Clay...

If you asked me who I was 10 years ago, my answer would be completely different from who I am today. 10, 20, 60 years from now, my answer to that same question will different.

I change...and so do you.

We're all like clay rolling down a hill. We become pitted and marred during our journey. Some hills are relentless. Unmentionables temporarily stick to us, but fall off at the next bounce. While some things become permanently embedded into our "clay". And sometimes, our rough edges are smoothed out when we coast down more forgiving hills.

So if you ask me who I am, I say I'm clay.

I've been rolled down some pretty fucked up hills, but I don't give up. Irefuse to give up. Yes, I'm weary...I'm tired...I'm sad, but I am also tough. And believe it or not, happy. Even though clay is typically associated with being soft and pliable, I perceive my vulnerability as a strength.

I adapt...and so do you.

I've been under a lot of stress lately. I am not perfect, but I strive to be. Sometimes, "balls of clay" roll down the same hill, but move too fast to notice who is rolling right next to them. Life is hard for everyone. And, although I am unable to speak for the "ball of clay" next to me, I can speak for myself. I try so hard to be the perfect mother, wife, family member, friend, employee, student, citizen, etc. Yet, more often than not, I fail. I am less than perfect.

But who is perfect anyway?

I have learned that I need to stop beating myself up for things that I cannot control. Mistakes that I've made have NEVER been some evil ploy to conquer the universe. Some hills are better than others, that's all. And some hills are travelled alone or with someone rolling right beside you.

Half the battle is having the will to keep rolling.

Kevin & The Internet...

I stayed home and studied all day yesterday. John took the kids with him to my mother-in-law's house to give me some peace and quiet. Once they were gone, I dove into my books full force. This obviously led to a very mentally stressful day. At least it was until John and the kids came home. I learned something new about Kev yesterday. Apparently, Kev was using the computer at my mother-in-law's house when visited a questionable website.

And...he got caught.

Now, now, before you get any ideas I should mention that it was NOT porn site. (Thank goodness!) Nah, Kev hasn't accidentally seen one of those sites since he was two. Four years ago, he unknowingly clicked on a link someone had saved on their computer. Despite the fact that he was laughing hysterically at the big booty-jiggling he saw on the screen, he was TWO so I doubted any potential emotional damage would occur. (It was just a girl bouncing her HUGE BUTT so there was no penetrative sex involved. Not as bad as it could have been.) I was more dismissive back then because frankly, how much does anyone remember at that age? But six? Six is a different story. I'm not a prude, but I still heavily monitor Kev's Internet activities. A slip of the finger could wreak havoc on a young, impressionable mind. (And eyes.)

But alas, this was not the case! Kev typed the web address.

I wasn't supposed to know about it at first. John made a fatherly pact with Kevin to "not tell Mommy", but Anthony made sure that he blew their cover. Oh, revenge is a dish best served cold! Boo learned at a young age, I guess. I have a lingering feeling it was payback time for the two-cents Kevin threw in during the Metal Ball of Doom incident. In any case, as soon as they came home Anthony blurted out,

"I'm telling Mommee what you did Kevie."

This is the conversation that followed:

Me: (to John) What did he do?
John: Shh..just forget about it. (Kev scampered out of the room.)
Me: No, what did he do? John, no fair. No secrets when it comes to the kids. No good cop, bad cop stuff. Tell me...what did he do?
Anthony: (Devilishly shifting his eyes & licking his lips.) Kevie went ona website and looked at the girls butts. I sawed him dood it!
Me: Kevin, come here please. (He was eavesdropping outside of our door. He ran in and quickly sat down next to me.) What website did you go on?
Kev: fart dot com (He was looking down.)
Me: What? Where? (I had to stifle my surprised chuckling.)
Kev: fart dot com (He was looking at me with huge, confused eyes.)
Me: WHY??? (I was definitely giggling.)

Now, by this time John was shaking his head and smiling. Laughter is contagious in our household so if either of us "parental units" start to giggle, the other will sure follow. (Pat on my back for being able to keep my composure....NOT!) Relieved that he wasn't on howtokillyourmother.com, I couldn't hide my amusement any longer. I totally lost my "stern Mommy look". Any chance of me appearing as an authoritative figure went completely to shit. (Way to go, Tiff!) Of course, Kev's irresistible dimple emerged once he saw all of the seriousness melt away from my face.

