Schmidt Family Blog

And the boys...

2006-11-13T13:12:00.000-05:00

And here - as you can see are the very few of the boys!

No on die!!

2006-11-13T13:02:00.000-05:00

I took pics of my own kids today. And we are lucky they are all still alive! Why oh why is it that photographer's kids turn into demon spawns whenever you whip out a camera???

Here is what I managed to get- of course Ky is always my most cooperative one!

My heart is SOOO full!!!

2006-11-10T09:17:00.000-05:00

You know there are some people that you meet in your life that you will never forget. Those people who manage to stumble into your life at just the right moment for just the right reason. Sometimes these people exit your life as quickly and suddenly as they came. And sometimes we get the privilege of keeping them in our lives for a while. It never ceases to amaze me that I can be having the WORST day or series of days and then poof... someone or something happens and it gives you hope.

Look what happened to me today:
Stock 20.com

Everyone says... i don't know how you do it. How on earth do you do it? Hope. Hope that tomorrow will be better, easier, less painful, more fun that yesterday. Hope that she will just one day take off nursing again and we can get rid of the tube and leads. Hope that miraculously she will GROW a butt! Hope that her heart heals itself. Hope that the fatty filum magically disappears. Hope that it is NOT really a UTI and that we don't have to deal with that!

And understanding that for everything bad and wrong that happens in life. There is still so much good. So many things to love and enjoy. Good friends, good fun, my kids, the sun. The first fire of the season in your fireplace... a dream of possibilities.

I made a poster for my little sis for her spirit night at band... and I used a quote that i feel is so appropriate for all of our lives right now....

Dreams are reflections of all that is now, and visions of all that CAN BE!

So begins the battle.

2006-11-08T13:44:00.000-05:00

The battle of the UTI... UTI's are a side effect of a tethered cord and HIA and we honestly are lucky that it took 4 months to get one. We are running a 102 fever and feel pretty rotten. Although she is not dehydrated if she doesn't start eating we will be in trouble in more ways than one! I am honestly surprised that they didn't admit us today.

To make matters even worse my milk supply is all but GONE and all the doctors act like its no big deal. IT IS A BIG DEAL and if I can't find someone here to understand that I will be headed somewhere ELSE! SOON. I feel like a ticking time bomb. We have ONE week's milk supply and then we are in trouble there! So if anyone wants to be a pumping wet nurse to help Ky out I will PAY!!!!!!!! Wet nurse for hire!

We are headed to the lactation consultant to try and see if she has any suggestions.

Dr. Levitt emailed me back from Cincy!!! That was nothing short of amazing!!! Around here its like an act of Congress and actually corresponding directly with your doctor is UNHEARD of!!!

Say a prayer... my head is splitting open and my boobs are drying up! Lord help us all!

My dad always said...

2006-11-04T06:25:00.000-05:00

When we were growing up and we would say we were "just pissed off"... my dad's reply was always the same. "Better to be pissed off than pissed on". Well what happens when they are one in the same? I am so upset and frustrated with the medical community right now and UK in particular. They are like a monster with a million heads. They expect you to know just how to navigate the system and NO department communicates with any of the others unless you take the file with you. It is becoming a chore to get an appointment made and then lest the whole world falls down I missed one!!!! I totally flaked and forgot one. It was the day after being out of town for the weekend and I totally forgot. My bad. So I call to reschedule. The lady is very snippy and says I will have to take whatever appointment they have open with whatever doctor they can find. Ummm that would be okay for a NORMAL kid. But when you have a child like Ky its kind of hard to start over new and explain the whole shebang to them. Okay fine... this is my punishment I understand and say okay.

Next... to make a follow up with the neurosurgeon. I call - they say that I myself can't make the appt. I need a referral. Oh really? Because I was instructed by Dr.Pittman himself to call her and make an appt. THEN they tell me- well you have already missed one appt. You were supposed to have come right after the MRI to see him. OH HE!! NO. No one called and gave me instructions on having an MRI. I was just lucky that I have had one before and realized that she probably shouldn't eat. No one told me not to wear metal so we couldn't stay in the room with her.... and certainly no one told me that I had an appt because I would have been there with BELLS on!!!! So the lady FIGHTS with me for almost 15 minutes at which point I say- fine... make me another danged appt today tomorrow whenever you have one and I will BE THERE. And have the films ready because I sending them off to someone in Chicago who knows what the heck they are doing!

