Random Ramblings of a Mom

Quiet? Is that what it is?

2009-08-27T10:06:00.000-07:00

Yep Quiet. I am not sure how to adapt to this new "Quiet" house. The 5 older kids started school on Monday. Kassi started full day Kindergarten. And even Caden has Preschool from 11:45 to 3pm. So after he leaves the 2 babies go down for naps and I am almost at a loss as to what to do with myself (besides the obvious cleaning). It is amazing how much you can get done with no kids underfoot or messing things up as quickly as they are cleaned.

It is a very welcome (yet lonely) break. I cannot wait for mom's group to start back up so I have someplace to "hang".

As we settle into this new schedule I find myself much less stressed (at least till 3 pm when everyone is home again.) As soon as my iphone decides it's done syncing with my computer I will upload some pics of the kids from the first day of school. For now I am going to go put Caden on the bus and clean the bathroom while the babies sleep.

In the mean time will you please pray for Baby Ryan. He was born with his heart beating OUTSIDE his body. He is 6 months old and had surgery to put his heart back into his chest today.

Also I just found out today that my friend Kathi's Husband was in a motorcycle accident last week. His is out of ICU but in a wheelchair and pretty broken. Kathi and her husband has a lot of kids like us and they can use your prayers for a quick recovery.

Sorry..

2009-08-17T23:06:00.001-07:00

Sorry everyone.
I have just had no words.
I have been busying myself with the bus and am happy to say the work seems to be paying off. Not money wise but it is a good project.
I have just had nothing to say. My life is just so.... in pieces right now and I am trying to figure out how to put them all together again. I feel like my life is a mirror that someone dropped. I am pretty sure all the pieces are here but I cannot seem to figure out how to properly fit them back together again.
I am torn between What I think is best, what my husband wants, what everyone else wants and what needs to be done and What I want seems to have gotten pushed aside though I know if I just do what I want, I will have less stress and most of my family will be better off for it. So how come I cannot just bring myself to do it?
I guess cause I feel guilty.
Why I am not sure. It was not my problem to begin with I just had to take it on and now it has become MY problem. It is a daily struggle and I hate feeling like I'm the bad guy if I don't want to deal with it.

Why do I hold onto things? I mean useless crap, previous problem aside, I have too much shit!
Why can I not seem to let things, Material things, go. I feel the need to simplify my life, I am tired of the constant mess, the constant state of Chaos, the constant fretting over stupid things.
Kids are happy so I guess not all is bad. But Tom and I have not really talked in weeks, we get mad easily, he never seems happy.
He is different.
I really think Iraq changed him and not for the better, but no one cares. So we deal. We deal with the constant yelling and the constant "bad mood" and I deal with the constant feeling of not being good enough.
At anything.
I cannot keep the kids and the house alone yet that is what I do and here is the only place to let it out. I so often wish to seek the answers from God but damn it I am too busy to have the time. And honestly I am not sure I want to ask. I have such a hard time trusting in him and I question constantly why my life is the way it is. Did I not go to church often enough as a kid? I don't particularly care to go even now as an adult. I want to be closer to God but cannot bring myself to do it. Lack of time? Energy? Afraid of what I will discover? All of the above and more?
I know he has seen me though some hard times and I know it is because of his love and grace that Soli is here with us. And I do thank him for that but that is about where it stops. Well maybe not stops but is on pause. I long to be happy, feel important, useful, adequate even. I want to enjoy my kids because they will not be kids forever and I do not want them hating me when they are older because I did not do something or for them to feel inadequate in any way.
Ok I am going to bed, Tom should be asleep by now and someone has a Dr appt in the morning. School starts in 7 days. I am glad the kids (most of them) like school and Kassi is starting Kindergarten. She is turning 5 on Thursday. They are all getting so big. I am almost afraid to blink cause they might be gone. Goes so fast.

Everything has it's time...

2009-07-30T23:08:00.000-07:00

There comes a time when you need to stop thinking about other people and start thinking about yourself. For me I think that time is now. I have always put others before myself and you would think I would be a happier person for it. But that is not so. I think I have done for others to the detriment of myself. So I am going to try another route. I am going to do for me and if it works in MY plan, schedule then I will see if I can fit them in. Perhaps doing for myself more will make me a happier person.

It's been...

2009-07-24T21:50:00.000-07:00

One of those days, no one of those weeks....

BIG NEWS!

2009-07-23T10:24:00.000-07:00

Big news on the twilight bus blog. Go see....

www.thetwilightbus.com

My heart is still racing!!

Drugs...cleaning and Party Favors!

2009-07-15T22:40:00.000-07:00

The title says it all. I got Drugs today! Woo hoo. I have a full arsenal on hand for the killer headaches and also some "happy drugs" Well I guess we will see how "happy" they are in a few weeks.

Cleaning... a never ending job. But I downloaded the Twilight series so I can listen to my books while I clean. Tomorrow morning is cleaning the boys room. I have sooooo many clothes to put away! Oh yea and about 10 more loads of laundry!

Party Favors. Well water bottles.

Yep been working on making the water bottle labels for my cousin's baby shower. I cannot wait for everyone to see them! I was up until 2 am the other night creating them then had to go to kinkos to print and laminate then. Now I have to cut them all and put them all on the water bottles.

All 60 of them!

I really hope she likes them! I also worked on her diaper cake and 2 other presents for baby girl that I cannot show yet but I am sooo proud of them! OK well CJ and M are home and I am gonna go to bed. Soli gets a new Mic-key tomorrow so it may be a LONG day...

Moving rooms and Making room...

2009-07-13T22:37:00.000-07:00

Yep you read that right. I have been moving rooms around and making room. For Lily and Meghan. As of the end of next week Meg and Lily will be living with us. I am kinda excited. One to have Lily here (yes I already shopped for many matching outfits for her and Soli!) but to also have Meghan here. Another person to talk to and have around.

Tom is leaving on the 18th for AT and will be gone till Aug 2. I am going to be calling my Dr tomorrow. I think I want to get back on the Wellbutrin, I am just not myself. I know the migraine I have had since last night does not help (I just cannot get rid of it!) I nearly lost it today and I just feel sad all the time. Hopefully the Wellbutrin will help. I hate the person I have become.

I am still waiting for help with Respite for Brianna and the nurse to help with Soli though I am nervous about the nurse for Soli. I guess I just feel that I should do everything for her. She is doing great with Physical therapy and her therapist is the best! I think she will be rolling from her back to her tummy soon. She is trying really hard! She moves herself around her bed. She is 7 months old now. I cannot believe she is closer to one than to a newborn! God I love them all soo much and I hate that I lose my temper so easily. I don't hit but I do yell. ALOT. I do not want them to grow up like I did. Feeling like they were just in the way or mistakes.

I was told by a "family friend" that I was not wanted by my parents and my family is so screwed up! Really I do not know many of my brothers or sisters. I do not fit in with my Father's children. In fact I think I am more a pain in the ass for them than anything. I really know nothing about my father and his side of the family. I am the outcast from that side and I am not exactly sure why. I know they do not care for my mom but like I said the wheres and whys are a mystery to me.

Only one sister kept in touch when I was growing up and I am not invited to family events. In fact the first time one of my brothers talked to me in 20 some odd years was to call to tell me I needed to sign a form about our father's residuals and money. Honestly I haven't had the time or money to get the form signed but I think it may go deeper than that mentally. I will go and get the form signed now that I finally got some money and send it to them. I am going to send a letter that they can have everything from this day on. It is too depressing so I would rather give everything up then they do not have to wait for me again.

Kassiah told me the other day that Mac told her that she was a mistake and wanted to know if it was true. I am upset that Mac would say something like that to her but even more upset that anyone would think it. I feel like I have failed them. Apparently my best is not good enough and I don't know how to fix it. How do I show them how much I really do love them? I am not good enough to be their mom. It is not fair to them. Just because I am screwed up doesn't mean they should have to suffer. I really hope that by asking for the wellbutrin it will help me become a better person. I was really mean today and I am so upset with myself.

Well this entry became a whole lot more than I intended it to be but I think I needed to get it out. I am going to make sure tomorrow is a better day and if anyone is actually reading this, thanks for letting me Ramble!

WORDLESS WEDNESDAY: How I spent my 4th of July Weekend.

2009-07-08T21:52:00.000-07:00

My encounter of the raving kind...

2009-07-07T23:50:00.000-07:00

Had to bring this entry over from the bus blog! http://www.thetwilightbus.com/ ENJOY!

OK I usually do not write about personal stories on this blog but since it had to do with the bus I figured Why not..

