Ramblings and Photos

First off Please Continue to pray for Stellan and the MckMama family he is not doing very well and we are all waiting for an update from MckMama. I know far to well what it is like to be at the hospital with your child and have a hubby at home and other kids you miss too.

March of Dimes March for Babies


April is fast approaching and I want to thank those who have donated to Team Soli. (those who would still like to donate let me know). To date we have raised.....$15127.00! We need more walkers! It is free and it will be fun. If you are in/near Sacramento let me know and I will give you the link to sign up to walk.

Soli is doing Great. Weaning the O2 and hopeful that we will get some good news at the Resp dr tomorrow. Corbin is getting so big! He has learned a new word today. NO. I was making Bows and he kept reaching into my stuff and I kept telling him NO. He crawled away and when he came back he reached for my stuff again and before I could say anything he yelled NO to himself. LOL. He also knows who baby is. You ask him about the baby and he turns to Soli and points and says Hi. He is still a bit rough but he is learning. He is Very attached to me and Tom lately. He cries if I leave the room. I am sure teething is not helping, not to mention he just got over a double ear infection. But I am glad to report that this morning my happy, smiley baby boy was back. Yea. I missed him! He is babbling and pointing at everything today!

We have drs appointments at UCSF for Mac next Monday. I am kinda nervous. This is the first visit back in 3 years and everytime we go a surgery follows shortly. Hopefully things will be great this time and no surgery will be needed. Mac is just excited that we get to go to the family house..

Caden Continues to amaze me. He starts "special Education " preschool on April 14. This weekend he has taken to the computer. He is a Genious at the internet. He knows how to navigate the sites such as nick jr and knows how to play the games and when something came up on the screen today (a pop-up) he told me clear as day, "you have to click this close it." He was talking about the red x in the top rt of the box. He really is very smart even if he cannot function "normally".

Well here are some pics from the last week. Hope you like them..

Stellan's Name Gallery

Taken from KnowingNorrah's blog:

"Way back in August, when little Stellan was still in the womb and the doctors had given him a pretty grim prognosis MckMama followers from near and far started sending her pictures of Stellan's name spelled out in snow, apple pie, crayons and other crazy, beautiful things. And it encouraged MckMama and displayed to the eyes what was happening in the spirit. People were loving, remembering and praying for Stellan. Fighting for him the only way they knew how.In MckMama's own words from her August 8th blogpost, "What a testimony it will be to see such reminders of all the people who prayed for Stellan, that he would live!"And that is what we are doing once again. Praying that Stellan would live and be healed from this heart condition once and for all!"

Add you own photo for MckMama and Stellan. Here is ours.

Since Stellan is a Cloth Diapered baby, Soli and I used her "stash" to write Stellan's name to show we are praying for him...

Alone time!

I am seriously going to laminate this and post it on the bathroom door..

Attention Children:
The Bathroom Door is Closed!

Please do not stand here and talk, whine, or ask questions. Wait until I get out.

Yes, it is locked. I want it that way. It is not broken. I am not trapped.

I know I have left it unlocked, and even open at times since you were born, because I was afraid some horrible tragedy might occur while I was in there, but it's been 10 years and I want some PRIVACY.

Do not ask me how long I will be. I will come out when I am done.

Do not bring the phone to the bathroom door.

Do not go running back to the phone yelling: "She's in the BATHROOM!"

Do not begin to fight as soon as I go in.

Do not stick your little fingers under the door and wiggle them. This was only funny when you were two.

Do not slide pennies, Legos, or notes under the door. Even when you were
two, this got a little tiresome.

If you have followed me down the hall talking, and are still talking as you face this closed door, please turn around, walk away and wait for me in another room. I will be glad to listen to you when I am done.

Oh ... And yes, I still love you.

Mom

Waking up and Prayers for Stellan

As I sit here There is a little boy fighting for his life. There are literally THOUSANDS of people praying for this Mck Miracle. Stellan aka: Mck Muffin, Mck Miracle was never supposed to make it to his birth. But thousands were drawn to his mama's blog and began praying for him and when he was born they could find no evidence of the condition in the womb that nearly took his life. It was a Miracle it seemed.

Fast forward 4 months and he once again has the deadly heart problems that he had in utero. Each Tweet is greeted my praises or makes those following hit their knees again to ask for God's protection over this child

His mother's faith in God has me simply stunned. She has this Peace that she knows that whatever happens she will be ok and Stellan whatever the outcome, is serving the purpose that God placed him on this Earth for. I believe in God and I do think he can perform what we see as Miracles but was truly in his master plan long before we prayed. Like she says he KNEW we would all come together to pray for this little boy and God has his life and death, already set in stone.

It is so easy to Praise God when everything is going well but when things are not as we want them to be we very easily blame him. I am very guilty of this. I think we would be called Fair-weathered Christians. I truly aspire to have the faith in God that Mck Mama has.

I have seen first had his Miracles in fact I am holding one right this very minute. I long to know, to understand His purpose for my life. I think Soli is one way of waking me up, one way of opening my eyes and my heart to him to allow him to do his work in me. I will continue to pray for Stellan and drawing inspiration from his mother. You can follow Stellan to by clicking on one of the buttons to the right of my blog..

Do you ever feel like

Nothing is going right and all you want to do is cry? Yea I am having one of those days.

Today is Soli's due date and she weighs 6lbs 6 ozs. She is getting so big. Like I said in my last post, I am sad that we missed nearly 4 months of our pregnancy. I look at her and think in my mind that she is "full term" now and that had she been born when she was supposed to, that I would be able to snuggle my baby and take her places without all the wires and O2. I am sad that she still needs all of this medical equipment to survive. there is no more just running into the store. Each trip is a major undertaking with all the equipment.