THEN... oh it gets better! I call her pediatrician. To make sure that when we go for her appt on Nov. 14 they will have her synages shots there. They are $1300 each so I am sure they have to "order" them! Talk to the nurse. Nothing. They did not even know she was supposed to be having them. There is nothing in her chart and they can't order them without doc's orders. And my pediatrician is not the one who ordered them. The cardiologist is the one who wants them. So I call the cardiologist. And ask them to fax her notes over to the peds... they say there is nothing in the notes about them. And that the cardiologist sometimes forgets to write stuff down so they will have to ASK her....
Its like this I didn't even know how to SAY the word synages. I am not making this $hit up. I am not trying to mooch $1300 shots off someone. I am just trying to do what the docs said they were wanting her to do!!!

Is it too much to ask for all of our 7 docs to communicate with each other so I don't have to spend days at a time explaining myself?

This was the final staw... after this I am packing up the records and heading to Cincinnati. I am all but DONE with UK.

Grief process

2006-10-28T22:26:00.000-04:00

A new found friend sent me this in an email and it helps to realize that this is a normal process!!! And as much as I tell everyone I am okay, and some days- MOST days- I am... I am still grieving. There are still days when I don't want to get out of bed. Where it feels like its a rainy nasty day even though its bright and sunny. Those days when I feel like the biggest idiot in the world. The days when I feel SO lost like I will never be found.

But you know what... those days are becoming few and far between. Its friends you Christina and Sarah that help me realize and are guiding me through this journey of having a "special" child. I am finding out how to turn this parent's worst nightmare into a daydream. Hopefully whatever dream it is will be over soon and we will be able to regain some sense of NORMAL!

Phases of Grief-

Denial-"it cant be!!'

Release-tears

Depression/Isolation-'nobody understands ME'

Physical Symptoms (neurasthenia)-'i cant go on'

Panic/Anxiety-'i cant do THIS'

Guilt-'How did this happen, what did I do to cause this?'

Hostility-'why ME and why MY baby?'

Inability to do Normal activities-'i dont want to go out, I dont want to
talk to anyone'

Social sharing-'this is my story'

Rituals and Appeasements-'i will do this right'

Hope-'someday this will work out'

Acceptance/Adjustment integration-'I'll get on with it'

I have definitely made it into the Rituals/ Hope phase- which in 3 months flat I feel like that is pretty darn good... now how on earth do I take that final step!!??????

Not Tethered!!!!!

2006-10-23T13:00:00.000-04:00

Good news abounds!!! Kyleigh does NOT have a tethered cord and will NOT need surgery for it. She somehow has a thickening of the spine but from what I can tell (and the fact that I STILL have not actually met or talked to her neurosurgeon is kind of pissing me off right now) it is not a big deal!!!!!!

Man that made my weekend a whole lot better!!! That and the fact that I got to spend time with a good friend, shoot an amazingly beautiful wedding with NO pressure, AND we left the grandparents here with ALL 3 kids! Everyone is still alive and aside from 3 phone calls to the nurse everything worked out really well!!

Here is your Kyleigh fix for the day!

And went...

2006-10-19T08:57:00.000-04:00

Monday came and went and we survived. Kyleigh did well with the MRI... but it took for freakin EVER!!!!!!!!! I don't remember an MRI taking like 3 hours!!!! Geeez... maybe it was because they were looking at the spinal cord but man... that still seems like a long time! When she was coming out of the sedation it was kind of funny... her little arms were flailing and her eyes were rolling crazy all over the place... glad there was a little lightheartedness in this ordeal!

Now we wait... its three days today... hoping that they call!!! They said 3-5 days and man I would REALLY like to know something before we leave for IL!!!!!

Monday is coming...

