I link with the birth of God's son. Its what we put gifts under, and hang shinies on. I celebrate Jesus' birth on Dec. 25th. I'm putting up the tree, however, for my personal pleasure. Not as on offering to Him.

For Him: I sing Carols like Silent Night, and I feel the joy and peace reverberate through me. For Him, I'll hold my daughter on my lap, and finally open the bible again. I'll read to her the story of Christ's birth. For Him, I'll give her snuggles, and thank Him for blessing me with her.

For me (and the family): I'll put up the shiny christmas tree. I'll buy presents to make people smile. I'll cook food so that we have a nice family dinner together.

There's a big difference between the stuff I'll do for Him and for me. I might do them on the same day, but there is still a big difference there.

And,you know what? I'll admit that maybe I'm doing it the wrong way. However, its the thought that counts.

I also, for the record, believe that we are in the End Times. Doesn't mean I'm going to shove it down your throat, but there it is.

So: Have yourselves a merry Christmas, everyone. To the people who take great joy in trying to rip other people's beliefs to shreds: Have yourself a merry Christmas, and grow the heck up. Asshats.

We all have our own beliefs. Deal with it. If you want to give yourself a happy right now, I'll give you some of my daughter's viagra. Same result, less annoyances to deal with.

Stand up

Its a bad day today. I don't know even how to explain it. Its just a bad, bad day emotionally. I think I am still feeling the stress of Lily being sick. I think I will always feel that stress, just some days I'm better at dealing with it than others.

My boyfriend texted me yesterday morning, and asked what Lily's Tracleer dosage was. I told him. He texted back that he thought that was what he had given her last night, but he's so cloudy from being sick. We've been giving the medication to her for a month. It irritated me, and worried me. It feels like the point is driving home more and more that I need to find a way to stay home and take care of Lily.

I don't want to. Its selfish of me, but I don't feel like I'm cut out to be a stay at home mom. I need that time away from her. I love her to death, but I need a break from her sometimes. I don't know how I'm supposed to do this. how I'm supposed to keep handling this.

Sometimes I wonder why I even try. Its not like anything I can dno can make Lily better. I know why I try, though. I try because I love her, and that will never change. I will always do my best to take care of her. Its just that my best obviously isn't good enough.

I'm not good enough.

I feel like I'm failing at all parts of my life right now. I couldn't produce a healthy baby, I can't produce enough energy to care about my job. I can't be the type of friend that I should be to my friends - I just don't have the energy. Its hard for me to even clean the house.

I've always battled depression, and this is definitely a down-swing for me. I fight it off as much as I can, but it seems like things are just getting too much to handle. Don't worry. I'm not suicidal. I would never leave Lily like that. I justdon't know what to do anymore.

I can feel myself disconnecting from people. Conversations are forced because I know I need to talk to people.

One of my friends made a post about how the squeaky wheel gets the oil, and another friend posted but sometimes people get tired of hearing about  the squeaky wheel. I wondered if they were talking about me. I know I talk alot about Lily's problems, and how bad things are right now. Maybe I should stop that. They might not have been referring to me, but that's immediately what popped into my head.

Maybe I have been leaning on people too much lately. It seems like I've always done best when I had no one to depend upon but myself. Maybe I need to start that again. I don't know.

At one point I held hope that life would get better. That I would get through all the crap that life has thrown my way, and come out on top somehow. That's obviously never going to happen. Things are never going to get better.

I can pretend they are. I can try to fool myself. I can laugh and smile and make raunchy jokes, and feel better for a few minutes. That's all.

I wish I was a better person. I wish the idea of staying at home with Lily didn't fill me with dread. That's a horrible thing to admit, but there it is. I'm not perfect and I will admit to it. If I need to stay home with her, I will. I'll probably have to go on medication to help keep me level again, but I will.

Things looked up for a few days when I heard Lily got approved for her medicaid. That was a blessing. That still is a blessing. Its just not enough right now.

I don't really even have the desire to drink much anymore. A beer every now and then is nice, but I realize that its too tempting. That with everything going on, it would be really easy to turn into the type of person I don't want to be.

I remember commenting to one of my friends that it was a fact of life that bad people got whatever they wanted, and good people get kicked while  they are down. I have to wonder what good people get from life then. I guess its only seeing how many times you can stand back up after you've been knocked down.

I wish I could take Lily's sicknes upon myself. I wish I could give her a better, stable life. I can't though. So I'll just have to teach her how to deal with it, and hwo to start standing back up. That is, if she doesn't die on me. Can't forget about that.

Now that's one thing I probably won't be able to stand back up after.

A cure...

What would happen if there was a cure for ?

Its something that I've been thinking about since reading the article about AIDS having been cured. (It was not cured. There was ONE man who, under special circumstances, is HIV-free (seemingly) right now.)

What would happen if there was a cure for any terrible disease? Would this cure be mass-produced and distributed at large to people who needed it? Hah! If you think so, I admire your rosey outlook on society in general. Well, partially admire it. Mostly think you're a optimistic idiot. No large drug company is going to be that kind.

