The Better Parent... is not me.

My boyfriend is, hands down, the better parent to Lily.

Its disturbing to realize. I'm her mom. I should be the best parent for her. Right? But, I'm not. Hey, at least I can admit it.

I am wrapped up in Lily's medical problems. I think more about them, sometimes, than I think about her. I'm constantly thinking about it, researching it. I'm the one, during her bad spells, that is on the phone with the doctors, coordinating things and getting test results.

I am pretty much constantly tired, so its hard for me to get up the energy to even want to do anything with Lily. (I do force myself to take her to the park and such, though.) I do not like people, in general, so if we are at the playground and have it to ourselves...then another group come along, I will immediately pack Lily up to head home. This has already caused Lily some issues in associating with groups of kids. (She prefers to sit while the others play, and play by herself while the others are doing something else.)

I lose my temper with her much more easily than he does. However, as an aside to that, Lily listens to me much better than she listens to him.

He lays down with her every night to get her to sleep. I'm of the mind we should just say goodnight, give her sippy, close the door and let her fall asleep on her own. (Now, I'm not totally heartless, if she's still crying after 10 minutes we can try something else...)

He helps her eat during dinner. I'm content just to give her the plate and let her go at it any way she wants to go at it.

I guess my only plusses as a parent are that I'm utterly unselfconscious about doing silly things with Lily. Go out and play in the puddles for a half-hour? Sure! Dance w/ her around the living room floor for 10 minutes straight? Of course! (Now, he tries to dance with her, but Lily won't let him...) Play in the faucet at the back of the house for 15 minutes on a hot day? Coming right up!

And yet.... for all his pros to my cons... Lily is more attached to me. That makes me feel guilty as hell sometimes. I'm the one Lily turns to when she gets a boo-boo. I'm the one Lily asks to carry her. I'm the one Lily goes to for snuggles when she's not feeling well. I'm the one who Lily steals food from.

I don't know what to think anymore.

I love my daughter. I do not like my two-year old.

I love Lily to pieces. She's the light of my life. She's also annoying the crap out of me today.

I'm just ill-tempered, and I don't really know why. She's not even being that bad, she's just being...annoying.

"Did you hear me?"
"Yes, baby, I heard you."
"Did you hear me, mommy? Did you hear me?"
"Yes, Lils. I heard you."
"Did you hear me?"

At this point, I crouch down in front of her, make eye contact and say "Yes, baby. I heard you. What do you want?"

It stops. Thank God.

Its a half hour until her bedtime, and I can't wait. I seriously need the little booger to go to sleep. I hate being in a bad mood with her, especially when I know its not her fault. I've forced myself to take her to the park the past couple days, even though its one of the very last things on my list of things I feel like doing.

I had called Dahlberg yesterday to set up Lily's new babysitter on the busroute. The driver said it wouldn't be a problem. He called me back today and said he wouldn't be able to do it. That it was outside his route. Like...2 minutes outside.

So, I called Dahlberg. Talked with the administrator, who said to give her a minute. She called back a couple hours later, and said she'd begged the bus driver.  She'd told him that if begging didn't work, she'd send him a sad-faced picture of Lily, and he would have no choice but to give in. He gave in. Haha!

So, Lily will go to Dahlberg for another year. The administrator said that they wanted Lily to continue with them, that she was such a joy - and with her fragile health, she needed them too. It was nice to hear a 'principal' actually caring about a student.

LI'l Bee

Lily is due home from her grandparents house today. I'm eager to see the little minx, even though I know after about an hour, I'll be ready to send her back. Haha. Bad mommy, I know.

I'm very grateful that my boyfriend's parents are willing to take her for a weekend a month, sometimes more if we need it. Its nice to know we have time to get things done. See, Lily is still very attached to me. VERY attached. I recently had a friend over this weekend, Abby (with Noah and Micah), and watching Noah and how good he was at entertaining himself made me realize how clingy that Lily is. Its not necessarily a bad thing, but a pain in the butt when you are trying to get things done.

Noah will take his mom's iphone and play games on it. He'll run around like a heathen, completely ignoring us. Lily....well, Lily needs mommy or daddy. Pretty constantly. She's getting better at it when it comes to watching Dora, but that's about it. She rarely plays on her own, she needs us to play with her. When she's eating, most mealtimes end with pleas for hugs and washing her hands. She doesn't like to go to bed on her own. We generally only get little 5 minute snatches throughout the day of Lily not needing us for something. Luckily, we both love playing with her.

We're hopefully moving this weekend, and getting a dog not long after that. I'm looking forward to having the dog. I think a dog is vastly different from a cat, and Lily will hopefully fall in love with it and be able to spend more time with it and leaving us to get things done.

We're looking at getting a boxer pup. It seems to be one of the best breeds for children. We're going to do everything possible to make sure Lily and the dog develop a strong bond. We already know we're going to end up taking the dog out on like six walks a day. At my boyfriend's house, she LOVES taking their dog on a walk.

I think a dog will be a welcome part of the family very easily. Not to mention I just plain out like dogs better. I love Posey, but I don't like him very much half the time! Haha.

