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.