They will recognize that people suffering from will pay anything / do anything to be cured. The price will be enormously high (Need I remind you one of Lily's meds is 5000 dollars a bottle?), and demand will far outweigh supply. 

Charity programs will be set up so that pharmaceutical companies can trumpet their kindness for all the world to hear about. qualifications to get into these programs will be insanely hard to reach.

You'd see headlines about people dying from the disease because they couldn't afford the cure. About people dying because they didn't get the cure in time...the disease was too advanced.

Then, maybe 15-20 years down the road, prices will finally be driven down a bit. Deals will be reached. The medicine will be more accessible. Maybe then, will be mostly cured. However, until humans in general can let loose of their greed, and self-serving interests, that terrible disease will only be cured for select groups. The rest will be in a figurative lottery to get the few free doses that sporadically come up for grabs. 

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Okay, that was random and didn't have a ton of coherency, but that's what happens when I have a beer in me sometimes.

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Lily is with Kyle at his parents house. Momma has cheesy horror movies and a 6-pack of beer.


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I...am.

I believe every post I've done has been specifically about Lily or her problems and dealing with them- and that's great. That's primarily what this is meant for. However, in this post I'm going to ramble a bit, I think.


I asked on FB today - "Remember when we were actual people, mommas?" I love my daughter to pieces, but I feel like I've lost a good portion of my identity to her. That's not necessarily a bad thing, its just something to reflect upon.

Even when she is at someone's house, I still think about her. I think I can't get shitfaced because she might need me. I call to check on her. I'm so exhausted generally that I don't want to go out and party or something. I just want to take a long bath, read a good book, and go to sleep.

I can't remember the last indepth conversation I had that didn't involve her. I used to know Arabic. I don't remember anything more than the basic greeting now.  Its amazing the things that I'm not anymore. So I'm going to amuse myself and list what I still am.

1. I am an avid reader. (Baby or no baby, I need to at least read a couple chapters every day.)

2. I am opinionated.

3. If I were a jewel, I'd be a diamond. I'm ridiculously strong, and yet just hit me the right way/with the right thing, and I'll shatter into a thousand pieces.

4. I am a dreamer. When I'm laying in bed at night, I dream about what it would be like to be loved. What it would be like to be special. What it would be like to be something more than I am.

5. I am a potty-mouth. You have seen evidence of it. The F word is probably my favorite, but I have a triple-threat that I pull out when I'm really frustrated. Sh**! *stomps foot* F***! *stomps foot again* D***! *slams hands down on nearest surface* When I get to that point, people are generally backing away from me.

6. I am a believer in God. I have my issues with him. I hate him sometimes. I love him others. However, no matter how I feel about it, I believe that He exists.

7. I am a dog-lover, and a cat-hater. Well, I hate all the friendly cats. I like the aloof ones who only love you for your food.

8. I am someone who cares too much about things, but shows that I care too little. Defense Mechanism.

9. I am intelligent. Half my brain-power is on Lily right now, but I've intimidated more than a few people intellectually.

10. I am a sex fiend. I'm often too tired to do anything about it, but I love me some raunchy sex!

However, you know, none of those is as important as this one...

11. I am a mother.

My daughter is my present, and my future. The past is behind me. No point in dwelling on it. I've got enough to do just dealing with the present, and running from the future.

Oh, yeah..

12. I am sleepy.

Good news at last!

Well, as you all probably know, I've been struggling trying to get Lily medical coverage. It has been a huge worry! Medical bills have been piling up around my ears!

Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.

Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.

Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.

Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"

The answers were "Yes. November 1st. Its ongoing."

Thank you Lord! thank you thank you thank you thank you thank you!!

I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...

To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.

Again, Thank God!

So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).

Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need  a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.

Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.

Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.

So, pardon me while I go do a booty-shake.

Saying all the wrong things / Thank you for the Memory

There are certain things I'm told when someone finds out that my daughter has a chronic illness that drive me up the freakin' walls. I know people are trying to be reassuring/encouraging, but there are some things you just don't say. At least to me. Everyone is different, so I'll speak for myself only here.

Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.

"You gotta stay positive."
             No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.

"Well, they are coming out with new treatments for stuff all the time."
          No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.

"Maybe she'll grow out of it."
          If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.

What you CAN say:

"Dude, that freaking sucks!"
         This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'

"I'll pray for her."
        This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.

"Sorry to hear that."
         Its simple, honest, and conveys understanding of the situation.


I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
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A memory:

I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.

I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes".  She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.

Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"

"No."

"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.

"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."

"Cookie!" As I started to say no again, the babysitter spoke up.

"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.

The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.

Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.

All throughout the day as that memory has randomly popped into my head, I have at least snickered.

Thank you, Lily, for the memory.

Randomn Stuffs

I recently had to disconnect myself from a board full of people that I really cared about. I had to do it because I couldn't take it anymore. I couldn't take being around conversations about healthy babies. I couldn't take listening to people talk about how hard a time they were having because of their child having a cold, or chronic ear infections, or various other little things. I felt for them, I still feel for them, but I was getting to the point where I was wanting to scream at them.

