Living without Alex 6-29-07

FRIDAY, JUNE 29, 2007 12:27 AM, CDT

This post was moved from Alex's original blog


It's been such a long time since I've been here. I stopped by to check the guestbook entries and saw Trista's entry and cried. Some days I yearn for that moment of healing........ that moment that the hole in my own heart closes just a little and then I realize that it closes a little every day. I don't have a "superman" scar that people can see, but some days the scars are covering my entire being.

I always knew that our experience was for a reason, I think that I thought that one day someone would just knock on my door and tell me what I was suppose to do with it. God and I have many conversations about that. I have trouble reading between the lines and seeing the rainbow for the clouds sometimes.

Every day that I have lived since the day Alexander was born has been a new day to do something with my life. In the past year and a half I have had to rebuild myself and I still sometimes wonder if I ever will be a complete person again. I have gained confidence, I have gained tremendous knowledge and compassion, yet I have lost such a part of me that I can't get back. I am just now realizing that maybe I don't need it back. Maybe Alex's illness and death was my rebirth. Maybe I got the opportunity to start new in life, that's a very liberating idea.

I'm different now. At first I resented the stares, the saddened looks as people glanced my way. Now in a way I cherish that. When Alex died all expectations that I put on myself of what I thought I needed to be melted away and I was given a chance to become anything I wanted to be.

I think I have come a long way in that venture. I think I'm a good person now. I didn't always feel that way. I can look at myself in the mirror and although I've aged physically this past year, I like what I see. I see a woman who has finally become something. I have finally gotten my career where I want it to be, I have finally become the mother I wanted to be.

I don't think I've dealt with it all in ways that were expected. I think you have a choice, you can lay down and die or you can realize that quite honestly the death of your child is the worst that life can do to you..... I've survived it and that means I have the strength to do anything. I refuse to lay down and let my spirit die.......

Oficially employed

The meeting at work went great. We got everythign in place for the Doula program as well as discussed some changes that are going to be made on the unit to make it more "baby friendly". Such as the parents bathing the baby in the room and skin to skin contact with the parents before any routine baby procedures are done and doing as much as possible with the baby on moms lap. For c-sections the dad will take the baby for some skin to skin contact while mom is in recovery. It's amazing progress!

This is totally what I've been training for my whole life and I'm really excited to be part of the change for women in this area! Hopefully we can get these services included in more and more hospitals so having a doula becomes a standard way of giving birth!

Sorry I've been a big slackish

I've been so busy and doing nothing at the same time. I don't have anything exciting to blog about. Let's see. This past weekend we had my moms boyfriends 50th birthday party, and I forgot my camera.... that sucks!

Tomorrow is my meeting at work. I'm really anxious to finally get going full throttle. FINALLY. This has been months in the making (years actually) and it's time to hit the ground runnin!

We added Austin and Hailey to our cell phone plan and Hailey hasn't talked about anything but her cell phone in the past 24 hours. I'm ready to shove it up her nose quite honestly. Can't wait ti see our bill skyrocket.

See what I said about having nothing to blog about? So I'm being boring lol

In the news

15 year old preforms c-section:

A 15 year old son of a doctor in India preformed a c-section.... why? To get into the guiness book of world records. His father is facing losing his license.............. Ya think?!?!


And

Even more disturbing.

A 19 year old mother calls 911 after finding her baby dead.....

She had TAPED his pacifier in his mouth after she overheard someone talking about SIDS. Ya know that study that says that pacifier use may reduce risk of SIDS? (Co-sleeping and night nursing seems like a better way to me, but that's for another post I suppose). So yeah she TAPED the pacifier to the 4 month olds mouth and killed him! This was after she lost his swaddling blanket and tied his arms up with a sleeper. Isn't it amazing that you pretty much have to prove a Royal bloodline to adopt a child no one else wants, but any idiot can leave the hospital with a newborn without so much as an IQ test? Good LORD!