We were out and about in the bus today. I went to Toys R Us to exchange something. Well some of the kids did not want to go in (as I was only running in to the counter and back) and having 2 teenagers in the bus, I decided to let them stay in the bus and read their books and listen to the music.
After about 4/5 minutes I came back out (now remember I am in the spot closest to the entrance literally 20 feet away) and I come out and am immediately attacked by some guy ranting and raving at me. He literally jumped on me as he asked why I would leave the kids in the bus. I informed him that I had 2 teens in the bus and it was perfectly legal and safe to allow them to watch the few little ones for 5 minutes.
His minion (wife or girlfriend I think) starts ranting about how she gives to the "foundation/organization" and comes out of the store to see kids in the bus and how appalled she is. I informed her that I was not an "organization" and I had no clue what she was talking about and she starts yelling at me telling me not to lie to her about being in the "organization". I politely say again that I have no clue what she is talking about, I have gotten no money from anyone. The man says that yes I am an "organization" and she gives money to them. Once again I told him I did not know what he was talking about that the bus was a privately owned vehicle. He asked me what the web address is and I told him a link to our blog. He says "Oh and what will I find on this site?" I proudly told him lots of pictures of an old school bus!
I climbed into the bus as the raving guy says the police are on their way. I told him "well my kids are hungry and I am going to go feed them lunch feel free to send the police over to Burger King if you want." I close my door make sure kids are belted in and back out of my spot with the man yelling at the lady to "follow her!"
Needless to say half way to BK the police pull the bus over and 2 officers (from different cars) come to the bus door. I opened the door and welcomed the officers aboard the bus. They came in and asked me if there was a problem and I let them know what went on. They of course ran my licence to make sure I was not some Kidnapping psycho or something , Nope clean as a whistle not so much as a traffic ticket. They came back and I spent the next 5-10 minutes telling them the story of the bus. After nearly picking them up off the ground as they asked if all the kids were mine and informing them that yes they were, they checked out the bus and said it was awesome and for us to have a good day. I closed the bus doors and continued to BK to feed the now starving children.
I do however wish I had waited in the parking lot for the police so they lady and guy could see that I did nothing wrong and they had their panties in a bunch for nothing. Oh well.
Like I said before, Life is never dull around here, especially when you drive a renovated school bus full of kids!

AFTER SOME RESEARCH I DID FIND THIS;
Maybe this is what she thought I was.....
The Twilight Benefit Foundation is a "501(c)3" charitable organization, existing to support and further social, philanthropic and humanitarian efforts to give something back... to the community and to our fellow man.Our focus is on social needs and concerns, the preservation of our environment, and the continuing research for the elimination of catastrophic disease. We strive with uncompromising passion to leave this world better than we found it.

I guess leaving the kids in the bus (thus avoiding several temper tantrums and many Mommy buy me this), did not fit into their idea of striving to leave the world better than they found it, though I can guarantee that Toys R us is better for it!

A SN Parents Bill Of Rights

2009-07-03T14:38:00.000-07:00

Written by Ellen S.

Ellen can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder "What if…" every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people's ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child

We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question, "What's wrong with him?"

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child's disabilities.

* We have a right to talk about how great our kids are when people don't get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they're infants, preschoolers and elementary school age, but when they're in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@ gmail.com.

Chaos and Cookies

2009-06-24T09:56:00.000-07:00

If you know me you know I almost always live in a state of Chaos. I mean with 9 kids going 12 different directions (yes 12 and I am not sure how they accomplish that) it is a wonder anything gets done!
I will be the first to admit I am not perfect, My kids are not the perfectly well behaved little kids holding mommy's hand in the store not asking for a thing. Mine are usually the ones playing grab ass as my husband calls it, down the aisle. There is often a small child crying because someone touched them or they cannot have something. Many times more than one. My son is often looking like a lost tourist among the sea of racks and aisles.
Wherever we go we are noticed. Sometimes that is good (when the kids are half way behaving) and many times it is not.
There is no such thing as a quick run into the store. Each trip takes lots of time to prepare for.

My life seems at times, like when you are baking cookies. (My cookies come pre-made but let's just roll with this.) To bake cookies you have to get all the ingredients together, You have to measure out everything. You have to pre-heat the oven, mix, roll out, grease the pan, cut the cookies and then finally put them in to bake. You await the final buzz of the oven. In the meantime you smell the cookies baking and you imagine what it will be like when they are done. You look at your kitchen covered in dirty mixing bowls and cups and dusted with flour. It is a bit overwhelming when you are in the moment, but you know that in the end the cookies will be worth all the mess.

Right now my cookies (Kids) are in the oven (growing) and I am staring at my dirty kitchen (my daily chaos of a family of 11) But when the timer goes off, I know that the Cookies will be well worth the wait and the mess left behind.

Throwing in the Towel

2009-06-16T23:55:00.000-07:00

Do you ever feel like throwing in the towel?

I for one, have days when I wish I could.

Do you ever think about what your life would be like if you just quit? I mean what would happen if you just walked away?

I have often wondered what it would be like to be the irresponsible parent. You know the one who is able to walk away and leave it all behind. I KNOW I could never really do that but I do wonder sometimes. I wonder what I would be doing right now if I was not cleaning house, cooking dinner, chasing kids, running to dr appointments, being a wife.

Would I be happier?

Sadder?

Would I know what I was missing or because I never had it, would I even care?

Where would I be?

Who would I be?

The saying "the grass is greener on the other side" applies here. I can think about all this and think of how my life would be somehow better but would it really?

I had a neighbor, whom my daughter CJ helps with shopping and cleaning, attempt to throw in the towel this week and I watched my 11 year old come home upset and confused. I have had to explain more about life in the past few days than I ever though I would have to explain to an 11 year old.

We always dream of it better but honestly I don't think it would be.

Different yes but not necessarily better.

As much as I have days like today and I am very close to throwing in the towel, I check on my kids (who after MUCH arguing and a day full of being annoying and not listening) who are asleep in their beds, I know that it is because of them that I will never actually thrown in the towel but I will use that towel to wipe the crap off my kitchen table!

I am still figuring out what my life is supposed to mean but I do know that I was supposed to be these children's mom for whatever reason and I have to do all I can to be the best I can for them.

As for the proverbial "towel" it is now piled with the mound of dirty clothes in the laundry room and someday I will get caught up and that towel will once again surface but for now at least my kitchen table is clean!

Ever wanna post to noone?

2009-06-16T22:29:00.000-07:00

OK I was looking for a good sounding board.

Somewhere I could post anonymously about whatever was bugging me.

You know you always feel better when you say what is on your mind but many times you can't. SO I came up with this blog.

I am going to use it to complain about whatever is bugging me and I opened it up to anyone else who cares to do the same .

http://imanonymouslyme.blogspot.com/
It is a great place to let it all out.

Share your rants, raves and have your own Pity party.

Everyone needs to have one at some point and you know you feel better after you let it out.

Something Good from Something bad..

2009-06-14T11:57:00.000-07:00

Visit my Blog just for HWWP. www.HiswillwednesdaysPrayers.blogspot.com

Lazy Sunday?

2009-06-14T08:55:00.000-07:00

Soli and Lily Watching Riley graduate from Kindergarden

I am sitting here trying to figure out what to do today. I am down 3 kids so I can take the minivan. Maybe the outlet mall or swimming. Except Soli can't go in the pool and it might be too hot to have her just sitting outside.

I do have good news though! Soli has been taking all her daytime feeds by bottle for the past 2 days! I don't worry too much what she takes during the day because I can make the calories up overnight on her continuous feeds. Yesterday she drank 4.5 bottles (she SHOULD take 5) so not too shabby if I do say so myself.

Her tummy the day before surgery (yes at 9 lbs she still fits in my bathroom sink!)

Here are some pictures of outdoor fun with daddy last weekend.. Unfortunately daddy has drill this weekend so we are on our own.

Prayers for April Rose a fake.

2009-06-11T23:12:00.000-07:00

Last weekend and for the past few months I have been following the blog of a young mom named "B" and her little girl April Rose. Honestly the blog was well written and even though her daughter was not supposed to survive he faith in God and her strength were amazing! I prayed for this little girl daily! Last sunday I sat and pressed refresh a million times while little April Rose was being born and held my breath with each update. Until the pictures were posted... I noticed the babies in the college one were not the same baby and the baby looked fake, like a doll even. "B" was exposed as a fake and "B" was a woman named Beccah Rose Beushausen. Little April Rose? None other than a baby reborn doll.
Here are some pics of Beccah and April Rose.

This frustrates me so much but I will take from this that I did find some words of comfort in her posts and she did get my prayer requests for Soli out to more people than my blog would have so I will accept that is what all this was for. I am however glad that there is no dying baby named April Rose but for every fake April Rose there are 100 other really sick babies so keep praying folks.

Wordless Wednesday

2009-06-10T13:34:00.000-07:00

Not what I had planned.

2009-06-04T19:01:00.001-07:00

How many time have you set out to do something and it just didn't quite turn out the way you planned? Or have you ever planned out every detail of something just for it not to go as you had planned?

Sometimes I think it's God's joke to give us the illusion that we have any say in what happens to us. That's all it really is. Planning anyhow. It's an illusion. We can plan for what we WANT to happen but honestly we have no true control over the ultimate outcome of anything.

When I was little all I want to do was grow up and be a mommy. I planned to have kids and lots of animals. Be well off, not rich but comfortable. I had all these plans as a little girl. Over the years plans changed as opportunities arose, but ultimately I got what I planned for.

Well....sort of.