I wanted to scream: SHUT UP! JUST STOP WHINGING! You have NO clue what hard is until you've had a baby with a chronic life-threatening illness. NO clue! You think ear infections are bad? Constant diaper rashes? Waking up all hours of the night still? Try looking at your baby and realizing that they could die any time on you. Try looking at your baby and realizing that the odds are AGAINST him/her even getting a chance to GROW UP.

I wanted to scream and cry. To throw things and slap people. Just from listening to their happy conversations. Just from listening to their very valid concerns/complaints. For those mamas who are coming to the board for support because they are having a rough time, I had to leave. I had to leave because I no longer had it in me to offer them the support that they needed. I had to be selfish, because I cannot be unselfish right now. I just don't have it in me. I care for all of them, and that's why I left. Because I knew, sooner or later, I was going to come out with a very hurtful rant...and I wouldn't even be able to say truthfully that I didn't mean what I said afterwards, because I would mean it. I would not be saying it to be mean or to be spiteful, but because its the truth.

That they don't realize how good they have it.

I worry about the other children who have health problems. A couple have heart problems, but thankfully they don't seem to be anything too serious. I know one mama's baby also has some type of thyroid problems. They are in my thoughts quite often. No baby should be sick. Ever. Also, there is the momma of the beautiful little girl with Autism. She seems to be handling it like a champ. I will always try to be there for her too.

......

I am so thankful for one particular friend. This girl is absolutely amazing. She's made bracelets and encouraged others to make bracelets for the Global Genes Project. She asks every day how I'm doing, how Lily's doing. She has done research on her own to find out more about Pulmonary Hypertension. She sent me a card one day recently that had me in stitches because it was so funny. She's willing to listen to me whine and grumble about how much life sucks right now. She is, in two words, F'king Awesome! I gladly give up my self-proclaimed title to this particular friend. Because that's what she is.

She wishes she could do more. She's doing so much right now. I don't even have the right words in me to express how thankful I am for her friendship.

I'm also thankful for the other mamas (and some dads) who pm me out of the blue just to see how things are going. I can't always respond to them because my day is that rough, but I feel better just knowing that they care.

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I'm pretty much constantly tired lately. I have trouble getting up enough energy to really play with Lily. I feel like I just want to sit on the couch and be left alone. I feel like of my immediate relations (Friends/family/coworkers) here in Columbus, I'm the only one who realizes how serious Lily's condition is. I'm the only one who is really watching out for changes in her condition. I won't say I'm the only one that cares, because I know I'm not...but I feel like I'm taking on all the worry without anyone here to share it with. Sometimes all I need is a hug from someone who gets it. I don't feel like I have that.

I've been grumpy lately. More inclined to anger easily. My 'fuse' is practically non-existant.

I really just want babied for a few days. Just cuddles, snuggles, chocolate, alcohol, and a big box of tissues to blow my nose on while I left myself break down and cry. Tangible things. Oh well. More's the pity.

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Oh yeah... I got laid last night. It was good.

Turning Blue

Last night, I laid Lily down on the floor for tickles. She flushed as soon as I laid her down, but it didn't really even register in my mind. Then I tickled her. Now, I know Lily has problems breathing, so I keep tickles very brief. I generally tickle for a bit, then let her catch her breath, and do it again.

This time when I tickled her (15-20 secs, max) and pulled my hands away...Lily was blue. Flushed red, and blue around the lips, temples.. I didn't freak out immediately because she was okay after I sat her up. Today I placed a call to the doctor...

The nurse's reaction that took my call was "Oh, my god." You NEVER want to hear that from a nurse. Ever. Anyways, she transferred me to another nurse, the one who works right under Dr. Daniels, and that nurse (Jennie) asked me a whole buncha questions, and said she'd call me back.

The results of the call back are we have to try oxygen 24/7 and see if that helps. If it doesn't, we have to put in a call to her pulmonologist. Its possible that Lily's left bronchus collapsed even further. If its not that, then its her PH.

I can't take much more of this. I really can't.

Just to hear you say that you love me...

I'd go and capture the moon
That's what I would do
Just to hear you say that you love me..
Just to hear you say that you love me..

-Fatih Hill, Tim McGraw

She was playing beside the computer, periodically looking over to see what I was doing. Occasionally, she was pressing buttons she wasn't supposed to touch, and she knew it. I had turned on music at dinner time, just to keep us entertained while we were eating, and left  it playing afterwards.

There had been a few fun songs come on, and I'd laughed as she'd bopped her red-head to the beat, and wiggled her non-existant butt. For the most part though, I was wrapped up in what I was doing. Then, Faith Hill and Tim McGraw singing "Just to hear you say that you love me." came on. I peeked at her, just to see her reaching (yet again) to touch the power button on my computer.

"You little booger!" I exclaimed, and rose from the couch to snatch her up from what she was about to do. She squealed, and I moved us to the center of the floor. I took one of her tiny hands in mine, and began to rock back and forth to the song, occasionally singing along under my breath. She grinned, her gray eyes sparkling, and tried to move to the beat too. A few seconds later, the chorus sounded, and on the word "love", I laid her back in my arms a bit, and spun her around.