What can I say? The K.I.D. knows my weakness.

Kev: "Well, I'm just really smart..." (his dimple already reached maximum depth)
Me: (I sterned-up a little) I know you're smart, but that website is for adults. You should know better than that. Going on fart dot com is unacceptable. How do you know how to spell fart?
Kev: Well, Ate Ashley showed me....
Me: Well, I don't care who showed you, no more fart dot com. Only educational websites like sprout or noggin. Once you're big and you know everything, then you can go on there. When you're tall like Daddy, then it will be okay. But for now, you're still too little and that's a big-people website. Got it?
Kev: Yes, Mommy.
Me: Anthony, you too, okay?
Anthony: Yes, Mama.

I mean really, what else could I say?

I didn't want to reprimand him for being curious about the opposite sex. It is completely normal, after all. I'm want to raise my kids to have high self-esteem so I try not to instill social stigmas about sex. I said my piece and let it go. (I had a good laugh about it later since this parenting stuff is just plain funny sometimes.) I also made a mental note to make a "motherly assessment" on the content of that website.

I did it today.

School has *momentarily* stopped kicking my ass for the evening. (Just in time for me to blog, yay!) As soon as I got home from school this evening, I moseyed on over to fart dot com. I do not endorse this site, but in case you're interested (and I know some of you are), here at the derrieres that enthralled my six year old son so much:


My son, the "Typical Male". He has his father's taste.

Me & JD....

Many of you already know that JD and I were "high school sweethearts". If you know this, then you should also know that we have always been complete opposites of one another. Always. I'm cheerful, goofy ("birds & flowers" as he likes to call it) and he's....well, kind of mean looking.

When JD was much younger, people weren't very fond of him because of of his "look". As a matter of fact when I first met him, I thought he looked like a total asshole. Definitely not my type of guy. As far as I was concerned, there was nothing appealing about a person who looked at me like this:

Of course, I felt this way about him before I knew who he was. The picture above (where he's taking a drag from a cigarette) was taken just seconds before he cracked a huge smile. I caught him on candid camera and he felt silly. And the "scary eye" picture? Well, I just called his name and he looked at me. He always looks like this.

Things aren't always as they appear.

Regardless of the many bumps we've encountered on our journey together, I am often thankful that I didn't let my eyes decieve me. We celebrated our 11 year anniversary just earlier this month. In these past 11 years, we've shared so many depths of joy and pain together. Oh, what a ride it has been!

I'll love him and the life we're created together until the end of time.

Blood Stuff...

Earlier this week, Niki's nurse case manager called me to report the results of Monday's lab draw. He was happy to report that Niki's INR was 2.5! (They want her number to be between 1-3 so this is good news my friends!) Which of course means that her new factor dose @ 160mcg is doing it's job. I am even happier to report that Niki has had no signs of any new GI bleeds since her dose was increased. She also has an appointment with the GI specialist next week for further work up. I'll keep you posted, of course.

But man, Dr. Awesome is doing a fabulous job with my rare little girl, isn't she?! :)

Speaking of rare...I was working with a pretty, young patient yesterday who so happened to have moderate Hemophilia B! You've heard me say this a thousand times, but hemophilia is RARE, and it's even RARER to have it as a woman. Of course, I turned into a total "groupie" and blurted out that Niki had FVII Deficiency. Naturally, we talked about how rare it is to find other WWBDs. (I've said "rare" a billion times, I know. But, it's true!) Anyway, at the end of our conversation I had to resist the urge to ask her about her period. She was only 23yrs old so I was DYING to know what options her doctors gave her. I maintained my professionalism though and bit my tongue instead.

Despite the fact that I'll be armed with information about sex and managing FVII Deficiency, I'm still nervous about her damn period.

Aunt Flow is already a pain so I can only that hope it's not going to super suck for my baby girl. Even though Niki's period is lightyears away, I still want to be prepared. (Yes, I know, I'm totally type-A.) But....as far as I'm concerned, I'm preparing for a double-whammy when that time finally comes. We're going to have "the talk" and I have to explain to her why she's going to bleed more than her other peers. Most of you already know that I have no problem talking about sex. This obviously means that Niki will be no stranger to age-appropriate sex-stuff and living with a bleeding disorder. But shoot, I'm still a mom and I'm dreading when the day comes!