It was not my plan to get married, get divorced, get re-married. It was not my plan to cart kids to non-custodial parents for visits.

It was not in my plan to have 10 kids. Nor was it in my plan to raise someone else's kids.

It was not in my plan to have disabled kids.

But the best laid plans can become not what was planned.

When I met Tom it was not in my plan to have 5 kids in 5 years.

It was not in my plan to deliver 2 kids in the same calender year.

It was not in my plan to deliver a 25 weeks 25 oz baby and it was not in my plan to spend a total of nearly 4 of her first 6 months in the hospital.

It was not in my plan to have endless medical appointment for my children.

It was not in my plan to have a section in my house where Medial supplies are stored.

It was not in my plan to hear the constant hum of an oxygen regulator in my home nor was it in my plan to have the ability to recognise an apnea monitor's wail from anywhere in the house.

It was not in MY plan.

But it was in God's.

At times I have a very hard time dealing with God's plan. I want it my way, according to my plan. Those who know me, know I am a very take charge kind of person. I am the kind of person who goes after what I want and I am very determined and usually prevail.

I am being humbled now. At least I would rather say humbled instead of broken down.

This whole "my life with Soli" part of my life reminds me of boot camp. In boot camp the RDC's job was to break you so they could then build you up the way they wanted to to be. Lately I have been feeling broken down, nothing is what I had planned for me or my family. I am thankful for Tom though I feel like at times we are being so stretched that we might break but he is there when it counts. I am thankful for my Internet and IRL (in real life) family and friends, my blog readers who give me someone to talk to.

I guess now I have to look to God and trust in him to build me back up.

Perhaps this is what was in his plan all along even though... It was not what I had planned.

Pea is 9lbs 4ozs! And out of Surgery!

2009-06-03T13:56:00.000-07:00

The Board I watched for an hour and a half, telling us Peanut is out of surgery and in PACU.

We stayed in recovery for about an hour and a half and got Angel some pain meds and then went up to our room on the 6th floor. Now she is restless but seems to be doing good.

Her heart rate is up a bit, respirations are a bit fast and her O2 sats are hovering in the low 90's but so far so good. I held it together pretty good until I got the call that surgery was over and she was going to recovery and then I realized I had spent the previous hour and a half barley breathing. For all those interested here is what her tummy looks like right now:

In about 6 weeks the tube will be removed and replaced with a Mic-Key button. Ok well she just got some more pain meds so I am going to rest for a bit. Getting up every 2 hours all night last night was not conducive to a good night's rest for mommy..

See you later peanut...

2009-06-03T07:36:00.000-07:00

I've done it and unlike last time I am not crying.
Not because I am not nervous for her but because I know I am doing the right thing.
Hopefully she will not need the G-tube for a long amount of time, but right now it is the right choice.
Now we will be able to see her beautiful face without tape all over it.
Now she will look like a normal baby and the first impression strangers get will not be of a sick baby.
No longer will I be greeted by "Adorable baby what is wrong with her?"
She will no longer be defined by the yellow feeding tube that covered half her face.
Though not "Normal" (see this post about that word) she will at least for the most part APPEAR "Normal".

So now I sit here watching then little blue screen (BYW she is SI..A,S)that has now told me her surgery has begun and know that she is in God's hands and that he will take care of her.

Davine intervention? Karma? Revenge?

2009-06-02T15:48:00.000-07:00

This morning I decided that I would go tie up some loose ends with the bus stickers and take the kids to the flea market.

Well anyone who has been to a flea market can tell you parking is less than ideal. Since I had Soli and the other little ones I decided I would just pull to the side of the aisle and wait for one of the handicapped spaces to open up. After 10 mins I saw someone come from the flea market and when they got to the car on the right of me I put my blinker on to signal I was going to park there. As I was waiting for this person to back out, a lady in a white car pulled up between me and the car backing up.

Surely this lady knew I was waiting for the spot and was not going to try to steal it right?

WRONG!

As I realized her intentions were to snipe my spot I honked and she looked at me. I told her I was waiting to park there and she shrugged her shoulders and shook her head and mouthed that she was going to park there. I politely mouthed back that I was waiting and she again shrugged her shoulders and then pulled into the spot.

I sat there dumbfounded as I watched her jump out of the car throw her kids in the stroller and run into the flea market. OMG I was pissed!! As I sat there trying to pick my jaw up off the car floor and take a few deep breaths, another spot 2 spaces over opened up and I parked.

I got the kids out and decided I was going to look at her car. She had no handicap plates and was not displaying a placard.

The fine in our town for parking in a handicap space without proper placards or plates:

Still pissed at her I call the Police and told them there was someone parked illegally in a handicap space.

The officer quickly responded and I told him the story.

"Now" I told him, "had she pulled a disabled person out of the car I may have been more forgiving but she was just plain rude." The officer agreed with me. I left and took the kids into the market and when I came out this was her car and this is what happened:

Davine Intervention? Karma? Revenge? Whatever you want to call it, I can guarantee she was not prepared to spend over $400 to go to the flea market today. Wow she got some really expensive fruits! I hope they are good!

45 hours

2009-06-01T09:48:00.001-07:00

It is hard to believe that in the past almost 6 months we have gone from this:

To this:

From 25 ounces to 8 and a half pounds!

5 months and 5 days ago I was here:

Watching them wisk my daughter off for Heart Surgery.

Today I am holding her closer knowing that in 45 hours I will once again watch my daughter roll thru the doors marked Surgery and I will take a long deep breath as the doors shut behind her knowing I will not breathe again till I am by her side in recovery.

I think I am more scared about this smaller surgery than I was about her heart surgery. Maybe it's because I cannot picture my life without this little wonder. Because since I have been with her all this time I know what I would be missing if she was not here.

I have been so torn about this surgery. I want to do what is best for her and after much deliberation, I think this is it. I can only say I think because I do have some reservations though in the end the benefits far outweigh the negatives.

45 hours.

45 more hours to look at her perfect little body.

45 hours more to kiss her little face.

45 hours more before she is changed forever.

45 hours more to hold her close, snuggle her body and breathe in her scent before handing her over to strangers.

45 hours.

So far yet so close. So for the next 45 hours I am going to love on my daughter, not think of the what ifs, cherish every coo and movement, every smile and even her cry.

45 hours more that I am going to pray to God to keep her safe and pray to him for the peace that I am making the right choice for her.

To past the time....

2009-05-31T21:29:00.000-07:00

LET THE COUNTDOWN BEGIN!

SO NOT FAIR!!!!!!!

2009-05-30T08:14:00.000-07:00

Movie Trailers - Movies Blog

Don't you just want more??? AACCKKKK! NOw you know I will figuring out what channel is MTV and I will be tuned in for the premere of the trailer for Twilight 2: New Moon. 9 EST Sunday on MTV.

Kickin it Old Skool! LOL

2009-05-28T21:27:00.001-07:00

OK since I just gave my big sister my blog address, I though it only fair to post some old pics.. Enjoy!
Pics of My Bio Dad, Older Sister, Mom and Me.

Prayer moves Mountians...

2009-05-28T16:01:00.000-07:00

As you might have noticed I added a "Praying for Soli" button to the right side of my blog.

I hope you will take it and use it because as the title says Prayer Moves Mountians.

Before she was born I asked for prayers for her to stay inside till she reached viability.

She stayed in 2 more weeks.

When Soli was born at 25 weeks weighing only 25 ozs, I asked for prayers for her to survive.

She is nearing 6 months old.

At 17 days old I asked for prayers that she make it through heart surgery.

She flew thru with flying colors.

I have asked several times for prayer for our beautiful Angel and now here I am asking once again.

Wednesday June 3 at 7:30 am Soli will be undergoing yet another surgery. She will be getting a G-tube placed. I am asking for prayers again for God to guide the surgeons and once again shine his mercy and grace on our Angel.

I will update on Wed via twitter so you can follow me on there (Link on the right----->)

She will be in the hospital for a few days.

Also please pray that I can handle all these new things that come with having a Micro preemie. We have dealt with feeding issues before but Soli is a whole new game. It is upsetting to me that I cannot fix everything. As her mom I want to make it all better and I can't and that is something I am finding extremely hard to deal with. Please pray I can find the strength and trust in God to help me accept all that has happened, is happening and what is to come. I do not know what great things God has planned for our little Angel but I do know they are great!

If you are a loyal Follower THANK YOU. Without you I would feel so alone.

If you are new to our blog, Please click "follow" in the right side bar so that I may know you and visit your blogs and pray for your families also. Thank you all for taking time from your days, from your schedule, from your families to read about ours.

2009-05-26T18:48:00.000-07:00

The Big Spill

2009-05-26T10:31:00.000-07:00

Corbin had a rough Memorial day....

While outside with his sister he had a stroller accident. My poor baby spent dinner time in the ER. Poor thing was so beat up though today he looks better on his head but his hand looks worse.

I have a state hearing for MacKenzie today so wish me luck. If this goes our way it will be one less stressor on us..