Giggles erupted. The word came again. Her cheeks were flushed with color, and she was clutching my hand with all her strength as we went around another time.

I pulled her back up as a verse began, and she looked at me for a second, then leaned forward and carefully wrapped her arms around my neck, and laid her head on my shoulder. Suddenly, I was nearly a boneless pile of goo. This was, I knew, one of those perfect moments that needed to be written down. I would do it later. Right now, though, I was going to enjoy every second of it.

I held her close, a hand on her back, and slow-danced carefully with her. This lasted for a good bit of the song. Then, my red-headed heathen, in all her glory, looked lovingly up at me, and reach out a hand to my face. With the greatest concentration, and barely a twitch of her lips to betray her intentions, she closed her fist around one edge of my glasses, and took them off my face.

"Oh, you think you're funny? Is that it? You think you funny?!" I cradled her to my body, and spun us in circles as I playfully tried to retrieve my glasses. She laughed as I repeated "Gimme! Gimme! Gimme!" It was on. I suddenly hefted her higher in my arms, and began to gently nip at her sides. As peals of laughter sounded, and she squirmed to get away, I stole my glasses back.

It wasn't much longer after that when we sat down, and the song ended. However, that particular memory that we made stuck with me the entire night, and I knew that today it needed to be written down. I'd written too much sad stuff lately. It was  time for a happy.

Being Thankful and Remembering Cora

The main part of yesterday was a horrible day for me. I had tears in my eyes quite often. I just couldn't get Lily's situation out of my head. I was sad. I was mad. I was wondering why everyone around me seems to have healthy babies, and MY baby has problem after problem.

I blamed myself. I still blame myself. I could have done things differently, or something.

I leaned on my friends, though, and they helped pull me through it a little bit. It still felt like I was preparing myself to say goodbye to Lily at any point though.

However, then I saw a post from one of my friends about Cora. Cora's mom had thought she was bringing home a perfectly healthy babygirl. Cora abruptly passed away from an undetected heart defect during breastfeeding. She was only like 5 days old. http://www.corasstory.org/. Today would have been Cora's first birthday. Kristin, Cora's mom, is an awesome lady who has pushed so hard to make testing for CHD a requirement. She's encouraged others to spread the word to pregnant friends about demanding to have a simple pulse-ox test done before they leave the hospital with their new baby. Its non-invasive, just a little band with a monitor in it wrapped around their toe.

Its something simple, cheap, and easy - and yet its not a standard test. Why? Why do we not have this test done when it could save lives? Its ridiculous!

I have to remember that I am blessed for each day that I have Lily in my life. That if 2 years or 5 years, or even 10 years is all that I'm meant to have with her, its still 2/5/10 years that I HAD with her. Kristin had Cora for 5 days. FIVE days! Take a look at your baby. Could you imagine only having that beautiful little presence in your life for five days? I have had several wonderful months with Lily so far, and I'm thankful for every single one of them.

When I feel like everything is dragging me down, I need to remember that I am blessed to have had the time with my daughter that I've had. That no matter what happens, I will have so many memories of her. That she has touched so many lives already, and she's not even celebrated her second birthday yet.

When you look at Lily, you don't see 'sickness'. You see firey-red hair, chubby little cheeks, and a bonfire of personality shining out.

(((This is Noah and Lily. They are 3 days apart. They had a very long playsession on Sunday)))

When I look at Lily throughout the day, for the most part I forget that she is sick. I see a normal little heathen who takes great joy in driving her mommy up the walls.

Then comes nighttime. With nighttime comes oxygen. As soon as I put the oxygen on her, everything comes crashing down on me again. However, even though Lily throws a fit when the oxygen is going on... I'm shortly confronted with this...

Oxygen on, hair up in pigtails to keep it from getting caught in her tender-grips, and laughing at seeing herself on the computer screen. You barely notice the oxygen. Again, all you see is the personality.

For someone who is unarguably sick, Lily has the passion and zest for life of five healthy children. For as sick as she is, she's hardly ever in a bad mood. My rugrat laughs and runs, gets into stuff she shouldn't, and requests tons and tons of mommy cuddles.

My friends tell me that they think of "Li'l Bee" often. So many of them check up on her to see how she is doing. She apparently melts quite a few hearts.

Its amazing how much someone who can barely talk can touch so many people.

Soon, Lily's story will be put 'in publication'. The Pulmonary Hypertension Association has asked me to write an article about Lily and the struggles that we have been through. I gladly agreed to do it. If Lily's story helps even one family of a little one who has been diagnosed with PH, I will write as much as they want me to write. It'll be in one of their PHA Pathways quarterly newsletters, and also listed on their site, in the "Journeys" section.

I still feel, in my heart, that Lily is not going to get a chance to grow up. Its this sick feeling in my gut that says you have to treasure every second, because you aren't going to have many more of them. I hope I'm wrong, but I don't think I am. Its not just the diagnosis of PH, either. Its something that I've felt ever since she was diagnosed with her initial health problems. I just don't tend to talk about it much.