And yesterday president Bush vetoed yet another stem cell research bill. While I get his religious convictions on the subject and am a religious woman myself, what ever happened the the difference between the Church and state? Having had an ill child who may have been helped if stem cell research were further along it makes me sad that we can't find some compromise on this issue.

What are your thoughts on stem cell research? Would you donate embryos you weren't going to use to research? Drop me a comment and tell me your opinion!

Life is like a box of chocolates..

Oy, the past week or two has been a bit nuts. With the kids out of school now we are running to and from this summer school class and that, band lessons, friends over here, kids over there. It's crazy.

I'm still worried about Nathan's eye. You know, I wonder if they missed something. The doc was very thorough so that's reassuring but the mommy in me can't help but worry. It is starting to sink in the severity of having a cataract at his age. The first few months are HUGE in visual development and he's actually quite "old" for diagnosis and treatment. Which means that he could have vision issues that can never be overcome. I hope not. The blessing of it is that even if he does, he will have never known life to be any different so I'm sure will adapt quite well. Here's a little info about congenital Cataracts at Medline Plus . Kind of an odd thing though, since they dilated his eyes I'm noticing that his right pupil (where the cataract is) is consistantly smaller than the other. I dont' know if it's always been that way and I just didn't notice it or if this is a new development. It responds the same as the other to light and dark, but it's just smaller. I guess we will find out about that too when we go to Marshfield.

Hailey spent 3 days at the beach last week and has a good 2nd degree burn. She's got blisters that bleed. It's awful! She swore she wear sunblock but I doubt she applied it as often as she claims because I don't think I've ever seen a sunburn as bad as hers.

Craig has a meeting tonight at work. I don't think it's going to go well. We were hoping to keep him working for another month or so until I get my job established but I'm not sure that's going to happen. I know God will take care of us, he always has. But the prospect of Craig being unemployed is scary. There could very realistically be a few weeks where we don't have any income coming in. Yikes. We've been tossing around the idea that if that happens we could take out a 2nd mortgage on the house, we have $60,000 in equity in it and could use that as a nice cushion to have some security, it's a big step since interest rates are quite a bit higher than what ours currently is and we'd be doubling our payment most likely. Definitely not something we are jumping into without some serious consideration.

As far as my job I'm still waiting to hear when our meeting is to go over the ins and outs. That's life in a hospital, nothing is ever accomplished in a timely manner. That will probably be the hardest thing for me to deal with as I'm one that likes to hit the ground running. It's frustrating to say the least.

My cat had 5 kittens yesterday. Anyone want one? We need kittens like a hole in our head. But it's our own fault I suppose for procrastinating on getting her fixed.

I've gotten a few pics for the tub time contest now and will probably launch that on Monday. So you've still got time to send your pic.

We'll take it!

He doesn't have cancer!!!! He does, however, have a cataract. The ophthamologist who saw him today reffered him to a pediatric one about 2.5 hours from here for further treatment. We go there on July 2nd and will have more of an idea what we are up against then. Thanks for the prayers, a cataract can still be pretty devastating for him visually, but it's not threatening his life so we'll take what blessings we can get!

When we got in the car after the appointment I just busted out bawling. I totally felt like we had dodged a bullet and just kept saying sometimes prayers ARE answered.

God is certainly good!

A picture tells a thousand words

Sometimes those words are scary.

A few years ago I got an email about an eye cancer called Retinoblastoma. I honestly at first thought it was a hoax email but it wasn't. Who knew it would possibly save my childs life.

You know when you take a picture in low light and you get the "red-eye reflex"? Well that reflex is from the light of the flash bouncing off the rich blood vessels that supply the retina at the back of the eye. It's scary looking, but honestly is the sign of a healthy eye.

So imagine my shock when I got these photos yesterday of Nathan from a friend of mine:



I immediately called the ped's nurse and like most nurse's she was obvlivious when I mentioned that i'd heard this can signal cancer. She talked to the ped, and they wanted to see him.