I am so, so blessed that Lily has found that magic number with her medicine. That she's doing so much better. I love that I can 'race' her for a half block or so. That, even though it drives me nuts at times, she's always wanting to go to the playground. That she wants to be outside and playing. (Yay for a fenced in backyard where mommy can sit on the porch occasionally and let Lily run around safely in the grass!) She already has a tricycle. We're looking to get her a little slide because she adores the slides at the playgrounds. She'll have a big room to herself that we can set up to be the ultimate indoor play area. Not to mention the three season room on the back where she can play even when its raining.

My daughter is the light of my life, and I'm so glad things seem to be going in a direction where I can truly give her a good life. =)

Diagnosis: Impetigo .. and a "my-mare"

So, I had to take Lily to the Pedi tonight to get her feeding tube site checked out. The doctor (who annoyed the crap out of me) looked at it for a moment, and then at some red spots on her bum, and pronounced it to be impetigo.

I think the doctor is full of crap. My understanding of impetigo is it is contagious, and it causes a bad rash. Lily has 4 spots on her bum, and her feeding tube site is irritated...and its been unchanging for the past week. That doesn't sound like a bad rash. Considering Kyle and I also change her diapers, and we haven't had any sign of it... I call bullshit. However, I will faithfully apply the ointment and see if it helps.

The doctor was this younger guy who had one of the most annoying voices, and looked like he didn't have 2 braincells to rub together. Plus, he kept directing his talk to Kyle. Excuse me? I'm the mother here! I'm the one talking to you.

Grrrr.

Lily woke up late last night, crying. When I went up to her and asked her what was wrong, she told me that she 'had a my-mare'.  She cuddled close to me for several minutes, and when I laid her back down, she asked (In the saddest possible voice) "Mommy lay down with Lily?" It came out "Mommy yay down wif Yi-Yee?" Needless to say, Mommy closed up the downstairs, and went back up to lay down with her. 

Would be Typical, but...

So the oxygen company had to come out to do a spot-check on Lily today. I thought that was all it was. I go home though, and there's this itty-bitty pulse ox that she has to wear tonight, all night. Have you ever tried to keep something on a child's hand during the night? HAH. Its too big and weirdly shaped on her finger for me to be able to tape it to her.

I came home from work, and she greeted me at the door. Unfortunately, I couldn't pick her up and give her loves because I was on my monthly phone call with the Accredo pharmacy to reorder her Tracleer. Even if you are having the best possible day, just having to order that medication can put you down in the dumps. The reps are really nice, but it just brings to mind her health problems all over again.

Then I learn that we have to do this pulse ox monitoring all night. Blah.

Anyways, we did go to Marino's Fish and Chips restaurant. Their french fries are freaking awesome! Lily absolutely loved them. It was so odd. She didn't want to sit on my lap like she normally does. She wanted her 'chur, please.' So, we put her in a high chair, and gave her a little bowl of noodles, along with some pieces of shrimp, french fries, etc. It was so weird to watch her successfully feeding herself. Just one of those moments when you look at your child and realize how quickly they are growing up

After dinner, when we came home, she wanted to go on a walk. With me. Not with daddy. With me. She made that VERY clear. Part way through the walk, she saw some gnats  flying around her, and absolutely freaked out. I had to pick her up, and every time I tried to put her down, she tried her best to climb right back up me. Needless to say, that walk didn't last very long. Which, actually, was a good thing, considering I didn't want to walk in the first place.

Also, and yeah - I'm biased, I had one of those moments where I looked at Lily and thought again how pretty she was. Now, I'm the first one to admit she was an ugly baby...and she still has her days where she looks like a little jewel-belly troll, but I'm fine with that. I really hope she turns out as pretty as I'm thinking she will.

Then again, its not like she has a huge chance of living to be old enough to worry about her looks anyways, so what does it matter?

Sorry, that was the grump in me.

She also tried to read the Sleep Book to us tonight. SO cute!

7 months later...

I didn't realize it had been so long since I had updated this...

Lily is doing great. She really is. For the first time since birth, she's on the growth chart. 43rd percentile, to be specific, for weight. 15th percentile for height. 85th percentile for head size. So, basically, she's short and has a huge head,but her weight is okay!

We're transitioning her from pediasure to regular whole-milk.

She is talking so much now. Her favorite phrase of the moment is "Come back here!" She hates it when you get more than a few feet away from her. She's also fond of saying "Wow, that was close!" She's obsessed with the camera now - I guess all my picture taking has rubbed off. Just recently she put a hat on her head and demanded that I 'take a pit-chur'.  So I did, and she happily cheesed at me.


She goes in for surgery on Tuesday. Its just to repair her belly button. Nothing major =) Just finally fixing the droopy belly button. To be honest, I"ll kind of miss it. Her belly button has character. It looks like a smile. However, its because of herniation, so it definitely needs to be fixed.

We are so lucky that Lily is doing well. So many other PH kids are not.

Angel - 3 years old - On day 13 of recovery after having open heart surgery. She's not doing well. If there isn't some major improvement soon, her parents might have to make a very hard decision.

Riley - 4 years old - is now going to be placed on the transplant list.

Please keep these two in your prayers.

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.
-------------

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.

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.