Maybe things will be different 15 years from now so only time will tell.

I've read that young WWBDs often start taking birth control pills to lighten their periods. I've also heard that periods are tough to deal with. The two women that I met with FVII Deficiency also never had children. I hope the case will be different for Niki. Being the typical father that he is, John thinks that Niki will NEVER date or have sex. Can someone say denial? Nevertheless, it is my hope that my daughter will be "just like everyone else". Sex and all.

Who doesn't want that for their kid?

Boo & The Metal Ball of Doom...

I've been on a "blog hiatus" thanks to livin' "la vida loca". In lieu of studying, I decided to procrastinate by partaking in my virtual therapy instead. So, here I am.

In case you didn't notice, my last couple of entries have been a little dreary. Please accept my apology for sweeping you deep into the ebbs and flows of my emotional tide. If you're reading this, you probably know me "IRL" anyway which means you're clearly aware of the fact that I'm still learning how to cope. In the past 16 months, I've come to realize that grief tends to affect me in "contractions". I'll start feel the pain rise inside of me and just when I don't think I can handle it anymore, the pain slowly subsides. (If you've given birth before, you should know exactly what I'm talking about.)

Deep breath in....and blow it out.

Even though I'll be "in labor" for the remaining years of my life, I am happy to report that I'm feeling a little better these days. :) Although, it could be because I've been so distracted with school. Whatever the case may be, I'm inbetween "contractions" right now so I think an update is in order.

Monday was Boo's 4th birthday and for his pre-birthday gift, he recieved a trip to the ER!

I was studying on Sunday evening when I heard Kevin's lilting-voice yell "Moooommeeeeee" from the boys' bedroom. I was already mildly exasperated since that was about the billionth "Mommy" I heard all day. I simply responded with "Yes, Kevin?" and continued on with my reading. And then I heard...

"Anthony has a metal ball stuck in his nose."

Oh the joy! Obviously, I was in the kids' room in heartbeat. There was my poor Anthony sitting on the floor with tears streaming down his face. He wasn't bawling, but he had a terribly forlorn look on his face. I swear, if he had a tail, it would have been between his legs! What a sorry sight he was. Poor Boo-Boo was gingerly touching the side of his nostril and judging by the look on his face, I could tell that he was in distress.

You see, Anthony has a thing about his nose.

Boo does not like people to touch his nose AT ALL so I was surprised when, lo and behold, there was a metal ball lodged inside of his "schnozzle". The poor kid probably meant to keep the damn thing within the cusp of his nostril, but being that he's barely four, he also didn't understand the physics involved in removing it.

Newton's 1st Law: A body at rest, stays at rest until force acts upon it.

Now why he put it up there? I have no idea. Why do kids do half of everything they do? But....I'm sure the ball was just barely dangling out of his nose until he pushed it up in attempt to get it out. He should have applied force downward, from the outside of the nostril, but he's a kid. Most kids like to learn lessons the hard way. I surmise that the more Boo tried to get it out, the further upward it went . By the time Kev alerted me of his brother's predicament, it was too late. There was nothing I could do to get it out! For the record, I'm almost positive that Kevie was in absolute awe watching his little brother repeatedly jam his finger up his nose in a panic. I could hear the amusement in Kev's voice when he screamed my name. Yeah, Kev was definitely not letting Boo live this one down.

Not to mention the fact that Kevin incessantly put about a thousand "2-cents" in as I examined Boo's nose.

After reminding Kevin that it would be a good time to "be nice" to his brother, my initial reaction was to panic. Oh, but that's not how things work out in our household. I knew that if I started to panic, Boo would surely follow. I learned early on that the boys are very much in tune with their mother's emotions. Damn! So, I calmly told Anthony that everything would be fine as I placed a call to John. John came home immediately and we off we went. We tried our best to turn it into a game so Boo wouldn't be afraid. We were naturally worried, but it was just a little bit funny after the initial shock subsided. Kids say the darndest things! When we asked why he did it, Boo replied that Kevie told him to. Lies. John and I tried VERY hard not to laugh during our drive to the ER.

Well, long story short, we waited 2.5 hours for a 15 second procedure!

Boo "took it like a man" and didn't even cry. :) With that being said, I made the rest of the story into a "photo essay" mainly because I'm too lazy to type. Enjoy!