Whirlwind...and a white flag

2009-05-24T18:39:00.000-07:00

Whirlwind of Emotions that is. So much is going on and has gone on in the past few weeks. 2 Babies who's blogs I have followed for months have gone to Heaven, Friends and family are having babies. Corbin is mobile, The bus is being painted (the bus is my release) Soli is... Well Soli is heading in the right direction... I think....

I have so many emotions running thru me lately.
Sadness for Kayleigh and now baby Faith but relief that they are free from their broken bodies.
Rejoiceful that Myah got 93 glorious days with her daughter because she chose not to take Faith's life but to allow God to chose when she had to leave.
Happy Casey is having her little girl and nervous at the same time because I know just how fragile a pregnancy can be.
Thankful my friend D is there to talk to.
Anger that I cannot keep it all together.
Frustration that I cannot seem to get the kids to listen, help or even care about anything or anyone other than themselves.
Depressed about the state of the house and the fact that I cannot get a break.

Disappointment because I have failed Soli and now I do not know which is the right move to make. What if I chose the wrong thing for her? Why do I have to make the choice alone?
Resentment that Tom does not seem to deal with the kids well at all anymore (since coming home from Iraq.)
Loss because the husband I sent to Iraq is not the same one who came home to me.
I feel like holding up the white flag and waving it frantically hoping God will see it.

(I think he is up there laughing at me. "Tis no rest for the weary!")

Faith has flown to Heaven

2009-05-23T21:58:00.000-07:00

www.babyfaithhope.blogspot.com

Please take a moment to pray for Faith's family. Faith was diagnosed in utero with anencephaly. The doctors told her mother to terminate her pregnancy because the baby had a 0% chance at survival. Her mother chose to carry her and to cherish the time that God would give her with her daughter. Even if she did not survive to birth her mother was determined to carry her untill God chose to take her. Faith made it thru the pregnancy and delivery and lived for 93 days! Today Myah held her as she made her way to Jesus. Please keep their family in your thoughts tonight.

Cloth Diapers

2009-05-21T15:26:00.000-07:00

Ok many people know that I cloth diaper my babes and there is a new "system" out called Gro Baby. I would LOVE to try these as I think I almost have every kind of dipe out there and have still not found my to die for ones. You can check out the gro baby systems here Gro Baby.

An Award... For ME??

2009-05-19T08:26:00.001-07:00

Can you believe it? I got a Blogging award! Reveda my friend from India (who has been following my blog since shortly after Soli's birth) has given me the "Honest Scrap" award and has tagged me to say 10 things about myself - with full honesty. So, here goes -
1. I am a very determined person.

2. I am not used to being told no or not getting my way. This has served me well in my life and I don't let anyone tell me I cannot do something.

3. I moved in with Tom the week after we met. Yea you can ask him about the trailer.. Haha.

4. I have always known I would have lots of kids (or at least hoped I would)

5. I am a shopaholic but my forte' is thrift stores.

6. I am currently obsessed with Twilight Yes Pathetic I know but still, I wanna be a Cullen, I mean who in their right mind wouldn't??!!

7. I am not a neat freak and my Husband is OCD (great combo there huh?!)

8. I have delt with nearly all of MacKenzie's surgeries ect by myself.

9. I do not trust many people with my babies, once they are older and can fend for themselves then I let up quite a bit but only I can properly care for my baby in my mind.

10. How do I do it? Honestly I do not know. I don't know how I do not go crazy, well since we are being honest I do feel crazy at times, I even have momentary bouts of feeling like I am not good enough to do it and the occational moments of I no longer want to do it (I am only human!) but somehow, I just do.

OK I have to tag a 7 bloggers for this award:

1. Dawn
2. MckMama
3. Jennifer
4. april's mom
5. Casey
6. Sheree
7. myah

When you give a kid a twinkie,

2009-05-18T16:48:00.000-07:00

When you give a Kid a Twinkie...

You...

Get...

A....

MESS!

Not Me Monday

2009-05-18T07:29:00.001-07:00

OK let me think....
I did not go to my friend Katie's house to help her clean and Laugh hysterically at her when she freaked out because she found a HUGE black Widow! NOT ME!

I did not spend over $100 in matching clothes for my daughter and Granddaughter and then refuse to send said clothes home with my granddaughter. NOT ME!

I also did not start a blog about the bus and I did not buy the domain name www.theTWILIGHTbus.com I mean I would not paint and design a bus dedicated to a Vampire series! NOT ME!

Oh By the way there are a few more not me's not on that bus link!

I know a secret... And I'm not telling!!!

2009-05-16T22:51:00.002-07:00

HAHAHA! I know something you don't know and I could not be happier. (Love ya Dawn!!) I got to spend a little over an hour talking to my friend Dawn today. It was so much fun I really wish we lived closer to each other. We talked about kids and baby "E" and other Unnamed blogs and blog writers and STUFF in General. Yea yea I know I cheated on this post but...

On To Soli:
We did her Upper GI and swallow study yesterday. Good news is all her anatomy is there and good. Bad news is after stressing her over not eating and the exam we had to put her NG tube back in. Dr M sent her referral into the peds surgeon and We will be going there next week. The docs say she still needs a G-tube but we are unsure about the fundo.. Well goodnight for now..

HEY DAWN: how about another 2 weeks and this time rules say you can miss 2 posts total?!

Say a Little prayer if you would

2009-05-14T22:28:00.000-07:00

Tomorrow Soli and I have to be at the hospital by 8:30 in the morning. She will be having an Upper GI study and a barium Swallow study. I think they are going to put her under and that is the part that scares me. I have faith and I know she will be ok. But a few extra prayers can't hurt.

Good news though 2 nights ago I pulled her NG tube and she has been taking all her feeds by bottle!! See God does answer prayers! I am hoping she will not need Fundo Surgery or the G-tube but I will know more tomorrow.

Goodnight for now.

I've decided I wanna keep her!

2009-05-14T11:48:00.000-07:00

So you think I can hide her when her mom comes to pick her up and hope she doesn't ask about her.... Nut Yea I knew it wouldn't work either!
MY GRANDDAUGHTER LILY 5 MONS

Wanna Ride our bus??

2009-05-13T14:02:00.001-07:00

Check out our new blog.. Please get on the bus and follow our journey..
www.TheTwilightBus.blogspot.com

Wordless Wednesday - Lily 3 mon & Soli 5 mons

2009-05-13T07:48:00.000-07:00

Heartbroken.. Rest well sweet Kayleigh

2009-05-12T07:18:00.000-07:00

As a fellow mom of a Micro I know all do well that this could have been Soli. Rest well sweet Kayleigh. You are free from your broken body and the 4 walls of the NICU you called home for the past 10.5 months to run and play in Heaven's playground never to feel pain again!

CJ

2009-05-09T22:23:00.001-07:00

My Kids REALLY Love me!!

2009-05-08T13:58:00.000-07:00

AMAZING PHOTOS!!

2009-05-07T13:30:00.000-07:00

I have to let you know about some of the most awesome people! Steph and James of Enchanted Images gave their time and skill to take photos of Soli. They had even offered to come to the hospital when we thought we might lose her. I have to show you their Amazing work and send you in their direction! Their website is http://www.enchantedblog.com/ and if you are ANYWHERE near Roseville, CA you have to get your pictures taken by them! They made us feel so at ease and are two of the kindest people we have ever met! Thank you SO much James and Steph!!

Soli's bracelets and the Bus Fund

2009-05-06T15:45:00.000-07:00

See the side bar to order your bracelet and help us with our bus fund. $5 and Shipping is included. We have kids and Adult sizes.

Wordless Wednesday - Corbin 14 months

2009-05-06T07:43:00.001-07:00

Seeking Bits....?

2009-05-04T16:50:00.000-07:00

I have always thought of myself as a strong woman. Anyone who knows me know I am not someone to give in or give up. When I set my mind to it I can do anything. Or at least that is what I thought. Before.... Before Soli.

Pastor Tim said this Sunday at Church "We seek bits of God rather than all that he is." He was talking about how Many, dare I say most, of us treat God as a vending machine. When we are thirsty we walk up to the vending machine, drop in our money and collect our drink. How many of us can honestly say we have not treated God like this before. Something goes wrong (we are thirsty) We ask God to help us or fix the problem (inserting our money) and expect that he will just grant our wish simply because he asked (getting our drink). And then just like a vending machine that "eats" our money we get irritated, angry, frustrated that we did not get our drink immediately so we bang the side of the machine, yell at the machine and curse the machine.
Sometimes we realize that we forgot a nickle or the quarter dropped out the bottom coin return slot and we once again place our money in seeking that drink. Expecting the immediate gratification.
Often we only come to God in times of need and forget to come to him in good times and often forget to give thanks forgetting that he granted the very things we last asked him for last time.
We do not give ourselves completely to God instead we seek bits of him. I know I do.

I have been having a really tough time with Soli the past week. She is on an NG tube and feeding pump since she was not gaining any weight. Well in the past 4 days she has refused to take a bottle at all. I feel like we are going backwards. When she does start sucking on a bottle she gets about 10ccs down the starts acting like she cannot breathe and like she is in pain.