---

Anyways, I was in a horrible mood yesterday. However, when I got home, the first thing I heard was "MOMMMMMMY!" "MOMMY!MOMMY!" and I had a little monster running straight at me for some 'loves'.  Then, throughout the night, its like she knew mommy was having a bad night, because the trickster side of her was out in full force. She had me near tears a couple of times, just from doing things like poking a button on my computer, and then looking at me, with her lips in a perfect "O" of surprise, and sucking in a big breath of air like she'd just discovered something earth-shaking.

---

One day I want to put together a book of 'memories'. I want all of Lily's family, including those who are a thousand miles away, and only see her through pictures and words that I write, to be able to tell her about her life from their perspective. To let her know how special she is, and how she has touched them. I want her to have it /I want to have it.

Now, dammit, I gotta go, cause I've got tears racing down my cheeks.

---- But before I sign off... I just want to say Happy Birthday, Cora! You will never be forgotten!

Thanksgiving

I picked Lily up from the sitter last night. Found out she was running a 102 temp. Ugh! Luckily, some tylenol really helped her. She seems like she's doing better today.

I can't wait to be off tomorrow. Do nothing but cook, play, and eat.

I'm excited for her. I hope she feels up to pigging out on all sorts of goodies.

I decided to a mini-list of things I'm grateful for:

1. My daughter - for all the troubles that she has, she's still a blessing.
2. My friends - I have very few friends that actually live near me, but the internet is a wonderful thing. I have so many friends who I can rant about men and various other things with, or just talk. Knowing they are there when I need them is a great thing.
3. My job - I don't particularly like it, but it does pay bills. In this economy, even having a job is something to be super, super thankful for.
4. Having a car that runs, even if she protests sometimes.
5. A roof over my head.
6. Food in my belly.
7. Pepsi. 'Cause Pepsi's just awesome.
8. Supernatural - because those two men have given me some very nice fantasies.
9. Outrageously printed socks. Just because everyone needs fun socks.
10. God - because....well, I don't know exactly. Just because.

Things to Say

Some of things you say about your child that you would never expect to hear yourself say...

"I think Lily's part frat-boy and nobody told me."

My child is very gassy. To make it worse, when she farts, she will peek up at you and then bust out this huge grin. You know she's proud of herself.

I'm ordering a sign from MLP decals that has a no flames symbol on it, then below it says "Oxygen and OTHER gasses present" with a stick figure of a baby with a stinky diaper beneath it. I'm going to hang it on her door.

Something you would never expect to have to say to your child:

"Stop licking candy wrappers from the trash bin!"

Whenever there is silence in the house, and she's there...you know she's doing something she shouldn't. I just didn't expect her to dig through our daily pail of dirty diapers to find a twix wrapper...and lick the chocolate off. At least I hope chocolate was all that was on it.

--------

We got Lily's Tracleer yesterday. She started it last night. I have to put on gloves, get a pill from the bottle. Then, I dissolve the pill in 10 ml of water. Finally, I draw up 1.52ml of that suspension, and give it to her.  They only make Tracleer in two strengths. The lowest strength is 62.5 mg, so obviously that's a little much for her.

Poor baby was miserable last night. Snotting so bad that she actually had to sleep without her canula, because it had mucous in it. We have others that we could have put on her, but figured it wouldn't do any good.

Today is a good day for me in terms of how I'm doing emotionally. It is a 'normal day' so I don't feel sad or anything like that. I'm eager to go pick her up and give her some snuggles.

----------

A friend of mine on facebook posted about how she loved that other March babies were doing so well, but it kind of bothered her because her child wasn't doing as well. Her child is a gorgeous little girl recently diagnosed with autism. She wondered if there was something wrong with her for the fact that she was disappointed that she didn't have a perfect 'normal' baby. I didn't say anything to her because I didn't know what to say. I wanted to say so much though.

Luckily another march mommy had the perfect words. "Its okay to grieve for the loss of normal."

I wished I could make her understand that I know what she means. That I grieve for the loss of a normal Life for Lily all the time.That you can still be happy with your baby, that you can still treasure every moment with them, and still grieve for what might have been, or what would have been. With Lily, I grieve for her because I can't see her participating in a lot of the active play that is a part'n'parcel of normal childhood. I can't see her riding a bike because of the toll it will take on her breathing. I don't think she'll ever be able to ride rollercoasters at Kings Island because it wouldn't be safe for her. I grieve for the memories we will never make because of this disease.

In some ways, I have it easier than this Momma, because Lily can communicate with me. However, I think its easier for me to put myself in her shoes than for the mommies who have perfectly healthy/normal babies.

I wish I could give her what I cling to - which is the knowledge that the memories that we make with our children are so much more special because we won't ever a lot of those 'expected normal' memories. That our celebrations are ten times more joyous because  the struggle to get to that point for our babies was twice as hard, if not more.

I just didn't know how to say it to her.

However, I have faith in her- she is an awesome momma, and that little girl will rock some serious socks =)

----------------

I grieve for the loss of the life I wanted Lily to have. I grieve for the dreams that had already taken root within my heart. I grieve for normality, when I've never had it to begin with...