The Forlorn Look: On the way to the ER with his healthplan card & "E-pin Lion Lion" in tow.

Boo at the ER: Please excuse the horrendous outfit we hurriedly threw together!

The Metal Ball of Doom: He let me take this picture so he could see what it looked like. E-pin Lion Lion: Boo took a picture of his buddy while we waited for the doctor.
Boo and E-pin Lion Lion: Still waiting...
Me & Boo: STILL waiting. (Please excuse my frumpy self.)Redemption at Last: Just moments before The Metal Ball of Doom shot out of his nose and ricocheted off of my shoe. Boo, After: He took this pic of himself to "make sure" the ball was out. The Metal Ball of Doom in all its Glory: Can you believe that this big ass thing was in my kid's nose!?

The end.

P.S. For those of you that may be wondering...Yes, I plan on keeping the ball. I'll show the ball and "Rainboots of Shame" to his future wife. More on the "Rainboots of Shame" some other time. :)

Perception...

I try to see through rose-colored glasses when I look back on the last days of Ethan's life.

Losing him was horrifying, but if I focus on how horrible his death was for us, for him, I'd go crazy. I dwell on what I feel, but never on why it happened. With time, I've trained myself to relish in every aspect of his short life, even the really awful ones. I am just now learning how to talk about it.

There is good in every bad if you look hard enough.

Ethan's prognosis was poor, but his life was so rich with love. People crowded the hospital halls and waiting rooms just to be there for him, for us! Each and every person had a part in lifting up our spirits. I'll never forget each day that we shared together. My precious boy had tubes connected everywhere, but he still looked so angelic despite the medical madness surrounding him. A stranger might look at this picture and see a sick child, but I see a beautiful boy surrounded by heavenly blue light.

This is one of my favorite pictures that we took of Ethan in the NICU. And this "rose-colored" moment is an equally important part of his life and his death. Even though this picture sometimes envokes the sadness within me, I am so glad that I have it in my possession. And to be honest, it wouldn't have happened without a little help. Unbeknownst to him, John's cousin, who also suffered a traumatic loss, gently gave us two very important reminders:

Cherish this moment and don't forget about God.

He purchased a disposable camera and gave it to John. "Take pictures.", he said. At the time, it didn't really dawn on us to document such sad events, but I'm so glad we did. We eventually ended up bringing our digital camera to the hospital, but we would have never thought to do so if his cousin hadn't thought of it. This cousin also pressed a rosary in my hand. The same rosary that helped me (and continues to help me) maintain my faith in God's plan. Such simple reminders of two very important concepts.



Not once did I ever feel anger toward God for bringing Ethan back to Him. I honestly believe that the rosary had something to do with it. And now, over one year later, I also have the ability to look back on Ethan's NICU pictures and countless others, thanks to the reminder John's dear cousin gave us. I am so thankful for that wonderful gift.

Now, I can use my rose-colored glasses as I see fit.

That day and everyday after...

"There's a lot of blood."

We heard that phrase too often. I doggedly tried to ignore it, I tried to be positive, but my entire being felt it. I knew that Ethan wasn’t going to make it before the medical profession told me so.

A mother knows these things.

Ethan’s vitals were stable and he was still medically alive, but I felt him with me so I knew he was gone. God gave me strength, but Ethan stayed by my side to fill the hopelessness growing in my heart. The MRI results came back early and they were not good.

John and I were both in disbelief when the Neurologist told us about Ethan’s prognosis. Her eyes were watery when she talked to us. She looked like she was ready to cry. I admired her genuine compassion despite the fact that she probably gave parents bad news everyday.

I remember that moment like it was yesterday.

The feeling of the cool, hard rosary beads I gripped in my hand….the stream of tears stinging my eyes….the awful sounds John made when he sobbed in spite of himself…that room. In a cruel twist of fate, we ended up staying in that same room when Niki was born. Go figure.

Those walls know our cries well.

We called everyone back into the room after we regained our composure. Oddly enough, John and I took turns breaking down. We were strong for each other when the other one was weak. We collapsed into one another once our greatest fear was confirmed, but we still had to be strong. I don’t know how I ended up being the spokesperson between the two of us, but I did. I felt my heart ripping apart inside, but I somehow managed to get the words out. I'll never forget the collective gasp of disbelief I heard after I said...