2006-10-13T08:02:00.000-04:00

Photo courtesy of my good friend Misty Woodward

And it feels like doomsday. I have been in a rather awful mood and been really snippy for a couple of days now and I do apologize to anyone I have snipped at. Monday is coming and I don't want it to. Its coming way too fast. Monday we will have Ky's MRI done. They will have to sedate her and strap her down. I don't want to think about that part. Then we will have to WAIT... and I CANNOT think of that part. THEN we will find out about her spinal cord.

You know.. I look at her and we have learned to mange life with her existing conditions. Its not easy but we still enjoy her. She laughs, and talks, she is just gorgeous. And right now when I look at her I don't worry. All I see is this gorgeous baby girl smiling back at me. But Monday... it may all change... I may be forced back into the world of reality where something ELSE is wrong with me perfect princess... and you know... I kind of like where i am now... dealing with life and trying to push everything else to the back of my mind... but when Monday comes I will be forced to yet again deal with more than any parent should ever have to.

When Monday comes I will want to run away, I will want to hide, I will NOT want to get out of bed. I will get that sick in the pit of my stomach feeling that just makes you want to vommit. I wonder what the cost of airfare will be to just get out of this place... When Monday comes the little bit of "normal" that we have managed to establish will all go away and we will back to phase one again.... where fear is normal, anxiety and stress are all that you can feel, and life is much like hell.

If there is anyone who can tell me how to leave this place... how to get out of this hellacious ordeal, how to make my baby girl stop hurting, start eating, and be done with it all, PLEASE I am begging you. Please... I will give anything I have, anything. Just to have her be okay.

Spirit of Motherhood

2006-10-10T09:55:00.000-04:00

When I was pregnant with Kyleigh we traveled to Chicago for a Photography Convention and I was very privileged to be photographed by the Amazing Misty Woodward. Misty is not only a good friend, but a pretty popular photographer!!! The Spirit of Motherhood is her brainchild. She has seen it through from start to finish and what a gorgeous piece of work it is!!!! I cannot wait to get my copy!! I am the belly to the right of the "believe" page. Which is all too familiar, sentimental, and appropriate for us!!!

Check it out:
The Spirit of Motherhood

Here is the link to Misty's Main Photography site - you should take a peek and send the link to any family you have in the Chicago area!!!
Misty Woodward Photography

Just chillin at Grandma Smoot's!

2006-10-09T16:28:00.000-04:00

Lord Kimberly will KILL me if she reads the title!! (Grandma Smoot!!! geez) We got to spend a weekend with some of my best photog girlfriends!! I knew I would come away with tons of great pics so I had not bothered to take any of Ky last week!! And I was right!!

These were taken by my friend Cristy of Cristy Nielsen Photography in FL... (I think she's got the baby itch!!)
Check her out!

Thanks lady u know I luv ya!!!!

On the Rise!!!

2006-10-03T21:12:00.000-04:00

Finally! Kyleigh is on the rise again!!! Her weight was up 7 oz this week!!! That is 1 oz per day!!!!!!!! I cannot tell you HOW good it feels to have her gaining weight! She took off on Saturday and decided she was FINALLY hungry! She ate for like 4 hours straight 45-60 CC an HOUR!!! That is normally what she eats every THREE!

So YAY for Ky!! I need to take new pics... she looks totally different now with some weight on her... not so alien like! BUT I am headed to IL this weekend and will seeing a bunch of photog friends so I am pretty sure I will come away from there with TONS of pics to share!!!!!!

Today's Weight: 8 lb 9 oz
(and counting!)

Fear is life.

2006-09-28T07:35:00.000-04:00

Yesterday Ky watched TV for the first time. She watched- It's a Big Big World... they sing and there are lots of colors and she was mezmerized! As I watched her I realized that she might actually be enjoying it. And as happy as I was it made me cry.

Normal babies enjoy eating, and sleeping, and just being alive. It hurts Kyleigh to eat... it hurts her to sleep, she coughs and cries out in the middle of her sleep, it hurts her if you hold her the wrong way. I have to wonder. How much does she hurt, and does she hurt all the time? Does her chest hurt? Does her colostomy hurt? Does she really like being alive? Does she want to live?