--------------

NO!

Lily, do you need a diaper change?

NO!

Lily, do you want some food?

NO!

Lily, come here.

NO!

Lily, are you sleepy?

NO!

......I take that back, I have had normal a couple times. LOL.

For all that I know, it still feels like a death sentence...

In honor of spreading the word about Pulmonary Hypertension, on the PHA's Blogging day, this post will be all about Pulmonary Hypertension. Some of you may have heard this information before. Some may have not. Feel free to link anyone to this post if they have been diagnosed, or have had a loved one diagnosed with Pulmonary Hypertension....

Lily - not even 2 yeares old - has Primary Pulmonary Hypertension

First off - I'm not a doctor. I'm not going to use a lot of medical words. I'd probably get half of them wrong. So I'm going to break it down as nice and simple as I can.

Q: What is pulmonary hypertension?
       A: It is high pressure in your heart and lungs. Specifically, how hard/much pressure the heart has to use to squeeze blood through your pulmonary artery.

Q: So, its like high blood pressure then?
     A: Uhm..in the way that a 1 dollar bill is like a 100 dollar bill. Both are printed on the same paper. One is vastly different in terms of effect it has than the other.
          Hypertension can be deadly. However, it is manageable, and in some cases if you can negate the circumstances that lead to the hypertension, you can negate the hypertension itself. PULMONARY HYPERTENSION HAS NO CURE. No amount of 'eating right' or anything like that is going to make it go away. A lung transplant might...a heart lung transplant might...but do you really consider something that drastic to be a cure?
                       Side note: I solidly vow to shove my boot up the next person's rear who makes a comment about how "oh, my (so-in-so) has hypertension" or "Maybe she just needs to exercise more" etc. I have boots with five-inch heels. Don't be stupid. THINK before you speak.

Q: What causes Pulmonary Hypertension?
     A: Depends. If Pulmonary Hypertension (Herein called PH) is related to a heart defect, a medication/pill you had once taken such as Phen ..something. I can't remember the name of it. That diet drug... It is called "secondary pulmonary hypertension". The prognosis for Secondary is generally a bit better. GENERALLY. Not always. Now, if the doctors can't figure out why you have PH, its either called Idiopathic (unknown cause) PH, or Primary PH.

Q: Why haven't I heard of PH before?
    A: Because its a rare disease. If you don't believe me, look up NORD and Pulmonary Hypertension.

Q: How rare is it?
     A: The last estimates I read said 2 in every MILLION people. However, it could be more prevalent than that. There is now some research that indicates a good portion of SIDS deaths are caused by PH.
                  Q: Babies can have PH?
                            A: ALL babies have PH in the womb. Then, when they are born, those pressures drop dramatically. However, in some cases, they do not. Unfortunately there is NO standardized newborn testing which would indicate PH. Symptoms generally present as labored breathing, blueish skin, etc. However, the baby could present perfectly fine in the hospital, only to have it develop rapidly a few days later. Rapid on-set.   Now, I'm going to say something. I'm going to say it in  Bold, Italic, and Underlined. So, just be aware. Because, duh, this is freagin' important.

IF YOU HAVE HAD A BABY, AND YOUR GUT IS TELLING YOU SOMETHING IS WRONG....BUT THE PEDIATRICIAN IS SAYING EVERYTHING IS FINE...DON'T LISTEN TO THE PEDIATRICIAN. PUSH TO HAVE AN ECHOCARDIOGRAM DONE. THIS IS THE ONLY SURE-FIRE WAY OF GETTING A GOOD ESTIMATE OF THE PRESSURES IN THE HEART.

Get it? Got it? Good! Most run-of-the-mill pediatricians/adult doctors have never even heard of Pulmonary Hypertension. So don't fool yourself by thinking 'oh, my doctor would tell me if something was wrong with rugrat/me.' Don't be stupid. Be empowered.

Q: What's the life expectancy for someone with PH?
      A: This depends. It depends on how early the person was diagnosed. It depends on how well they respond to medications. It also depends on how well they obey basic tenenaments of self-care like "Take. It. Easy!" In the 90s, someone diagnosed with PH had an expected life span of three years if left untreated. For children? 10 months. Now, with treatments, doctors have managed to extend the expected life-span of someone with PH to 10-12 years. Obviously, there are people out there who have lived longer, and people who have died sooner. It depends on how severe your PH is, and the other things I just mentioned.
              
                   Side note: So, yes, I am having to prepare myself for the fact that if Lily does not respond well to medications, my daughter is going to die, and die soon. Even if she does respond well, the prognosis is poor. Will she even live to see 21? After about 10 years old, when a child starts going through puberty, their reactions to vasodilators drops dramatically. So does the survival rate. So, even if Lily does well now, who knows if she'll make it past puberty??