"Ethan’s not going to make it."

I couldn’t bear to hear everyone cry so I stopped them. If everyone else cried, I wasn’t going to have the composure to say what I had to say. The news didn’t take me by surprise – I expected it – but it still hurt. And it hurt me badly. I had to force myself to be strong when I really wasn’t. This is what I do.

I force myself to be strong every day despite the hurdles thrown my way.


Ethan in the NICU.


Annika in the NICU.

After...

I still find it so very difficult to describe what it feels like to have lost a child. However, based on my personal experience, I've learned that emotional pain tends to manifest itself physically. The ache of losing Ethan has continued to echo within me in the seconds, minutes, hours, days, weeks, months, year, following his death.

I'll never be rid of this emptiness.

I've yearned so deeply for the heaviness of his weight resting in my arms. It seems like such a simple thing to miss, but his presence was something I took for granted when he was here on Earth. His soft skin and sweet breath were things I thought would dissipate instead of being taken away. I foolishly thought that I would be able to feel him for the rest of my life.

These days, all I feel is dewy grass and the cool granite of his headstone.


When the doctors and nurses confirmed that Ethan was gone, our friends and family were called back into the room. That was the last time I held him in my arms. I had him swaddled tightly in his blanket in my feeble attempt to keep him warm. He looked so beautiful, so peaceful - almost like he was sleeping. I vividly remember intuitively rocking him back and forth as I watched people slowly file back into the room. I also remember feeling embarrassment sweep over me when I finally realized that I was doing this. He obviously didn't need my soft swaying to soothe him to sleep, but it is what came naturally to me.

I wanted to comfort my baby in life and in death.

There has been many a time at the cemetery when I've wondered if he was "alright" down there. It's a silly notion, but it's true. In fact, I made sure that he was "taken care of" when we buried him. He had the best casket with the thickest lining and tightest seal. I purchased the softest cap & blanket and washed it in baby detergent along with all of his other burial clothes. I even gave the funeral home a diaper.

This may all sound absurd, but this was my final way of being his "mother".

School...

I've been studying like crazy and just needed to take a short break. School has always been easy for me, but I don't know why I'm having such a difficult time grasping the concepts the in front of me. I understand the subject matter, but it just doesn't stick in my brain. I have to read and re-read paragraphs to help the data adhere. I've been extremely frustrated with myself.

I suppose I have a lot more on my plate these days.

It could be why I'm having such a hard time. I'm thinking about a thousand other things and I'm a bit overwhelmed. I have three small children to care for, one with special needs. I'm also still tending to the wounds left by Ethan's death. It has only been the second week of the program and I'm already starting to feel my relationships suffer. School has taken over my life. It is so hard to nurture all the various seedlings one would find in a relationship. If I don't place enough care into these delicate plants, they'll wither and die away.

I definitely don't want that.

Note to self: Must find happy medium between the two to regain control in my life.

Niki the LadyBug

I am happy to report that Niki is a whopping 17 lbs! She's such a chunkster.

Aside from that wonderful news, Niki saw her Hematologist yesterday and thankfully did NOT get referred for an endoscopy...yet. Niki's lovely Hematologist sent a referral for her to see a GI doctor. (Side note: In an effort to maintain the MD's privacy, from now on I'll refer to Niki's Hematologist as "Dr. Awesome". Why "Awesome"? Well, because she is!) Anyhoo, we're going to consult with the GI doc to figure out what Niki's treatment plan will be. Maybe Niki won't need a scope after all and that's just fine by me. YAY!

Dr. Awesome decided that it was also time to increase Niki's NovoSeven dose on the account that her weight changed so drastically in the last month. Who knows, maybe the increase will help prevent her GI bleeding! Effective today, Niki is back on factor every other day. YES! The pharmacy will be genuinely thrilled. John gave Niki's first dose of 160mcg today and we're skipping her dose tomorrow. Things are looking better already. That's a-okay with me...and Niki of course. :)

In other news....I don't believe I've ever mentioned that Niki is a LadyBug.