So many times in the past 5+ months I have asked God to heal her (I put in my money) and I see Soli struggling with so much and it is so overwhelming at times and I just feel like kicking the machine. I have prayed and prayed and prayed yet my drink is not coming out. I know I have not totally given Soli up to God. I am afraid to tell you the truth that he might deem me unworthy and take her back. Why is it so easy to seek bits of God but so hard to accept him for all that he is. I know he knows what is in store for Soli and for all of us. Is this his way of getting me to surrender and to pay for the drink even when I am not thirsty so that when I am I will be able to quench my thirst.

I am trying so hard to attain the trust in God that MckMama has. Maybe that is why I have been drawn to her blog. To learn from her. To see the trust she has and give all of myself to him and to finally take him for all that he is.

Not Me Monday

2009-05-03T21:14:00.001-07:00

Time once again for Not Me Monday (well it IS monday on the East Coast). Created by MckMama . Tell me what you did not do this week.
1. I did not take all 9 kids out to the mall ALONE on Saturday. Not me!
2. I did not come home from church on Sunday and take Soli into my room and fall asleep on the bed thus leaving the others to fend for themselves. Not Me!
3. I did not go all Twilight and cut my hair like Alice Cullen. Not Me! (OK I gave this one away already!)
4. I did not tell my husband that *IF* we ever had another kid I would name it Remesme or Jasper. NOT ME!!
(Calm down mom I can see you picking up the phone to call me, NO we don't plan on anymore kids!)

Ok your turn!

OK he was cute but....You cannot do THAT!!

2009-05-03T14:31:00.000-07:00

Well I think I clarified in a previous post that my life is far from normal. We already attract a lot of attention when I am out and about with all the kids. But nothing prepares me for the Horrified look on the faces of B's victims, I mean Run-ins. B is 13, Well 14 next month but is mentally about a year in a half but she LOOKS like she is 14. I mean at least in her defence she looks Mentally handicapped but somehow I do not think that makes her Victims, I mean those who come into contact with her, feel any better about her recent way of "greeting" people.

B's new form of greeting is to spy her Victim, I mean someone, and walk up to the poor unsuspecting sap and proceed to...well there is no other way to put it but...she feels them up. Yes B seems to have a knack for feeling up those she come in contact with. But Nothing prepares you for the horrified look on her victims, Yes I am going with victim now, faces. They can see she is Mentally handicapped but that can't make them feel any better about getting groped! I cannot even apologize anymore because honestly what can say? She does not seem to care if the person is male or female either. So I guess you could call her an equal opportunity groper?! I am not sure if this new way to greet people is better or worse than her old way (which was to come up to you proceed to give you a bath with her tongue.) I guess for her this new way is much more sanitary? All I can do is gather my children (no easy task in itself) and slink out the door...

Anyone have any ideas?? OK well lunch is calling (yes I KNOW it is 3pm already!) and I have to get the kids to taco bell and everyone is in the bus waiting for me...

Challange with Dawn

2009-05-03T14:23:00.000-07:00

OK well I challanged a friend to write a post everyday for the next 2 weeks in order to jump start her blogging. So... Here goes. (Oh BTW you can go to her blog by clicking on the word friend.)

My Boy who Sparkles

2009-05-02T08:47:00.000-07:00

These feet were made for....walkin'!

2009-05-02T07:38:00.001-07:00

Alice Cullen

2009-05-01T21:52:00.000-07:00

Yes I have fallen into the Twilight craze. I have been debating getting my hair cut for a bit. I have had it long for YEARS. I would say I am most like Alice Cullen, We both have an obsession with shopping!! Well I decided to take the plunge....

It is going to take some getting used to but I think I like it..

Normal? I do not think that word means what you think it means!

2009-04-30T21:31:00.000-07:00

I was writing in response to Mckmama's post today and realized I too am settling into a whole new "normal". This normal is different than the new normal I thought I was getting used to a month ago. Here is what I wrote her;
Normal is relative. I am mom to a Downs child, a bi-polar child, 2 autistic kids, a Pfeiffers (craniofacial) child and now a BPD Lung baby.
Normal is relative. We too are learning our new normal. It consists of 24/7 Oxygen saturation monitoring, Oxygen machines and NG pumps. Oh how I long for the normal I used to have (though by many people's standards it was far from normal)

Each child always brings new challenges and unless someone has, like you and I, Sat endless hours over weeks and months with your child in a Hospital room watching them fight for their lives, they cannot understand our new respect for "normal".

The normal we long for consists of no machines to monitor or children's lives and no needing to be ready at a moments notice to live in a hospital.
The normal we want consists of children who don't listen and get into our stuff and sneak a second dessert or stuff an entire roll in their mouths!
The normal we long for does not have to carry an extra diaper bag full of medical equipment.

The good news is you will get used to it. This new normal will one day be routine and people will stare in awe as you maneuver everything and everyone and you will forget the old normal until someone points out that they "could never do all that you do" and then you will remember the old normal and realize that the new normal is not so bad and you realize that it COULD be worse. You could go back to that old normal without one of your children and you realize that the new normal with your child is MUCH better than the old normal without them...

Those of us navigating the New normal will navigate it together and be there for each other while we define our normal.

I am struggling with my new normal. My normal has been flopped around and honestly I thought my normal before was hard but this new normal is just starting to sink in. It is sooo much harder. I know or at least I hope that one day this new normal will be routine and old and I long for that day.
But now I am getting used to not feeding my baby from a bottle but from a pump and getting use to the fact that she may never be free from wires and tubes and I may never get to leave the house without that bag of medical equipment and I know that SOMEDAY it will be normal but now I wonder why. Now this new normal staring at me scares me. I do not know what to expect and I just long to be my old normal again. I have so many questions and feelings and thoughts and I don't know how to process everything. Do I give up on one child to allow more time for the others? What is this new normal? What exactly does this new normal have in store for me?
Today at mom's we were told that parenting is like being a Gardner, most of our time is spent on our knees. Perhaps it is time to hit my knees and find out where I am supposed to go and to ask for help and guidance and acceptance of this new normal.

Wordless Wednesday

2009-04-29T08:04:00.001-07:00

Not Me Monday!

2009-04-27T12:40:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama.

Ok Here Goes, You need to write about all the things you did NOT do this week..

1. I did NOT buy a short bus in which to haul my children around in and my children do NOT love said bus. I also did NOT buy said bus without my husband's knowledge. Nope Not Me!

2. I did NOT forget to turn on my Daughter's portable oxygen tank when Tom, her and I went out to dinner. (and she was satting at 95 when I noticed that thing I did NOT do several hours later!) Nope again Not Me!

3. I did NOT forget to cap Soli's NG tube after a feeding and spill it on me. Not Me!

So what did you NOT do this week??

Slightly Depressed

2009-04-23T17:04:00.000-07:00

Orange for Stellan (a bit late but still)

We had another Pediatrician appointment today. Soli has not gained even an ounce since Tuesday. So I requested her NG tube be put back in. We see the GI dr tomorrow. I am so scared he is going to label her FFT (Failure to Thrive) She is only 6 lbs 11 ozs and her adjusted age is 1 month today.

NEWSFLASH: I am not supermom. I do not know it all. I am scared.

I cannot do any of the "normal" baby things with her. I want to pick her up and walk around with her but I can't in fact I cant hold her well at all between the O2 the pulse ox monitor and the NG tube. Forget about walking around with her. Every time I try to feed her she gags and acts like she is going to throw up. She is not gaining weight so I know I must be doing something wrong. I so not like it when I am not in charge. I do not like when things are out of my control. I HATE not knowing how to "make it better." I am stressed out about her eating and then stressed out about pumping too. I am so near quitting and just giving formula I mean obviously my milk must not be very good if she is not getting bigger on it. Maybe she would do better on formula. Maybe I would be less stressed about having to produce enough for her. But then it is exactly what I did not want to do. I wanted to nurse her for at least the first year and maybe more. But nothing is going according to plan is it? Thing is, This IS God's plan. Now I have to discover why? So If someone could clue me in so we can get past this then I am all ears...

Here are a few shirts I had made for Soli.... Oh and me!

Karma or God's Wisdom

2009-04-22T15:37:00.001-07:00

This Sat I will walk in a walk I had participated in for years when I was little. Back then it was The March of Dimes Walk America. Little did I know 20+ years ago when I was walking with my dad that one day I would participate in the same walk years later in my daughter's name. How could I have known that money I helped raise back when I was 7, 8, 9, 10 or so would come around to help save one of my own children? I could never have imagined the life that was in store for me, I just knew, even at 7 years old, that those tiny babies needed my help. So I walked, I bugged my neighbors for pledges and walked the long walk. Granted I usually only made it to the first maybe 2nd Checkpoint but I was proud.
Now years later my child has benefited from my walking as have MANY other babies. I never participated thinking this may benefit ME someday just that I knew my walking would help save a baby somewhere.
Karma? Maybe. God's wisdom? I think so. These unknown babies were so important to me back then. God knew why because he had in store for me to one day be the mommy to one of these littlest Angels. He was preparing me I believe, for my future role. None my friends walked I was alone with my dad and a sea of strangers and I could not have been happier. Now on Saturday I will once again Join the sea of strangers in Sacramento to walk the walk. Only this year I will not be alone. I will walk proudly as the mommy to my own miracle. I will walk with my head held high, proud as ever carrying my miracle with the knowledge that my walking is helping to save someone else's Angel. And as I walk I will hold tightly and thank God that my prayers have been answered and Soli is with us. I will also hold her a bit tighter as I see all the teams honoring the Angels who were not as fortunate as Soli and left this world all too soon. But as long as there are babies like Soli I will be out there walking. One day we will be able to prevent Premature birth and all babies will be born healthy.