She looked in his eye and said she was going to go see if the ophthamologist was still around. He wasn't but she skimmed through his books for a minute. She came back and said that the pictures she found what's in Nathan's eye doesn't look like a tumor, but maybe a freckle. However she couldn't be sure. If it was a tumor, it was small. She had her partner look who saw it and told me "i don't THINK it's bad". I wasn't reassured. They made an appt for us for monday with the ophthamologist and they will dilate his eyes (possibly have to put him under to do this) and take a good look.

Please pray that my little boy doesn't have cancer. I don't think I have the strength left.......

My dream job!

So. After a month of waiting to hear if the hospital board was going to approve it, I am now going to be contracted with the local hospital for doula services! This is an amazing breakthrough in getting Doula services recognized and accredited by the medical community and I can't wait to get started! Just waiting now on a meeting with the Director of maternity services and my back up to hash out all the little niggly details. How awesome is that!!!!

Couldn't come at a better time either. C's boss is going overboard in her quest to be a freaking dictator and cooks are quitting left and right. Soon C will be one of them! WOOHOOO

Michael Moore's "Sicko"

Obviousely I haven't seen the movie yet because it hasn't released yet. But I am very intrigued. Now, some of you may hate me because I actually have respect for Michael Moore. whether or not I agree with him 100% of the time (usually I do) I have respect for his determination to stand up for what he believes in at the expense of his reputation, freedom, and possibly life. There's something to be said for that.

If you are unaware, this movie coming out, entitled "Sicko" is about the state of healthcare in the United States. He says that healthcare should stop being a commercial endeavor and start just being a basic human right. I agree with that. He says that we need to take the profit out of pharmacuticals and medical care. I don't know if I agree with that. I think that even though healthcare should be a right, should be a given in this country, one of the superpowers of the world that there has to be some reward for hard work. I wish I could be confident that the drug and health researchers would do thier best solely for the satisfaction of saving human lives...... I can't. I think if we took the dollar out of thier pockets research would falter. If research falters cures and medications don't happen, if they don't happen we are worse off than when we started.

So, what could happen in this country to help fix our healthcare system? What can we do to shift the balance of power from insurance companies to ourselves and our doctors? Are you planning to see SICKO when it's released in June 29th?

Visit Micheal Moore's website and watch some of the clips, then come back and tell me what you think!
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Don't forget to vote for the cutest nursing photo 2 posts below!

I could really use some divine intervention

Things seem to be snowballing on me a little. Yesterday I had my follow up appt with the urologist on the results of my Ct scan.... first a little background.

After the birth of my angel baby in January 06 I got a UTI. I was stupid and put off treatment because I simply didn't have time to drive back home from where he was and see my doc (insurance didn't cover me there) so I didn't start getting treatment until after he died and I went finally back in for my post partum visit, which was the end of May.

I've been on antibiotics since. Everytime I finish a course it comes right back so I've spent a year on Macrobid waiting until I wasn't pregnant anymore to set up the CT scan (they can't do the dye part while you are pregnant).

So 2 weeks ago I saw the urologist and he ordered the Ct. He told me there probably wasn't anything they could do for me but he wanted to at least take a look but chances were I'd spend the rest of my life on antibiotics.

So had the CT catastrophe. Fast forward to yesterday. My follow up. He walks into the room and starts reading the reports on the CT. Says "oh this is unusual"... just what we like to hear right?

Turns out both kidneys are chock full of kidney stones. Almost all of them are tiny, 1 mm with a 4mm one spotted. Apparently because of my age and the fact that the stones are small, this is unusual. Most people will get a stone here and there in one kidney or the other. The fact that there are SO MANY and they are all small means that for some reason, I just started making them in overtime recently. He says I probably pee out tiny stones every day and don't even notice (WHAT?!?!)