The original readers that followed me to this blog may remember that I wrote this post about ladybugs shortly after Ethan's passing. Who would have guessed that ladybugs would hold a whole new meaning for me less than one year later. Niki has a link to ladybugs just like Ethan did. BTW - I still see real ladybugs from time to time. :)

Aside from Ethan and Niki, we've only "met" two people (both women) with FVII Deficiency. One of these women wrote the LadyBug link I posted above and she is also the Chairperson of the organization. (I've talked to her through e-mail and she is wonderful!) Anyway, I learned of her (and exsitence of LadyBugs) from a NovoSeven rep I met at HFNC's "Family Information Day" back in March. The drug rep takes care of the westcoast and he told me that Niki is youngest person using the drug specifically for FVII Deficiency.

My special little LadyBug. :)

FVII Deficiency is rare, so the NovoSeven rep only knew of 3 people living on the westcoast (including Niki) with this disorder. It is my understanding that NovoSeven was created to help people with Hemophilia A or B who developed inhibitors to their factor. NovoSeven is the only drug that is FDA approved to be used for Factor VII Deficiency. We learned at Family Information Day that a few other companies are in the process of creating recombinant FVII as well. But shoot...that's still years in the making! I've also read some pretty exciting news about another factor manufacturer that is working with a biotech company right here in South San Francisco! I saw a press release dated for 6/30/09! I LOVE NovoSeven, but I fear the idea that it is the ONLY drug available for Niki's condition. What happens if some catastrophe causes NovoSeven to be in short supply or unavailable through my health insurance? I doubt it, but still. It's nice to know other products will be available in the future. Gosh, we are so fortunate to live in this day and age! Medical technology is definitely on Niki's side.

But I digress...back to the LadyBugs!

This wonderful organization in Washington supports women with bleeding disorders (WWBDs) like Niki. Bleeding disorders are already rare, but it is even rarer to be a WWBD. Hemophilia (deficiencies in FVIII and FIX) is linked to the X chromosome making it more common to be a male with a bleeding disorder. Women typically don't get diagnosed until it is too late. So, we feel so fortunate to have met two "WWBDs" with FVII Deficiency!

When I look back at the "ladybug connection", I can't help but think that someone above was trying to tell me something. Was it God? Was it Ethan? Was it both? Maybe. Perhaps the ladybugs I saw everywhere were my son's way of communicating with me. Niki probably wouldn't be here if it weren't for Ethan. She came from his death and lived because of his diagnosis. Ethan the Angel. :)

I hope she loves and cherishes him as much as we do.

GI Bleeding...

Niki had two GI (gastrointestinal) bleeds right before the 4th of July. She had one on 6/30 and another on 7/2.

Ummm yeah.....tons-o-fun, right?

Anyway, because both bleeds happened to occur on a "no factor day", her doctor switched her back to having factor every day. Her first GI bleed was also on a "no factor day" so I'm pretty dang sure the "no factor" part has something to do with it. Gotta love them spontaneous bleeds, right?! I feel relieved now that I know she's covered, but I'm sure the pharmacy is absolutely thrilled. This girl will probably use close to $1M worth of factor by the time she's a year old.

But shoot, she spit up a friggin clot during her last GI bleed. As far as I'm concerned she's worth waaay more than a measly $1M!

JD and I were both at work when it happened. I work less than 10 minutes away from where Niki is, but John couldn't get touch with me right away. My cellphone was in my desk drawer so he raced home from SF to give her Novo. My mother-in-law (MIL) watches her, but she's just not comfortable with administering her factor. Yet...

I felt better knowing that she was laughing and playing while all of this was happening, but still... bleeds are no fun. When I finally saw her and the aftermath of the bleed, I felt like the worst mother in the universe. I should have had my cellphone in my pocket!!!I did NOT like what I saw on her clothing so I took some pictures to show her doctor.

Maybe I'm just biased, but I thought it was pretty bad, no?

***DISCLAIMER:

DO NOT SCROLL DOWN IF YOU DON'T LIKE THE SIGHT OF BLOOD!!!!!***

Gory, isn't it? Told ya not to scroll down. She's tiny so keep in mind how much blood this is coming from a 4.5 month old! (In case you're wondering, the key is there so her hematologist can have a rough idea of how much blood Niki's bleed produced.)

So anyway, Niki's monthly check up was bumped up to tomorrow. The nurse case manager told me that they *might* to refer her to the GI Department. The Zantac her hematologist prescribed after her 2nd bleed unfortunately didn't work to prevent 7/2's episode. (See above pics in case you forgot!) So, my little Niki *might* have to have an endoscopy to figure out what is going on. The fact that the blood was a combination of clotty and runny and not "just runny" could be indicative of a deeper mucosal bleeding. The runny bleed on 6/30 made the milk in her bottle turn pink!