When she doesn't eat it really takes a toll on us. You wonder does she stop eating because she just wants to die? And if she wants to die am I wrong to want to keep her here??? And it scares the life out of me to think that she doesn't want to be here... because I wanted her so badly... I wanted a perfect little princess to pamper and spoil. And i love her more than ANYONE including Troy can understand.

I fear that her brothers will resent her. I don't have time to even sit down and read them a book and the amount of guilt that I will carry around forever over this is nearly unbearable. As much as I fear the long term effects of things I fear more than anything that there will be no long term. I live it total breathtaking fear that she will not live to wear the gorgeous wardrobe in her closet. And I know people think I am obsessed with shopping... but somehow it is my way of telling myself that I believe she will be around to WEAR those clothes. I keep buying clothes that are size 12-18 mo. And I asked mom if I should have bought a really cute outfit that was size two... and you know what the next one I find I WILL BUY... I have to ... because I HAVE to belive that she will be here when she is two.

She watches light- anything that is light... and I joke about it - but i truly am scared to death that there is a reason why she is attracted to the light... I am more than afraid that one day she will go to the light and not come back.

How do you do it?

2006-09-25T10:50:00.000-04:00

That is the most commonly asked question in my life right now. Even our doctors have asked me this. How do I make it through the day? Some days I have no idea why or how I made it. There are some days that I can not even tell you if or what I have eaten that day. Mt.Dew runs through my veins. But really how do I make it?

Its really simple. I exist. Things like showering, exercising, cleaning, those things get done in a hurry and are few and far between.

More than that... I have found that now I look at life in a different way. Or try to... some days no amount of prozac could help me.

This morning.. Ross managed to climb onto the counter and get INTO the sink, turn the water on and go swimming. At one time this would have bent me out of shape... now I am just excited that I don't have to do bathtime today!

At one time it would have driven me crazy if the kids went foraging for their own food... now I am just thankful that they actually ATE this morning.

Everything that could be bad or irritating - if you look at it hard enough there is something (sometimes very small) that is good in it.. That is how I make it everyday... I spend lots of energy looking for the good!

Has there ever

2006-09-22T07:50:00.000-04:00

been a time in your life when something happened and you will never forget it. And I don't just mean forget it... I mean you remember what you were wearing, the feeling in the pit of your stomach, you can still taste the awful taste in your mouth, feels the burning sting of the tears rolling down your face. Have you ever had a moment where something happened and you knew you would never be the same?

I was wearing my super cute pointed toe black sling backs, a black tank top, my blue jean maternity shirt, and khackis, I was feeling rather good that morning. I remember going to the US and watching the doctors look.... and look.... and look...................................................................

in silence.

I remember the silence. Silence is fear for me now. Anytime anyone in the medical profession is silent it is NOT good.

silence.

I remember the nurse. The AMAZING compassionate nurse. I can still see her face in my mind. I remember one doctor, two doctors, THREE doctors... all in the hallway talking. I remember totally loosing it... Crying to the point where my chest hurt and realizing something was NOT RIGHT.

I remember being so numb that I could not even FEEL the amnio needle... and lying stiff, still as a board nut because I was afraid but because I could not physically move myself.

I remember sitting in Dr.Y's office and thinking... I can't do this... I couldn't look anyone in the eye... and I am a firm believer in eye contact... I remember staring out the window and thinking... what do I do now.

I will never EVER forget that... it plays over in my head like a bad dream. But it wasn't a dream. It was reality. It IS reality... and I remember it every single day.

