Wednesday, November 30, 2011

Update from Kennys PICU/hospital stay...*sigh*

Wish I could sleep. I'm at home now from a very long and scary day with Kenny. After many breathing treatments and being on oxygen, his was pulse oxing in the low 90's all day...on top of wheezing. They even tried a vent vest (a vest that is uses to break up mucus in the lungs) because his lungs are just not getting better. I've got a couple sick kids here, laundry and dishes. When I left the hospital, I had to pry a sleeping angel from my arm that he was hugging. He was pulse ox-ing at 87 so the nurse had to up his oxygen even more... I called to see if Kenny's stats went up after I left and...well...he just got done puking...everything...everywhere. So he didn't like the bath he got from his nurse and they are giving him zofran and pepcid and holding off on his feeds for a few hours....if this doesn't work, I'm afraid that tomorrow will be an iv and another chest x-ray. Pleeeease keep him in your prayers. I'm so worried about him on top of feeling helpless and neglectful to the other kids(because of being at the hospital all day with Kenny). Also say a little prayer that I can get through all of this. I am so afraid of losing my little guy. Being a grown up sucks.

D@mn extreme prematurity!

I thought we were out of the woods, I mean...four and a half years later, I thought we wouldn't have to worry about too much...boy was I wrong! I do know that when a preemie gets sick, it happens hard and fast, so Monday when he was up all night long wheezing and had a fever, I knew he had to get to the hospital. We get there and the "doctor" that took care of Kenny heard he was wheezing...his pulse ox was 93 as well so they gave him a breathing treatment, still wheezing...and sent him home with prescriptions that couldn't be filled because of something written wrong on them. Fast forward to yesterday morning when he woke up and just looked very sickly. After me being up all night with breathing treatments and Tylenol/Motrin to keep his fever not to cause a seizure...the wheeze was still there. I called and they got him right in for a chest x-ray and office visit. In the office, he was pulse ox-ing the very low 90's...when the doctor listened to his lungs, he wasn't moving any air at all. At that time, they ordered back to back to back albuterol treatments...7 total and he was still stating very low and having a hard time breathing. They decided to admit him to the pediatric intensive care unit where they can keep a better eye on his lungs. He, at that point, was put on 2 liters of oxygen...and he was STILL pulse ox-ing in the low to mid 90's. The flood of memories and emotions hit me like a Why? After all of the struggles he has been through...why does he have to battle massive lung issues that could kill him. I lost nick to bad lungs and I really thought we were out of the woods with Kenny...but I guess this will always be an issue.
Today he has been sleeping, much more than yesterday...and I am sitting here so mad at the fact that the doctors on Monday, didn't listen to me...his mom...who knows her son. And also mad at prematurity!
It has robbed me of my twins, it has robbed my Kenny of a normal childhood and it has robbed my emotional state and way of looking at life.
Please keep the prayers coming..he is not out of the woods.

Monday, November 21, 2011

Tales of a pre-lit nightmare!

ACK! Yes, I did just say, "ack"! This time of year is my all time favorite. From Halloween to New Years Day, I love every bit of the holiday season. I started off this season way back in October, listening to Christmas music and burning fall candles...and now...more Christmas music (its easier to find now), cinnamon and holly scented candles, lights, lights and more lights...and decorating the house for Christmas...Cue the music....dun dun dun...

A few years back, we bought a pre-lit Christmas tree. It was perfect in the store. It looked so was full, had tons of beautiful white lights on it and it even had the pine cones to make it look even more real. It was love at first sight. I much better could it be? I would never again have to string lights on a tree. It was all done so I could spend more time with other, more important was perfect for us.

That is...until the following year when the whole middle section of lights went out. I called the place I got the tree from, and after a long day of fighting on the phone, I ended up having them replace the tree for me. Score 1 for Michele!

That is....until the following year....

Yes, last year was another headache from heck with the tree. Again, there was a whole section of lights out. Somehow, I got it working...and the areas that I couldn't get lit, I added my own lights. It was more hassle than I bargained for. Who has time to mess with burned out lights or fuses when you have 7 kids...especially one who has special needs...not me.

So then we come to this year...Like years past, I get so excited to put the tree up that I made Tony drag up the monster of a box, that looked like its been through war after was a pain, but a good pain. As we were struggling with the box on the basement steps, we noticed that it didn't escape the mold and mildew that took over our basement from the long wet spring and summer we had. It stunk so bad that we had to unload the tree from the box right on the steps. I thought to myself that it was going to be alright...praying all the while that the smell didn't get to the tree itself. So we finally got the last of the tree into the living room where I was going to perform my Christmas magic on was going to be easy this year.

As I got the first layer up I was getting excited that maybe his year...just maybe...the tree would go up without a hitch...

First layer, up. Now for layer number 2. Put it on top of the first layer...plugged it in...aaaand...all but one section lit. OK...looking at the problem....the bulbs were all burnt out. So off to the specialty store where I bought the tree from...because, of course you can only use THEIR replacement bulbs in THEIR trees. When it was said and done, we spent $30 on bulbs. Because of the stress from the kids screaming and the stupid tree, I had one heck of a headache by the time we left the store. So putting the rest of the tree up would have to wait overnight til Saturday so I had time to get rid of the headache that was taking over my brain.

Saturday morning came and I was feeling much better. Nothing better than a good nights sleep to clear the mind! I started right away with the exchange of bad bulbs to good on the strand that was darkening my Christmas spirit! With each bulb change, my outlook started to grow wasn't going on! Finally, the last new bulb in place and still nothing! GRRRR! OK...think, think....maybe the fuse was blown. So I put new fuses in...and still nothing. I got so upset that I took scissors to that one line of lights, I mean, It was only three branches and did have an extra strand of white lights from last year that I never used on the garlands for the outside. It would work...I was going to make it work! Took some time unraveling the branches, but I did it...and it looked good with the new lights on. Finally! I can start to get excited again. I reached down and grabbed the third layer of the tree, placed it on the restrung layer, and plugged it in.