Q: You say in your title "It still feels like a death sentence"??
       A: When speaking with an adult who has been diagnosed with PH, I asked if her if she thought that the diagnosis feels like a death sentence, and if she still does.  Her answer? "Yes". I, too, feel like its a death sentence. Unless there's some cure that miraculously arrives in a few years, this situation is NOT going to resolve in rainbows and kisses for everyone. My daughter has, effectively, been given an expiration date that will come a lot quicker than it should for anyone.

Q: What treatments are there?
        A: Flolan, Remodulin, Sildenafil, Tracleer, Lasix, Letairis (sp?), Oxygen.  Those are the ones I know about.
                Let me break that down a bit more: Sildenafil (also known as Viagra) and Lasix are two common, low-risk treatments. Lily has been on those for longer than I care to remember. The Lasix gets the extra fluid out of her body, making it easier on her heart and lungs. The Sildenafil is a 'vaso-dilator' (vessel-expander). You know how a man takes that little blue pill, and gets a happy? Its because it opens up the blood-vessels more, and allows his 'little head' to get more blood-flow/oxygen, etc. Well, same thing with Lily, except she doesn't get a visible salute going when it starts working because 1. she doesn't have boy parts and 2. its working on her heart.
           
               Tracleer - the only medication for PH that (as far as I know) comes in Pill form. Tracleer has some SERIOUS side-effect possibilities. Like, you know, if you get pregnant, your baby might have no head...or two heads. That type of thing. There is also a serious risk of liver damage. To the point you have to have a blood-test for liver functioning every month before you can continue to take the medication. This is what Lily is going to be on. Tracleer is 5,000 dollars a month.
                    
                 Oxygen - I shouldn't HAVE to explain this...but just in case. Oxygen is a medicine. Yes. A medicine. Putting Lily on oxygen at night has ensured she gets a healthier sleep, has increased her energy levels, and helped her heart and lungs a little bit. Lily is lucky to be on it only at night. Some patients with PH have to be on it constantly.
                       
                     Flolan, Remodulin, and Letairis are out of my realm right now. I just know that one of them is an inhaler. One is administered via a catheter leading straight into the heart. One is administered subcutaneously. I think Flolan is the one straight to the heart. I do know with that medication that you are required to be hooked up to a continuous infusion to help keeps things level. If for some reason your pump would stop working? You have 5-7 MINUTES to fix it, and get the medicine going again. If not, well...lets just say you should always keep an updated will around. The consequences can be that serious.  All of the medications I just talked about in this paragraph also have serious side-effect possibilities.

Ok, so, now that I've written everything I can think to write without your eyes glazing over...

This is what I'm dealing with. So, pardon me if, over the course of the next several months, I get a little grouchy and depressed.

Also, let me list a site for you.... http://www.phassociation.org/

Wonderful website.

If you have any questions, you can ask me and I'll try to answer them.

Regular bloggy-update on Lily coming later.

Been a While

Its been a while since I've updated this. Real life has a habit of getting in the way.

First off...

The little rugrat is doing just fine.

We went to the specialist on the 16th, and he said that while her blood pressure was high, and did need controlled - she was obviously happy, mobile, and not too far behind - so why mess with things just yet?

That was a relief.

She's doing great at the babysitters, and has become VERY vocal. It seems like she's always saying something, even if none of us have a clue what it is ;). Its times like this where I can relax my worrying about her a little bit, and just pretend that I have a normal, healthy baby.

I started a new job. I'm working with NCR. Hardly anyone has heard of it, but its a HUGE NPO. I'm going to be a site manager for one of their facilities. The pay is good, but the hours are long.  I feel bad because when I come home from work, I don't really have the energy to do anything with Lily most of the time. Even getting up and taking a walk with her can be hard to do.

Lily still isn't standing, or even attempting to stand on her own. Apparently her leg muscles are really weak still. However, her 'crawling' muscles are apparently in top shape! She's getting very, very fast, even though she just army crawls.

This morning, as I flopped over in bed, it hit me that I know exactly where Lily gets her weird sleeping positions from. Me. I flopped over onto my tummy, crooked one leg up frog-like beside me, and stuck that same side's arm under my body. I've seen Lily in that pose several times, and thought "that can't be comfortable" . IT SO IS.  LOL.

Its getting beautiful out, so when I do have the energy to take her for walks, I enjoy it so much. We don't just walk though, we stop and investigate everything. I let her feel the different leaves, feel the bark on trees, we talk about flowers, and I let her pick dandelions. Occasionally I let her ride on my shoulders.

I'm so tired right now it hurts just to have my eyes open. I'm thinking about trying to take a nap. Luckily, I had a training this morning, and then a housing expo, so I was able to come home early. Lily is still at the babysitter. If I'm going to pay the woman 350 every two weeks, I'm going to quite happily sit here and enjoy my free time!! LOL.

Lily is having trouble eating meats, which is kind of strange. Even the super-soft ones, and broccoli, which she normally devours. She just chews it to death, and then lets it sit in her mouth. I'm not quite sure what is up with that.

Anyways, that's really all I have to say.

Joys and Preciousness

You know, I'm not one for touching much. I was, once upon a time, before things happened that made touch repulsive to me. I used to enjoy cuddles and hugs, just leaning against someone.