I guess we'll see what tomorrow brings. I am happy to report that she's been bleed free since she's had her factor dose on a daily basis.

Also on another, more happier note, Niki has passed two milestones!! She's now eating solids consistently and turned over for the first time on Friday! Here's some pics....enjoy!

Niki <3's Rice Cereal!


Taken after she turned from her back to her stomach.

Bandaid...

The day we brought Ethan home from the hospital (2/21/08) I noticed that his heel stick site was still bloody. He was pricked twice in the same foot so the wounds were very close together. I thought the bleeding was odd, but I didn't want to overreact either. As I pulled off the old bandaid and put on a new one, I casually mentioned to John that the bright-red bandaid might indicate that...

"Ethan could have hemophilia or something."

I quoted EXACTLY what I said that day and those words will haunt me for the rest of my life. Less than 24 hours later, I desperately wished that I heeded my intuition. I had a premonition, but I completely ignored it. I learned later that John had no idea what hemophilia was when I mentioned it to him that day. Upon learning of Ethan's diagnosis, I immediately thought of the casual conversation I had with John the day before. Oh how I'll never forget that horrible moment in the NICU! I felt awful when I learned of his diagnosis.

"Hemophilia" echoed in my head.

I mentioned the bandaid (the faintly-bloodied bandaid that you can see in the picture above) at Ethan's well-baby check and thought nothing of it afterward. (His appointment was the day before he had the bleed.) I remember rushing home from his appointment that day because John's cousin was waiting at our house to meet Ethan. I was so excited to spend the rest of my life with my boy. Oh, it was such a beautiful, sunny day! Never in a million years would I have guessed that damn bandaid spoke mountains of information.

My euphoria was shattered the very next day.

Now that I look back on everything, I honestly feel like I should have pushed more at his appointment. I don't blame the doctor because the bleeding heel stick was such an insignificant thing compared to the chordee. We focused more on his chordee during his appointment. But geez, it's been over a year and I'm still kicking myself in the head. The older boys had heel sticks before and they didn't bleed like Ethan did. They also didn't develop petechiae on their noses from crying. Nevertheless, I surmise that the doctor didn't order coagulation labs for the same reason I didn't push the issue.

A bloody bandaid and two tiny dots on a cute little nose are insignificant things for people with no prior history of bleeding disorders.


Would you have noticed anything other than a cute face if you saw this?

But still...now that everything has been said and done, I can't help but feel like Ethan would still be alive if I just pursued my inution. Ethan's doctor (now Niki's hematologist) was so gentle when she spoke with us about his bleeding disorder. I remember that conversation well. I cursed myself and that blasted conversation! Over a year later and I'm still disturbed by my unforeseen revelation.

I wonder what would have happened if only I paid attention to the sign?

Maybe a diagnosis and intervention could have been made before the head bleed, ya know? If only I wasn't so f*cking oblivious to the sign in front of me! I kept that bandaid as a reminder to myself to NEVER ignore my instincts. By the time the significance of that tiny bandaid came to light, it was too late. Ethan's bleed happened too fast, too unexpected. His hematologist told us that his bleed was spontaneous and occured all at once. The damage was done in a matter of seconds, but the bleeding in my heart will last forever. There was nothing anyone could do to stop his fate.

I blame me.

Even though I know his passing couldn't have been avoided, I suffer from mother's guilt by default. I know I shouldn't be so hard on myself and I realize that it's not my fault that Ethan passed away. This was God's plan after all. There's no way that I could have possibly known or stopped it from happening the way it did. We already had two healthy children and NO family history of Factor VII Deficiency in either of our families. Even though I knew what hemophilia was, I still had no clue about the pathophysiology of hemophilia. I knew nothing about the risk of spontaneous bleeding in the central nervous system. The sign was there, but I simply wasn't meant to read it.

I've never looked at a bandaid the same way again.