Soli PICU day 4.

2009-04-15T18:12:00.000-07:00

Here I sit 4 days into the latest hospital stay for Soli. At first Dr's thought that she had aspiration pneumonia. Now they are saying they think she has BPD (her preemie lung disease) and some kind of winter virus on top of it. She is on 2 liters of O2 @45% . She is not tolerating her feeds well right now either. She is also very wheezy. She is not tolerating the volume of feeds that they want her to take so after they feed her she is throwing up. I need to talk to the Dr about upping the calories and lowering the amount she has to take in.

She has been having alot of Bradys (heartrate drops) she has had so many we have once again moved rooms. This time it was a move to a private room in the Intensive Care side of the PICU.

Well We just finished a bottle she ate 50ccs in about 8 min. I think the 50 is her limit and she seems to be holding it down now.I am going to fortify her 50ccs myself and see how she does.

I have been sitting here thinking about what it is I am supposed to be learning from this. From Soli. What is it that God is trying to teach me? I think He is trying to tell me to slow down.
There is so much going on in my life right now. Tom and Cheryl are clashing, Well Cheryl is clashing with Everyone. She has not gotten the memo that she is not the boss and she needs to figure out that she is a kid too. I know this is my fault because I have asked so much of her in her life. I have allowed her to take on more responsibility. She just does not seem happy lately. She is only 11 it can't possibally be the teen years yet can it??

I am feeling the need to change things. Some good, some not so good but changes that would overall be better. I can't say what all these changes are but some things are spending more time with the kids DOING things. Also Somethin I think Tom and I need to work on is our anger. We yell ALOT. Well actually sinceha came home from Iraq Tom is... different. He is more easily aggrivated and things that before would not phase him just really aggrivates him now. Small things make him angry and I honestly do not think he enjoys doing things as a family anymore. I do know that I handle the kids better, I have more patients than he does. So one thing we need to do it work on letting the little things go.
Another thing I am going to work on it keeping the house better. I need to get as schedule down and stick to it.

But for now I am just going to trust in God and trust that he has a bigger plan for Soli and that she will get better and this hospital stay, like her NICU stay, will be a memory soon. I have plenty of time lately to think. So for now that is what I am going to do. Sit here and try to figure out what God wants from this, What he wants me to take from this. I do know that so far Soli has taught me how much I miss my other kids when I am away from them. I am also getting a greater appreciation for Tom and his helping me out by allowing me to be with Soli. Though I must say we do not get much tome together and I know that is taking a toll on us. But I know we will get through it..

I'm beginning to hate Holidays

2009-04-12T23:14:00.000-07:00

Well, shortly after my last post Soli was rushed to Sutter via ambulance in respiratory distress. She turned blue and her O2 sates dropped to 61. I turned her O2 up to 2 Liters and she did not come up like she was supposed to. She was still blue so I called 911. The paramedic bumped her up to 2.5 L and got out the in-tubation supplies. Thank God she held her sats up long enough to get to the Hospital.
Once there she dropped again and she was given a breathing treatment. I was so relieved to look up and see Margie standing in tha hallway. I never wanted to hug someone more! She came in and they tried to get an IV and even Margie tried but the equipment in the ER is not set for a Preemie. Soli's Sats improved and Margie had to go give report but she said she would send someone down from the NICU to get an IV in her. After the ER nurses tried 5 more times and then the Nurse from NICU came down and after her 2nd try got a line in her foot. Poor baby was so out of it she did not even cry until the last stick.
So now it is 11:44pm and we are still waiting for a room in the PICU. I am beyond exhausted.

I will keep you all updated.. Please pray she is ok and we don't have to stay here long..

Happy Easter!

2009-04-12T17:29:00.000-07:00

Wanted to drop in & Say Happy East to everyone!

New Laptop!!

2009-04-10T19:29:00.000-07:00

ok so I think I am going to like this new laptop. Yes I splurged and got myself a new HP Touch Smart laptop. It allows me to actually write and then types what I write. This has got to be the coolest thing! - Well everyone here is doing great. Mac's appointment in SFO went great. She does not have to go back-till April 2011! Woo Hoo. Soli is nearly 7 pounds now. We go back to the lung Dr on Monday. Soli Saw the Heart Dr on Thursday and she is boarding high BP but she does not have to go back for 4 months. Things are a bit stressful lately. I find myself wondering no, wanting to simplify my life lately. I have been going thru stuff in the house and purging things I do not need. I have too much stuff but I am the kind of person who can't get rid of things I might be able to use later. I am slowly getting over that though.

Why We walk with March of Dimes

2009-04-01T13:21:00.000-07:00

MacKenzie Born 6 weeks too soon

Riley Born 5 weeks too soon

Kassiah Born 7 weeks too soon

Caden Born 7 weeks too soon

Corbin Born 6 weeks too soon
Solange Born 15 weeks too soon

They are why we walk.... and will continue to walk for years to come.

Ramblings and Photos

2009-03-30T14:01:00.000-07:00

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

2009-03-25T16:16:00.000-07:00

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!

2009-03-25T14:17:00.000-07:00

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

2009-03-25T12:57:00.001-07:00

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

2009-03-23T15:37:00.000-07:00

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!

2009-03-22T09:55:00.000-07:00

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!

2009-03-20T14:21:00.000-07:00

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

2009-03-18T17:55:00.001-07:00

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!!

2009-03-10T22:12:00.000-07:00

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.....

2009-03-06T23:58:00.001-08:00

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!

2009-03-01T22:12:00.001-08:00

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!!

Time goes by

2009-02-28T09:52:00.000-08:00

What a difference 11 weeks make! It is hard to believe that in the past 11 weeks we have gone from this:

To this:

It has been the hardest 11 weeks of my life! I can honsetlysay that without all of your support I think I would have gone insane. I know I have not been very active on my due date club boards and I know I have not been a very good Due Date Buddy, Sorry Sandra. Honestly it is hard for me to go on the board. It is hard to read about everyone's pregnancy and the births of the babies and them coming home. I am jealous of the belly pictures and everyone being tired of being pregnant. So I have to appologize to my ladies on BZ for not being a very good "friend".

The good news is I can see a light at the end of the tunnel now. Soli's nurse has said she thinks Soli will be home in 10 days!

10 days! After all this time I have 10 days to get ready for her to come home. I guess I am now going into my "Nesting" phase. I feel the need to clean everything! Speaking of cleaning I need to get to it. I Only have 9 more days!!

BIG UPDATES

2009-02-23T08:30:00.000-08:00

Well I have been slacking lately. Sorry. I am trying to find the delicate balance between all the kids and where I need to be. I need a duplicator so I can be everywhere at once. Plus this week has been trying. OK the updates: Angel Girl has been on High Humidity Nasal Cannula since last Tuesday and doing great! Yes she was off bubbles when I posted my last post. She is now 5 pounds as of yesterday. After our fight with her Dr, She is nippling and ate the entire bottle at both nipplings yesterday! She is still on 3L of O2 at 35% but we are not even trying to wean that down yet. The good news is that the Dr said that if she gets all her feeds down that he will send her home on O2 if that is all that is keeping her there. I think I am just getting tired of the NICU. It has been 10 1/2 weeks and I just want Soli to be mine and not "property of Sutter Memorial" That is what my last post was referring to. I have been feeling more this week like they think she is theirs not mine and I was growing increasingly frustrated. We did have a meeting with the NICU director and her Dr and have come up with a care plan for her and so far so good. She is being Cloth diapered and is nippling 2 times a day. By Tue or wed we should be nippling every other feeding and a few days after that we will go to nippling as tolerated. I can finally see an end to this nightmarish NICU stay.

I thought her last name was Silva Not Sutter!

2009-02-19T11:16:00.000-08:00

I hate the fact that just because your child is in the hospital that we as parents get treated as though they are not ours but actually belong to the hospital. I swear the name on the bands, nameplate and Birth Certificate was Silva NOT Sutter. I guess I will have to go double check. I hate the fact that they do whatever they want whenever they want with my child WITHOUT my consent. I have been looking at transferring her to a different hospital but Tricare says they won't pay unless it is medically necessary. They do not care if I am not satisfied with the quality of care she is receiving at the current hospital. GRRRRR I feel like she is being held hostage! she is 35 1/2 weeks and they are not nippling her!!!!! I am so beyond pissed at the incompetence shown in this NICU over the past 2 weeks! All they are doing is buying the hospital more $$ by going as slow as they are with her. I just want to scream! Do you think they will get the picture if I cross out Silva on the sign on her bed and write Sutter?? I almost want to tell them that since they seem to think she is theirs, to just call me when they decide they do not want her anymore.