Now? My natural instinct is to duck when someone comes at me to give a hug. To step back when someone tries to give me a simple high five. I was concerned that when I had Lily, this would carry over into my dealings with her.

To a point, it has. I don't like to hold her for more than a few minutes at a time. It drives me nuts when she absolutely MUST be touching me, even if its just a foot on my leg while she drinks her bottle. I prefer interacting with her from a short distance away.

However, as I type this, she's sitting beside me on the couch, leaning her head against my arm, and chowing down on a Earths Best Teething Biscuit. Even though it makes my skin crawl, and I want instinctively to move away from her... I recognize how precious times like these are. Lily will be my only child. She will only have one childhood. I will only have these times of peace and innocence for a brief period of time.

She has taught me to enjoy touch a little bit. Considering I hated touch (except for a good quick roll in the hay) before this, even enjoying it a little bit is a miracle.

There are times, lately, when she will just lean over, and lay her head against my chest, and take a deep breath. I know she won't remember this when she grows up, but its like she's deliberately making a memory...imprinting my feel and smell into her mind.  I think that even if she doesn't REMEMBER it, she will know it. She's reinforcing, time and time again, that I am safe, and warm, and that she can come to me for comfort and love.

I can only hope that I never disappoint her.

I can only hope that I can be a role model for her.

I am scared that I will not be able to be that. That my past will entangle me yet again.

I found myself feeling frustrated that Lily is so far behind developmentally, yet again. Then, yet again, as she leaned forward, looked deep into my eyes, and then laughed at me... I'm reminded that in some ways, I am lucky. I have the pleasure of the innocent coo and gurgle, laugh, and snuggle stage much longer than other mommies of March do. I have more time to treasure the 'infant' stage, more time to do my own memories before Lily moves on to crawling and talking, walking and yelling.

Its a precious gift, with that way of looking at it.

Speaking of...

Today we had Lily's speech evaluation. They deemed that she was not far enough along developmentally to benefit from intensive speech therapy. So, we will have it once a month for now.

That's fine with me...my schedule is pretty full with Lily appointments as it is. Besides, the therapist said it was clear that we were pretty in touch with the therapies that Lily needed, and it was obvious we worked with her quite frequently.

I wish I could get her to say something other than "Ma". She seems to have even forgotten how to make the "Ba" sound, because she's all wrapped up in ma ma ma ma ma ma ma.

Now, it gives me the warm fuzzies to hear her say ma ma, but she needs to move on, and add another sound to her repertoire.

The therapist also asked if we were doing sign, and said that it would definitely be a good idea for her... give her a feeling of more control about her communication. So, hopefully she'll get to that point soon. I want to be able to teach her, and learn it myself, but not until she is ready.

I'm so tired it isn't funny, and Lily has yet another doctors appointment tomorrow. Lovely.

However, this an appointment with the new pediatrician, so hopefully the one we get this time will seem confident, and actually listen to me.

Snow, Feeding, and Constipation

So, Lil had been constipated since wednesday before last. When she went to her pediatrician, he wasn't worried because she was in a good mood, and her stomach wasn't taut. Even said she still had an appetite. Before she got constipated, she was eating all of her bottle. After she got constipated, it went down to 2-3 oz again.

So, yesterday, I called her GI and he called in a prescription for her. It was supposed to take a day to work. Within 5 hours she had 2 blow outs. I love her GI, he actually listens to me.

To moms out there: Trust your instinct, not always what the doctor says.

Lily's still asleep, which means I have time to actually update this thing.

She had therapy (occupational) yesterday, and we worked on Feeding. Beth got her to eat so much more than I normally can. I was a little jealous, but that doesn't make sense - she's a therapist. She's trained to do this stuff, of course she's going to have more luck.

When reading a post on WTE, I read about several mommas who already have their kids on sippy cups. We aren't even planning to try Lily on a sippy until 13, but most likely 15 months.  Its a little thing to be upset about, but to me its just another sign of how far behind she is.

Kyle and I worked on standing and crawling with her last night. I got her on her hands and knees, and he distracted her so that she was looking up, and not realizing what was going on. We actually had some success. She stayed in that position for a few minutes. We had similar luck with standing.

I realize, with Lily especially, its all about repetition and muscle building. If we keep working with her on it, she eventually gets it and becomes able to do it on her own. If we leave off for even a couple days, though, we have to start all over again.

Sometimes I still get depressed thinking about everything, and I try to remember then that I have to count my blessings. If we hadn't gotten Lily's surgery, she might not even be alive. If she didn't have so many therapy visits, and I didn't work with her so much, then she might be much, much further behind than she currently is.

On the 18th, we have her neurology appointment. Its the big one where we find out more details on her head ultrasound, and where to go from here. I'm nervous about it. I wish some of my friends lived closer. I'd like her to be able to interact with other children, and not just mommy and therapists and stuff.

I had a nightmare last night that I had gotten pregnant again. I was so against being pregnant again that in my dream, I was trying to gather the money to have an abortion even though the father was begging me to keep the baby. I love Lily so much, but I never want to go through this again.