I asked if he could do surgery and he said it was pointless until we figure out why I'm making the stones. There are a few possibilities. #1 I have a problem with my thyroid, which can be normalized with medication. #2 I am taking in too much calcium (highly unlikely for me, i'm lactose intolerant and don't get much calcium). Or, #3 My kidneys are failing and can no longer take care of everything they need to.

So he ordered blood tests (5 freaking vials worth) and a 24 hour urine collection (joy) and it will take a month to get some of these tests back, then I see him again. If they find the problem then we fix it, get me to stop making stones and he can try to blast the 4mm stone (which only has a 50% chance of passing at that size)if he can find it. This can only be done if my kidneys are functioning at 100% as the laser damages kidney tissue. If they can't see the stone clearly, they will go in and cut my kidneys open and remove all the stones that way.

To top it off the antibiotic isn't really keeping the UTI's at bay anymore, just barely taking some of the bacteria out.

If they find that it's my kidneys I'm looking at transplant. I've been informed to "not think too much on that right now" (yeah right)but to ask family and friends if they would be willing to be match tested, it's just a blood test.

The scary thing? This is the same thing that killed my grandmother. She had 2 kidney transplants and then developed brain cancer from the drugs used to prevent rejection.

On top of it, Craig's day cook quit today so he'll be working 8am-midnight until God knows when now.

I need to hear if I got this new job, we need to get him out of that hellhole.

Don't forget to vote for your favorite photo below!!

Infant product reviews

Unfortunately I don't have a gazillion dollars like Oprah, so I can't give each of you one of the things I'm about to review, but you know I would if I could!

First up! The Combi Connection carseat


I paid $140 for this carseat based on it's safety features. The "eggshock" foam in the headrest in particular. They say you can drop an egg from 1 meter on it and the egg won't crack. I have to tell you I neglected to try this particular test because if the egg did crack...... well would you feel comfortable using a carseat you had just destroyed the box for because everytime you put your baby in it you envision an egg cracking open? Not only that, but what a mess that would be! I also really like the breathable fabric, it is designed to keep baby cool in the summer and warm in the winter. It is very light (7 lbs i think?) and has one of the higher weight limits of carrier type carseats (22 lbs).

What I don't like- It doesn't hook on a shopping cart. FORCING (yes FORCING) me to then pay $100 for the matching stroller ( combi city Savvy). Ok so I wanted the stroller anyway but that's beside the point.

Evenflo Elan bottles

Although i am a breastfeeding momma I do pump the occasional bottle for daddy to feed. Can't hog the baby all the time you know. The Evenflo Elan bottles can be purchased at Target for $12.00 for 3 bottles. A bit pricey as far as bottles go, but the nipple is shaped just like the breast, complete with the little bumpy mongomeries glands! The bottom has air vents like the vent aire bottles that allow air to circulate through the bottle and not create the suction. Breastfed babies suck HARD and it's impossible to keep bottle nipples from collapsing, problem solved with this bottle!

The Bumbo seat and play tray


If I'm being completely honest I have to say this wouldn't really make it to my "favorites" list. I included it here simply because it's so popular right now. My son (now 4 months) really doesn't care for this seat. In order to serve it's purpose, which is to help babies who can't yet sit, sit. It is very restrictive, my baby HATES that. I purchased the tray along with the seat and am less than impressed. The tray gets bumped off very easily and takes 4 hands to put on. Not the best $45 I ever spent. If you are going to get one of these type seats though, please do get the Bumbo brand and not the Bebe Pod brand, the bumbo is made from soft foamy rubber and is much more chubby leg friendly. And no, he doesn't have the purple one that's just me being lazy and saving the first pic I found.

That's all for now!

Why would you want a large family?

I had a strange moment yesterday. When out in public with the children I have gotten many comments, good and bad (mostly good thank goodness). Yesterday I got the question there is no solid answer for, WHY?