Our Insurance is infuriating me. I do not understand why they have to make it so damn impossible for Soli to get the care she needs. Her discharge instructions said she is to see the pediatric Pulmnologist within 2 weeks of discharge. Tomorrow she will have been home for 2 weeks and now Tricare says that the Dr that she has been seeing all this time is not contracted and not only do they want us to see a new doctor, they want us to go to a whole different Hospital group. WTF?? What do they not understand about her being on O2 and needing a Doctor NOW?

So on top of being sad about my Due date I feel like a failure because of the insurance and frustrated with all the equipment and I'm tired. Tired of being worried all the time. I don't sleep well because I am afraid of something happening to Soli. Tom and I have been fighting for the past few days and I am sure that at some point even though he was in the wrong I will just have to deal with it WITHOUT an apology or anything being fixed.

I feel cramped and cluttered. And Overwhelmed by the clutter. I get no help with laundry, or any cleaning and I can't do it all alone and I do not understand why no one else can understand that. I mean I cannot even leave the room that Soli is in if there are not other adults there so that dramatically cuts down on the amount of housework I can get done. Any advise I am open. Remember we have 9 kids and 2 adults living in a 1700 sqft 4 bedroom house. Anyone wants to come help I am open there too.. I am so at the point where I just want to throw everything away!

Have I given my kids so much that they are truly the ungrateful brats they have been posing as? They all think the world is owed to them and that they have to do nothing in return. The mouth on my 11 year old! OMG! And Ry and Sy are getting just as bad. I don't spank my kids so any options other than that I will take into consideration. Suggest away.

I so wish I could take a nice LONG HOT bath but I have no tub and the $3000 we were going to use to get one put in had to be used to fix the van so no bath for me.

I am sure this all will pass soon but today has just been a sucky day and I had to tell someone..

Thanks for listening...

Tomorrow & 100 days old!

14 weeks old

Tomorrow is my due date for Soli and she will be 101 days old. Wow. I am feeling a bit sad and I am sure I will tomorrow too. Don't get me wrong I am so thankful that she is here with me I am just sad because of all she has had to endure so far in her little life. She should still be resting curled up warm inside of me. Unless you have had a preemie I do not thing you can fully understand what I am feeling. It is in a sense like a death. The loss of your pregnancy and the loss of your perfect birth and the waiting. I am jealous at those who complain they are tired of being pregnant all the while knowing that if it were me, I would be complaining too. Ironic huh? I stll feel jealous looking a ladies who look like they are going to explode at any second. It is better now that I can look down at Soli and know she is ok.

The regional center came out friday. We will be starting Physical therapy soon. Soli also had another eye exam Thursday and she has NO signs of ROP AT ALL!! That is a Miracle! The dr said he expects every 25 weeker to have some ROP but he cleared her and no more eye exams from him! She can see!

On the other kid front, Caden was offically diagnosed. He has PDD-NOS, OCD, Transient Alteration of Awareness. I am meeting with the school district to start him in a Special Needs Preschool. I am struggling with this. When I think of Special Ed I think of brianna's classroom and I do not want Caden there. I think he is smarter and does not need that much. He just needs a bit more one on one with a teacher. I am torn and want to do what is best for him and I am not sure if that is mainstreaming him or putting him in Special ed. Anyone have any advise? Well the kids are going stir crazy so I am going to take them out.

A $500 Ride on Toy!

It is nice to know that I did not frivolously spend $500 on a vacuum cleaner that was ONLY a mear Vacuum. I have discovered that it is actually a ride on toy!

How nice it was for the makers of DYSON to put a handle right where the rider needs it to hold on! Oh and the cylinder is perfect for wrapping yourself around for a nice smooth ride..Corbin LOVES when Mommy vacuums! He stands on it and when I stop he starts jumping up and down and squeals! At least He is out of my way and he certainly has no fear of the vacuum, (unlike Caden who runs for the hills when he sees it.)

Thank God that the makers made the Dyson self propelled because if cleaning was not hard enough, try pushing a vacuum with a 20 pound weight bouncing on it!

I wonder if this picture would void our warranty?

Oh well is it nice to know that $500 was not wasted on Just something to suck crap off the floor.

Chick-fil-A

Ok anyone who knows us, knows that we are addicted to Chick-fil-A. They are like a second family to us. I found this today and had to post it. Also here is a few new pics of Soli..

http://www.youtube.com/watch?v=NsJHqstPuNo

10 weeks
11 weeks

13 weeks
Soli and Big brother Corbin

HOME SWEET HOME at last!!

at 2:00pm today, Soli and I came home! 2 weeks before our duedate! she is 5 lbs 11 ozs on home on O2. Tomorrow she will be 3 months old. I want to thank you all for your support and encouragement over the past 13 weeks! Now the real journey begins!

GUESS WHAT.....

Monitors and Oxygen are being delivered on Monday!!!!!!!!! If all goes as planned I will be walking out of the NICU on Soli's 3 month birthday WITH my Angel!! She has been feeding like a champ and she is on 1/4 L of O2. She weighs 5lbs 10ozs. As soon as I find my cord I will update pics for everyone!!!

Someone pulled out their NG tube!

So as of 5 pm tonight, Soli is getting all her feeds by Nipple. Yep folks my angel decided to DC her NG tube. Lets say a quick prayer she takes all the nipple feeds so they do not have to put it back in!!