Regret

Ethan had a very mild case of chordee, which is a fancy way of saying that his penis was a little crooked. The day he was born, the doctors told me that Ethan would need a special circumcision that only a Pediatric Urologist could perform. It was supposed to ensure that his penis grew out in the proper direction. I was obviously concerned, but the doctors assured me that chordee was a fairly common occurrence. Kev and Boo (neither had chordee) were both circumcised before the left the hospital, but Ethan had to wait.

Then, he died.

After he was gone, I slowly started to process what happened and began to "connect the dots" leading to his death. I realized that if Ethan didn't have chordee then he would have been circumcised at the hospital like Kev & Boo. If Ethan was circumcised before he left the hospital, then we would have known that he had a bleeding disorder. (Most boys without prior family history of  hemophilia are diagnosed once the circumcision site bleeds profusely.) Once the dots were connected, I realized that there was a possibility that Ethan could have been diagnosed before he had his head bleed. Maybe he would still be alive today if only he was circumcised.

Funny how things work sometimes, huh?

Aside from FVII Deficiency, I also started doing research on hypospadias/chordee after Ethan's death. I drowned myself in knowledge in a feeble attempt to regain power in my life. I obtained a lot of information, but one point stuck out in particular. Unless chordee/hypospadias is hereditary (which trust me, it's NOT!!!),I read that hypospadias/chordee can also be connected to artificial hormone intake (similar to what is found in birth control pills)in early pregnancy.

And...I got pregnant on the pill.

I was switching pill brands when I became pregnant with Ethan. I didn't even know I was pregnant until John told me to take the test! I "missed" my period during the placebo week and that's when I knew for sure. Obviously, this means I was taking birth control pills during the first couple of weeks of my pregnancy. So I suspect that Ethan's mild hypospadia might have had something to do with the pill.

Now, I regret taking the pill.

I tried the pill in high school, but it made me sick. John and I have stuck with NFP (natural family planning), and barrier methods to prevent pregnancy. Believe it or not, Kev and Boo were planned pregnancies. Aside from my very first pregnancy during my senior year of high school (I miscarried at almost 12 weeks), Ethan was my first surprise "adult" pregnancy! I was trying to prevent pregnancy when God decided to bless me with Ethan's arrival. Then God took Ethan back to heaven with Him.

Ironic, isn't it?

Many of you may know that the Catholic church is staunchly against birth control, and well...sex outside of marriage in general. (Click here and search the article for "implantation" if you want to learn more about the topic.) If your lazy like I am, in summary, the Catholic Church does not condone the use of birth control pills because it prevents implantation. There are some pills that prevent ovulation altogether and the Church is against those too. For the pills that prevent implantation, this means that the hormones alter the uterine lining thus making it difficult for the embryo to implant. It does not prevent fertilization altogether.  Which essentially means that if you believe that life begins at conception/fertilization, the pill is a big no-no. Technically, the pill induces early abortion because the fertilized embryo cannot implant and "live".(Click here if you want a few quotes on the subject.)

So what does this have to do with me?

Well, for starters I'm Catholic. Even though I "live in sin", I still try my best to abide by the rules. ;-) Had I known this tiny bit of information, I probably would have stuck with NFP. While I believe and support the fact that people are free to make their own informed decisions, I make my decisions based on my personal experiences and what I believe holds true. I do not pass judgment on others so I ask for the same courtesy. Having already lost children to miscarriage and traumatic illness, I personally could NEVER do anything to endanger my child no matter what stage of development he/she is in. Whether it be in utero or years after birth, I simply could not do it. My heart is to weak and I've felt this way even before I even read the Catholic viewpoint on birth control pills and the latter.

So do I believe that God punished me for being on the pill?

Absolutely not. I simply believe that science and faith found yet another way to intermingle into a huge confusing mess. Unfortunately in Ethan's case, it was too late to do anything about it. I was on the pill, Ethan was born despite my preventative measures, and his diagnosis was *possibly* delayed from the effect the artificial hormones had on his body. The way I connected the dots could be totally different from the way you would. We are each entitled to our own opinion.

Either way, I live in regret.

P.S. I learned an interesting thing about baby #1 (who would have been eight this past January) shortly after we learned of Niki's diagnosis. A Hematologist from Stanford, who knew of Ethan and Niki's case, told me that extremely severe Factor VII Deficiency is not typically compatible with life. That's why my cubs are so rare. The doctor from Stanford hypothesized that could be why I lost the first baby. He or she could have been severely deficient. Closure at last.