I replied that we love it and continued on my way. On the way home however I really went into deep thought about this. Why DO we have a lot of children? What are the reasons? I searched my soul and what I came up with was simple. We are not in control all the time. Some things ARE better left for God to decide. I can decide what color car to buy, but making decisions that affect lives? Decisions that possibly deny a person coming into this world? That is WAY beyond what I'm qualified to do.

So we have so many children because God either feels we are deserving of all these blessings, or that we have something to teach, or that we have something to learn that most people learn with 1 or 2 and we just can't push the rocks in our heads aside to listen.... Either way, I'm grateful.

I'm not one of those people who started off thinking I'd have a large family. I've just never had the "done" feeling that other people get. So, as long as my health holds out we will continue to let God decide what is right for our family. With every child we have grown, grown as people, our finances have grown, our living space has grown. God has provided for each of our children and I have no reason to think he will stop as long as we trust in his divine judgement.

What are your thoughts on why some people are happy with 1 or 2 children and some never quite feel content? Please don't hesistate to comment just because you feel your comment might be controversial. I'm interested!

The post about my son is still in the works, I would however like to invite you to check out his caringbridge site. It is a journal that was kept during his life and struggles and during ours, living without him.

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Every mothers nightmare

Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.

Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.

It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.


He was born January 28th 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...

That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.

We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.


Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.

Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.

The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.

The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.


So, from that day, March 16, 2006 forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime.


Again I invite you to read his caringbridge journal. Few things are more precious to me than that journal. When I need to go back in time all I have to do is read and I am back there, kissing his little head and stroking his taped cheek. Some days the memories are so cloudy that the words in that journal are all I have left of him. That and the basket that sits on my headboard full of his toys.

Soon it will be time to keep the kids busy all summer

Any parent with school age children knows that the end of the school year can be almost as chaotic as the beginning of a new one. What with field trips, show and tells, picnics and planning summer activities. Oy, I get tired.

I'm very proud to say that Hailey made "anchor" position on the relay team for the track and field event on Monday! I'm so proud of her! She can run like the wind so I hope it's something she pursues next year as she goes into middle school. Speaking of....... MIDDLE SCHOOL! Who told her she could grow up? Soon, I will have 2 teenagers......... pray for me!

Here's a pic of Hailey and her best friend from this year (anyone with pre-teen girls knows she'll have a new best friend next year) Hailey is the brunette. This was taken after her band concert. *PIC HAS BEEN REMOVED DUE TO SOME SUSPICIOUS EMAILING OF THIS BLOG POST URL*



I know I'm just slightly biased, but isn't she a beautiful young lady? I'm gonna need a big stick for the boys......

Moving on.... I wanted to do something cute with Jack's hair for the summer. It took a lot of convincing my husband, but I got my way and this is the end result....*PIC HAS BEEN REMOVED DUE TO SOME SUSPICIOUS EMAILING OF THIS POST URL*


And a photo of my sweet baby boy, he looks a bit frightened in this picture, poor baby! He's gotta hate that camera since I'm snapping at least 5 pictures of him a day. Poor kid's gonna be blinded from the flash. *PIC HAS BEEN REMOVED*


And finally I have a photo of myself with Nathan, yes I hide from the camera I'm probably the LEAST photogenic person on the planet!
*PIC HAS BEEN REMOVED*

I want to say again how much I appreciate the support in the last couple of weeks. A special thank you to the motherwear breastfeeding blog for telling my story, I have been able to be in contact with some amazing women through this story being told and am grateful for the experience. I now beleive that God put me in that situation for a reason and I must not fail him. Goodness knows I've had my share of tests over the past couple of years and I have learned that if I don't follow God's lessons the first time, he will keep trying!

I am working on a post which is hard for me to write but there are people who now read this blog that don't know my story and I want to share someone very special with you all. My son Alex who was an inspiration and a test to my faith, my resolve, my entire being..........