Numb

2006-09-20T12:47:00.000-04:00

You know I am usually very emotional. Happy or sad, up or down, I usually and feeling something all the time. Maybe its because I am tired and stressed out, but today I feel nothing. I cannot organize my thoughts enough to get anything done, the dishes need doing, the house needs cleaning, vacuuming needs to be done, laundry to be folded, emails to respond to, and I just can't get it together. I have a doc appt in 15 minutes, need to go tonight to Tara's school so I can be "trained" to volunteer, Ky has a doc appt tomorrow am, then i have a consult Friday night, then have to drive to Hazard Saturday. Maybe I am just overloaded and trying to do way too much. Maybe my brain in fried. Whatever it is I hate being in a funk... it makes me feel like I am forgetting something, EVERYTHING, and letting everyone down. Ky is sick, Ross wants to be held, Owen needs his TV fixed, my mom is calling on the phone asking me to make a decision, Troy is calling on the other phone, and someone is blinging my IM all at once... its too much to take right now... I can feel an official breakdown coming and I just wish it would happen and be done... but I can't even motivate myself to breakdown and be done with it... WTH is wrong with me?

More disappointment...

2006-09-19T20:46:00.000-04:00

Well even though overall our weight is up- our nurse came today and we are down 3 oz from last week. (sigh) Kyleigh is totally REFUSING the bottle and throwing up again. We think it is a bug but I just hope this doesn't affect her long term eating. Its like you take two steps forward and FIVE back...

As for the house... they have set our CLOSING date - holy carp!!!!!!!!! We will pre-walk our house on Oct. 11 and final walk/close on the house on Oct. 25.... I am more than completely and totally FLIPPING OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What in the heck are we going to do??? This house is STILL not sold. The market is not moving... I don't know how or what we are going to do and I just want to cry every time I think about it!

This little piggie went HOME!

2006-09-14T14:24:00.000-04:00

I took these at the hospital the last night before we came, but haven't had time to post! Owen and Ross were SO cute. It amazes me to see how much they love Ky!!! Owen was doing "This little piggy" and Kyleigh was just smiling. She smiled so much she almost laughed out loud!!!!
Another thing that cracks me up is that all my kids loved this ONE passy type. And the passy is like bigger than their HEADS in the beginning!! Thank God Kroger still carries the stupid things!~

Meha Blankies!!

2006-09-14T14:17:00.000-04:00

Yes- this one is ALSO crazy about those meha blankies. Look at the toes and fingers all curled through and hanging on tight!!

When is it time?

2006-09-14T12:32:00.000-04:00

To throw in the towel? I was reading a friend's blog today and its funny because I have these same thoughts... you fight for so long, you want something so badly, and then you wonder when is it time to stop fighting? Is it really MEANT to be? And how do you know that THIS is what God has planned for you? I truly believe that God gives us choices in all things. But what happens when we do not know what choice to make? What happens when we are SO confused that our heads hurt and you just want to go lie down and ignore the world for a while? What happens when we pray and pray and receive no answer? It makes you feel like God has abandoned you or is not listening... and that makes your days oh so much harder. I know that after the mountain peak comes the valley... today is a valley day. I am just praying today that instead of getting what I want or even need that God can help me learn to enjoy the valleys. That I can find love, joy, peace, patience, kindness, goodness, gentleness, faithfulness, and self control in every single day - even those days that you want to sleep through!

Just keeps getting better!!

2006-09-13T20:33:00.000-04:00

Well we have had two really good days with Ky!!! Yesterday our home health nurse came and visited us. She is very nice and was very helpful. She said that Ky will qualify for some assistance with medical bills (possibly 100%) because of her condition!!! YAY!!!!!!!!!!!!!!!!!!!!!!!! That is a huge relief to me...

We also visited her cardiologist again her weight is up 15 ounces from the last time she was there!!!!!!!!! So we have gained almost 1lb in less than a month!!!! That is such great news!!! We are headed onward and upward!!

We also looked at two more spaces for a studio today. There are so many decisions to make I a have a complete headache. I have no idea what to do. What I WANT to do is one thing, what we CAN do is another, what we WILL do is probably a third. And it hinges on the SALE of this house....

9 OZ and counting!

2006-09-11T07:23:00.000-04:00

OH OH !!! I totally forgot to tell everyone!!! We gained 9 oz in one week with the additional nutrients from the NG tube!!!!!! YAY!!! YAY!!! And we are NOT adding any formula- that is ALL mommy milk!~!! I cannot even begin to tell you how happy we are about that!