I'm a Big Girl Now!

2009-02-15T08:09:00.000-08:00

A Quick peek at my Angel's face after her bath. Look at all that hair!! She is Beautiful!

I am plesantly suprised to let you all know that late last night, weighing in at 4lbs 8 ozs, Miss Soli moved to a big girl crib!
Ok let me back up a bit. I went in the other day when they called to tell me they re-intubated her and noone could tell my why she was intubated except that she had a new nurse and a student nurse at the time. Well I told them they had 2 days to figure it out, prove to me she needed to be intubated or extubate her. Well they figured out she has reflux and that she refluxed causing her sats to drop. Needless to say they put her back on bubbles. She is now in D room because a week ago they exposed room D and B to a baby with RSV. So she got her Synergist shot and has tested negative for RSV.

Other news, Corbin turns 1 on Sat and I am busy planning his party. I will go see Soli this morning and I will bring back pictures of her big girl bed...

Tiny Crocs and 9 Weeks old

2009-02-13T08:06:00.000-08:00

OK so a couple of weeks back my mom gave me these keychains of Mini Crocs. She dug through the whole barrel to find a right and a left shoe. So I took them in the other day and Soli wore her first pair of "shoes".

I think she likes them.

Soli turned 9 weeks old last night and here is her Cow picture. She weighs 4 lbs 3 ozs in it..

Despite being on the Vent, Margie let me hold her yesterday. When I picked her up her TCM was at 90 and sats at 80%. While I was holding her her TCM dropped to 68 and she was 90-100%. Now if I could just sit here 24/7 and Margie was on 24/7 we would be home in no time!

My Angel's Angel, a granddaughter and 4 POUNDS!!!

2009-02-12T21:48:00.000-08:00

I was walking in Target and found this on the new release shelves! LOL! I had to take a pic because I though it was funny!

I wanted to introduce you to who I believe to be Soli's Angel.

Margie is Soli's primary nurse and second mom. She is God sent. I know she was placed in our lives and honestly I do not know how I would have survived this long if she hadn't been. She talks to Soli as though she is going to talk back and Soli responds to her amazingly! She is not just some nurse taking care of Soli, she is a Nurse who Lovingly cares for and in my absence mothers her. She responds to 2 people when they call her name. Me and Margie. I do not know how to thank her enough for the care that she gives my daughter. She truly cares about her and it shows everytime she is near her. I am not sure if she follows this blog but I do want to say how amazing she is and to thank her with all my heart. I know Soli feel the love and warmth that radiates from Margie and she has gotten this far because of Margie. She is Soli's Angel!

This week also brought us a new Grandbaby!! Lily Lorene was born 2/9/09 at 3 pm 6 lbs even and 19" long. Yes she out weighs her older aunt!! Tom was able to be there when she was born and though not able to attend I did hear her be born. Almost as good. This Sunday she will be coming to visit Memaw and Papa house for the first time! I cannot wait! Here she is:

Here is the proud new Papa Silva!

Oh and on another side note Miss Soli hit 4 pounds yesterday! She is now 9 weeks old!

This songs says it all

2009-02-11T08:34:00.000-08:00

I added this song to my myspace several weeks back. I have heard it nearly a hundred times yet today when it played on my page I lost it. This is me right now Word for word. I feel like I am in the storm and I am trying to hear him above it. I want to hear him tell me it will all be ok but I can hardly hear him....

"Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

On the Vent Yet Again!

2009-02-11T06:59:00.000-08:00

I thought we finally turned the corner! But I was awaken at 2:41 am with the phone call telling me Soli has yet again been put on the vent. I am not understanding this since when Tom and I left the hospital at 6 pm she was only on 25% O2 satting well and there was talk once again of a nasal canula in a few days. GAD I am not sure how much more I can stand without going insane! They said she is on very low settings on the vent but still on the vent. Tom cancelled his Army trip and after the Ortho appt for the girls I will be going in to find out what the hell happened...

SO Sorry. My update and LOTS of PICS!!

2009-02-08T11:40:00.000-08:00

Wow the past week has flown by. So much to do and not enough hours in the day to do them. This week has been a good one. Soli is still on Bubbles at 30% O2. She is up to 3 pounds 11 ounces! as soon as she can kick the bubbles she will be in a big girl bed! I cannot wait to hold her and have her face resting on my chest and smell her and not the bubbles!!

This week brough us Good News on the friend front as well. We are all relieved to hear our friend Mary is Cancer Free! We have been praying for her and finally got a Great answer to all of our prayers! Hopefull she can breathe a bit easier and I hope she realizes how much everyone missed her while she was gone.

Also My Cousin is pregnant!! Yea! I am so excited for her! Here is her little bean due in September

This week also brough Soli new visitors. As you know the entire staff at Chick-fil-a in Elk grove has become an extended family to us. This week 2 members of our new family came to visit and hold our little Angel. Kathi and Melissa trecked with me to the hospital and visited with Soli, they even brought the nurses a treat! Oh yea I am the favorate parent in the ward now!!! Well here are some pictures..

The Sweetest Gift!

2009-01-30T14:42:00.000-08:00

As of last night Angel girl weighed 3 pounds 4 ozs! Her primary nurse Margie got her a headband and she was sooo adorable in it!

Here is her 7 week picture with her cow! She is getting sooooo big now!

As for the sweetest gift....

When I came in this morning she was back on Bubbles and was dressed!! They are going to move her in the next few days to a crib!!!!!!!!!! I can bring clothes in now for her! This is the best birthday gift I could have hoped for short of her coming home!

Weaning the vent

2009-01-27T09:37:00.000-08:00

Sorry I have not updated in a few days it has been crazy to say the least. It is hard to blog when all 8 other kids are home. We are patiently waiting for 2 babies to be born in this family. My Niece is being induced today and sometime later we will welcome Josephine May into the family. Meghan is due 2-2 but I think Lily is waiting to be born on grandmas birthday. Yes Sunday 2/1 is my birthday. Wow 32 and I feel so old already.

Soli is doing well. she is floating around the 3 lb mark. As of yesterday her Co2 levals were finally in the 40s so they are slowly weaning down the vent. She has been at the vents highest settings (60 Breaths per minute) for over a week and we were afraid that if her Co2 levals did not come down she might have to go on the jet vent. The jet vent is a high frequency vent. I guess she overheard me and Margie talking about that and decided to start behaving. As of last ishe was down to 51 RPM and 45% O2.

The 3 POUND MARK!!!!!

2009-01-24T13:58:00.000-08:00

My angel has DOUBLED her birth weight!! She is getting so big. I was amazed looking at her hands last night. They are so big compared to the size they were when she was born! She is filling out and is so Beautiful! She is starting to look like Corbin. Her weight last night was 3 lbs 1 oz. Making it to the 3 lb mark is a sigh of relief. A small glimmer in the bad week we have had.

Here is her 6 week Chick-a-lay pic:

Yesterday I was doing Diaper laundry and brought all the clean diapers out to the livingroom to fold and Corbin was "helping" me. I left the room for a minute and he decided he wanted to be IN the Fluff rather than helping put it away

Here is my boy in some Jesus Fluff!

On the vent...AGAIN

2009-01-23T15:58:00.000-08:00

grrrrrrrrrr. I hate this! Soli is back on the vent... i just want to scream! Would it really hurt to make some progress and NOT step back?! Seriously God I am not sure how much more of this I can handle! A break that is all I am asking for. For Me and for Soli.

FINALLY... Some good news!

2009-01-23T12:53:00.000-08:00

Well apparently last night about 9 pm my Angel decided she no longer wanted the vent's assistance so she ex-tubated herself! Now she is on Bubbles and is doing very well. They are keeping a very close eye on her as she was still on rather high settings on the vent. As of now she is sating at about 95% and is on 50% O2. She is Bubbling away. She is actually doing better than she was on the vent. I am so relieved! Finally some good news after a bad week. I cannot wait to go see her today!

I am going to link you to one of my blog follower's blog that he sent me yesterday. He wrote about Soli and Tom and I feel so blessed that this man is praying for our daughter all the way in INDIA! His daughter and ours are a month apart and we are both blogging for our children though in different ways... If you have the time please read it and comment him. He writes so well and it will be worth the read!
http://myheartfeltmusings.blogspot.com/

I had a dream...

2009-01-21T20:56:00.000-08:00

OK I know 2 posts in one day but I was in the shower and I was reviewing my dream from last night.
In my dream I was in a room and I looked up and saw a baby in Soli's spot. (In the NICU your child can be moved spots daily) The baby in the bed was lying on it's tummy looking up at me with huge blue eyes. I looked around for Soli and was upset they had moved her and I did not know where she was. The baby in the bed looked like it was going to fall out of the bed so I walked over to check it and saw the name on the bed. Silva, Solange Lea. It was Soli, no machines, no oxygen just a normal, beautiful, healthy baby girl. Then I woke up. It was a wonderful dream! I have tried to think about what it means. Is it just my desire for her to come off the vent and get healthy? OR was it showing me what was to come? Either way I have held on to that dream all day.