More amazing kindness!

2006-09-11T06:28:00.000-04:00

I have this guilty pleasure... shopping at yard sales!! It started as a way to sustain because we did not have the means to shop at retail and now its just an old habit... something that makes me FEEL good!!! Getting stuff for a bargain- its the thrill of the hunt I guess!

Saturday am mom and I were out hitting up a couple of yard sales and it was a pretty BUST day. I had to call Troy to get directions because I was totally lost trying to get to the one I really wanted to go to!!

So while on the phone Troy says that the mowing crew was there. HUH?? Our church friends have been so amazing to us. The young men were there again (for the second time) mowing and manicuring our yard... and not just mowing, but weed eating, edging, cleaning up toys and rotten apples from the back yard, raking up all the grass clipping and spreading them carefully in the garden, trimming back dying plants and trees, etc etc. It was like a small army.

THEN before I could get home... the cleaning crew was there... attacking the bathrooms, dusting, vacuuming, stripping off all the bed linens, washing, folding, mopping scrubbing... and in less than 2 hours my whole house was sparkling....

BUT WAIT... THERE'S MORE!! At 4:30 before we were heading out the door to a session yet another person was knocking on my door to deliver dinner. Warm and ready to eat.

I am amazed by the outpouring of love and caring that we have received and continue to receive daily!

THEN I open the mail and there is a strange envelope with a gift certificate for merry maids service to have my house cleaned.... from a dear and very special friend...

my heart is SO full and tears fill my eyes when I think of how blessed I am!

now for the fortunate

2006-09-10T17:06:00.000-04:00

forgot what else I wanted to say!! LOL

I realized the other day how fortunate I am to live in the same city as the children's hospital that we frequent. To be able to visit the doctors that Ky needs anytime. To have access to some of most prestigious health care professionals in teh world and to have doctors who geniunely CARE about you is truly amazing!

I watched as the family in the room next to us washed their clothes in the shower while staying at the hospital and thought of how I had been complaining about running back and forth doing laundry... then I realized what a blessing it was to have a place that I COULD run back and forth to and wash and shower.... it helped remind me- there is a blessing in everything in life.

Fortune and Fortunate

2006-09-10T16:55:00.000-04:00

I have no idea what is planned for our lives. Sitting here almost two hours waiting for people to visit an open house... not one has shown up. No calls this week, no offer, no showings... nothing. I am scared absolutely to death that we are not going to be able to sell this house and that our baby house that we have seen every single beam go into is going to go to someone else. Maybe to someone that it is JUST a house. Just some place to live. Will they love our house like we do? Probably not. And you know... its not just about the house to me. I have really been thinking about what this house is and what it means to us. Other than just wanting a house with the bedrooms and laundry all on one level this house is a LOT more than just a house. This house represents so many things to me. I feel like watching this house slip away is like loosing my dream, my hope, my faith in everything working out just the way it should.

This house is not just a house. Everything we have ever set out to do in our lives we have done. Bought cars, houses, had kids, did the college thing (even though I had no desire to finish because if I really wanted to I would have), started a business... etc etc. This house is the start of everything new for us. It was supposed to be perfect, just like our baby, just like our studio. But none of those three seem to be working out as planned.

We have spent so much of our lives trying to fix things that were broken, or make do with yard sale finds, remodeling because we could never afford what we really needed or wanted. To fail at owning this house is to me almost like failing at life itself. Its like saying I might as well quit my business, because that too will eventually fall through. Its like agreeing with all our friend who said our marriage will never last and just calling that quits too. So you see I CAN'T loose this house. At any cost I MUST make a way to move into this house and truly once and for all make it our home.

Watching this house being built we have taken get pride and pains in documenting it from the concrete to the shingles. Caring for it in its infancy. Taking pride in knowing that it is going to be finished some day soon and stand tall as a huge amazing house that is filled with such love, joy, and pride.

We have visited our house almost every day since it was nothing but a pile of dirt. I cannot imagine having to say goodbye to it and I pray and pray and pray that I won't have to....