I have been sick and I was not able to go see her today and I am a bit depressed about that but I keep calling to check on her. I hope each time that they will tell me she is doing better but I get the same response, she is stable and is the same. She is up to 2 lbs 13 ozs though.

Wordless Wednesday.. well almost wordless.

2009-01-21T18:34:00.000-08:00

Meghan..37 weeks

We had to update our family on our van cause people are missing. So here is our old family. I will take a pic of our new family as I cannot seem to find one right now.

The Answer to the Breathing problem

2009-01-18T20:45:00.000-08:00

Well it seems as though Miss Angel has a Staph infection in her lungs. That is what caused her to have to be re-intubated. She is now on 3 antibiotics and should be feeling better in 5-10 days. They are fairly sure once she is feeling better that she will be able to come off the vent. Here is a picture of her on Friday and then today..

Intubated....AGAIN!

2009-01-16T07:44:00.000-08:00

Yesterday at 11:15am I called to check on my Angel and was told she was doing great. She had a bath and handled it very well. Her weight was still 2 lbs 5 ozs and was on 35% O2. Imagine my suprise to walk in at 4:45pm and find her Bubbles gone and not for the better. Soli had to be reintubated yesterday. They are not sure what is wrong. They suspect an infection and have started antibiotics. Preliminary bloodwork says no infection. Best case senerio is that she has refluxed and asperated some milk into her lungs. Luckily when she started going downhill the dr was there assessing her and made the decision to intubate her rather quickly. She seems to be doing better right now that she is back on the vent. She is getiing 60 Breaths per minute by the vent and is on 60% or higher O2 and as of last night she was making no attempts to iniciate her own breaths. She was allowing to machine to do it all for her. I knew something was wrong, there was no fight in her. They moved her across the room because theyhad a transpot coming in. Talk about holding my breath! I held mine the entire move because they had to disconnect the Vent and manually bag her for the move.

Morning update: Soli has been weaned a bit on the vent settings and is at 50% O2. She is tolorating her feeds which are at 22.5ml every 3 hours by NG tube. The good news is that thru all of this she has gained 6 OZS in the past 24 hours! Little Miss Soli is 2 lbs 11 ozs! Yea she shocked her nurse too (who weighed her several times to make sure it was not a mistake.)

This is shocking to me as I seemed to have fallen into a false sence of security in the past week. Everything was going great and we were looking at coming off the bubbles. This is not what we had in mind when we said she would come off the bubbles. So a step back yesterday and another realization of how fragile she is and how quickly things can change.

More and more I feel as though I am supposed to submit and tell God that I give her up to him and trust in him that he knows what is right. But the truth is I am afraid. I am afraid that if I tell him that she is his that he will take her from us. But I am afraid at the same time that if I do not he will take her for not giving her to him and trusting his will. I guess in a way I feel I am in a no-win situation. So instead I keep praying asking him to tell me what he wants me to do. I think I know but am not listening because it is not what I want to hear.

I am lost. My inbox send me the should be happy you are X weeks pregnant. It tells me all the things that should be going on with me and my baby. I used to have 3 of them coming to my inbox and I changed one of them one day to reflect her birth. Yesterday I got the Your child is 5 weeks old email. It tells me all the things my 5 week old should be doing. I am stuck, not sure where I belong. I am supposed to be 30 weeks pregnant yet I am the mother of a 5 week old. There should be a mix one for parents of preemies because the pregnancy one only throws in my face what my body should be doing and the 5 weeks one only shows me what I am missing not having a "normal" baby. GAAAD I should just unsubscribe to all of them....

Ok So it is not Wednesday but...

2009-01-13T13:47:00.000-08:00

I found the camera cord. ENJOY!!

Say a prayer for Soli's roommate's family (Child Death mentioned)

2009-01-12T21:56:00.003-08:00

I am sad to announce that Soli's roommate Baby V(a 23/24 weeker) lost his fight today. For the past week I have watched his beautiful baby boy fight to survive. When I walked in tonight the room had been cleared of everyone except Soli and 2 other very sick little ones and his space was empty. After talking to Kasen's mom (Soli's boyfriend and buddy for the past nearly 5 weeks who was moved when things started going downhill with baby V) I learned that the tiny boy on the left of Soli did not make it.

If you could, would you please say a prayer for his family as they prepare to say goodbye to their son for the very last time.

I saw him last night and he looked good but sometime after I left at about 10:30 pm he coded for the first time. His family (from what I was told) was able to come in to see him and had the chaplin come in and sometime this afternoon he lost his battle.
The loss is all to real to me right now knowing it is a day to day struggleand we never know. I mean the other day the nurses were showing his parents Soli's bubbles and telling him that soon he would move on to bubble cpap and now his space is empty. So say a prayer and hug you kids a bit tighter... Tomorrow is never promised, all we have is here and now...

Happy 1 month birthday baby girl.

2009-01-12T08:58:00.001-08:00

One month ago last night at 11:53 pm my world changed. Last night my Angel weighed in at 2 lbs 5 ozs. She has been having more frequent Bradys lately but I have been assured this is just a immature / prematurity thing. I am going to save my photos for a wordless wednesday so come back on Wed for a Photo bonanza!

Long overdue update

2009-01-10T18:02:00.000-08:00

Soli is doing well. She is on Bubble CPAP on 35% Oxygen. I am hoping she will be off the bubbles soon so I can finally hold her without having to fight the tubes. She is tollorating her feeds. She is up to 20MLs over 2 hours and then one hour off and then 20MLs over 2 hours and one hour off all day. She is such a trooper. She is starting to fill out. She is finally getting butt cheeks!! LOL. As soon as I can find my camera cord I will download some recent photos.

Mail info

2009-01-07T11:48:00.000-08:00

OK so many people have asked and so In the comments of this post I will put our mailing address.
Also since others have asked I will list all the kids here.

On another note, our grandbaby is due in 3 weeks. I can't wait. I am excited for her arrival and I am hoping Soli will be able to come home shortly after.
Soli is holing at 2 lbs and is still on the bubbles but I have been able to kangaroo her for the past 2 days. It feels so good to hold her and feel her move.

No more TPN, No IVs and Fluff!!

2009-01-06T08:32:00.000-08:00

Sunday night Soli's nurse took off her TPN and I am so proud to say she no longer has any IVs! This being said her Broviac is also being taken out. Well No TPN = no weighing diapers. No weighing diapers = cloth time!!! Here is my angel in her first fluff custom made for her by Nanas Bottoms!

This movie pretty much sums up life...

2009-01-04T23:33:00.000-08:00

I stole it from a fellow blogger but it is very good. Just goes to show you that you never know how one small thing that you do will affect someone else! Enjoy!

2 POUNDS!!!!!

2009-01-04T12:12:00.000-08:00

Soli weighed in at, get this, 2LBS last night!!! This is the magical mark so we have been told. It should be gradual gain from here. She is on Bubbles and eating 4MLs and hour and tolorating it. TPN is going down because she is eating well. I even got to Kangaroo her last night and her O2 stats were so good the whole time that they turned down her O2 to 38!

Hey anyone know how to crochet or knit? I am looking for blankets for her so let me know and how much you want so I can start getting her some....

The Wristband

2009-01-03T10:52:00.000-08:00

Many of you who are parents have seen this wristband, or one like it. This is the wristband the hospital puts on you when you have a baby. The one you wear for a day or two and then as you are leaving with your baby the nurses check against your baby's and then cut them off both of you and in a sense set you free. To many of you this is a wristband you wear for a day and then put in the baby book. For those of us with babies in the NICU it is much more than that.

You see when we are pregnant people see the belly and ask you about the baby and you gush with pride as you tell them what you are having, the baby's name and when your due ect. After you have your baby you have a cute little bundle that everyone gushes over and asks you about acknowledging you are a new mother. For those of us with NICU babies this band is all that identifies us to the rest of the public as new mothers. It is our marker, our acknowledgement. We no longer have the baby belly nor do we have a cute little baby to carry around. We have a plastic band with our baby's birth date, last name, time and sex. Many of us our bands are weathered from constant hand washing, cracked from weeks and months of wear and barely legible. But we wear it with pride and are proud when someone sees it and asks if we just had a baby. To us there is an emotional attachment to this little plastic band.

A new mother gets a ride to the car in a wheelchair and help into her car. A NICU mother is handed is handed a NICU Visitor's tag, checks on her baby and trudges to the car, alone. No wheelchair, no identifiers that she is indeed, a new mother too. A NICU mom is anxious for the day that she too can take off her weathered, faded band, though her baby's is long gone or never fit them in the first place and is set free to begin a "normal" life. One that includes getting up and cuddling her baby and not getting up and trekking into the hospital.

Until then we wear our weathered bands with pride because they represent the baby we cannot take everywhere with us.