At this point, I just walked away from the whole mess. I didn't want to do something that I would regret one day. Then, after looking around and listening to all the chaos that was my home (the kids fighting, Kenny screaming, toys thrown everywhere, pillows and blankets from the kids sleepover on the couch and floor), I took matters into my own hands...

The scissors came out once more and I made a phone call to Tony (hoping he'd talk me out of the irrational move I was about to make)....the phone call went something like this: Me: Hi ,Tony. The lights don't work and I'm cutting all of them out of the whole tree. OK. Love you. Bye!

And the stress relief was in progress! I cut, and unraveled...unraveled and cut. And finally....on Sunday morning, It was done!

Never EVER buy a pre-lit tree...ever! What a waste of time, but I do feel wonderful for taking matters into my own hands. I may just have to give the store their lights back in a garbage bag with a note that thanks them for showing me that buying a pre-lit tree and spending a lot of money on a tree (that is supposed to last years and years)...isn't worth it! They suck you into thinking that pre-lit is the way to go...yeah...down the toilet!

Think of this as a small public service announcement ;)

Now to get to the store and buy colored lights and twinkle ones for a multi-colored tree this year! Oh, and the moldy/mildew smell? Yes, the tree is a little stinky, but nothing that ScentSicles won't take care of.

I have so much to be thankful for!

Happy Thanksgiving Week!

Thursday, November 17, 2011

Prematurity Awareness and what it is all about...

This month is all about Prematurity Awareness and today is World Prematurity Awareness Day...
I could write a book about what this is all about...

Prematurity is all about being cheated out of a full 40 weeks of know, the part of the pregnancy where women complain about...yeah...thats the part prematurity skips...I always wanted to be that pregnant woman complaining of her swollen cankles, her sore back, hips, etc...

Most of my babies came at 34 weeks...the longest I ever got to was 36 weeks...still early, but not as early as my twins whom I was cheated out of just about half my pregnancy. Pretty much the whole third trimester (with a little bit of second trimester)...17 weeks early. I missed out on everything except to feel the two of them moving around in me. Prematurity robs a mommy to be of her special time and its a very hard thing to take in.

Prematurity is about having your baby early, not being able to hold your baby right away...sometimes even for weeks.

...Its about being thrown into the whole NICU experience, be it either for feeding and heating issues or more, much more serious issues that mean life or death.

...Its about leaving the hospital without your baby...worried, scared and sad.

...Its about putting your baby's life in the care of the team of doctors and nurses in the NICU.

...Its about praying to God you don't get THAT call from the hospital to come right away because...well...they don't want to worry you...they'll tell you when you get there. Worry, pray, cry, worry, pray, cry....

...Its about finally being able to take your baby home, but not without infant CPR classes and car seat checks to make sure your little one can handle sitting in a car seat without change in oxygen sats or heart rate drops.

...Its all about learning how to use home health care equipment...apnea monitors, pulse ox monitors....when the alarms go off...what do you do? Worry, pray, check to make sure its nothing...then, go cry into your pillow.

Its about medications, doctor visits, therapies, feeding issues, hospital stays, RSV, being on house arrest from October to April for fear of your preemie getting sick.

Its about delays in development, hearing loss in some, eye problems in others.

Its about looking to the future but not being able to because of the fear that grips you at the thought of it.

And finally...

Its about many times, not bringing home that baby that you carried, had big dreams for, prayed over, cried over...loved.

Part one of my twin pregnancy video

Part two of my twin pregnancy video
Premature infant
A premature infant is a baby born before 37 weeks gestation.
At birth, a baby is classified as one of the following:
Premature (less than 37 weeks gestation)
Full term (37 to 42 weeks gestation)
Post term (born after 42 weeks gestation)
If a woman goes into labor before 37 weeks, it is called preterm labor.
Often, the cause of preterm labor is unknown.
Multiple pregnancy (twins, triplets, etc.) makes up about 15% of all premature births.
Health conditions and events in the mother may contribute to preterm labor.
Examples are:
Heart disease
Infection (such as a urinary tract infection or infection of the amniotic membrane)
Kidney disease
Different pregnancy-related problems increase the risk of preterm labor:
An "insufficient" or weakened cervix, also called cervical incompetence
Birth defects of the uterus (which is what I have)
History of preterm delivery
Poor nutrition right before or during pregnancy
Preeclampsia -- the development of high blood pressure and protein in the urine after the 20th week of pregnancy
Premature rupture of the membranes (placenta previa)
Other factors that make preterm labor and a premature delivery more likely include:
African-American ethnicity (not related to socioeconomic status)
Age (younger than 16 or older than 35)
Lack of prenatal care
Low socioeconomic status
Use of tobacco, cocaine, or amphetamines

A premature infant's organs are not fully developed.
The infant needs special care in a nursery until the organ systems have developed enough to sustain life without medical support. This may take weeks to months.
A premature infant will have a lower birth weight than a full-term infant. Common physical signs of prematurity include:
Body hair (lanugo)
Abnormal breathing patterns (shallow, irregular pauses in breathing called apnea)
Problems breathing due to immature lungs (neonatal respiratory distress syndrome) or pneumonia
Lower muscle tone and less activity than full-term infants
Problems feeding due to difficulty sucking or coordinating swallowing and breathing
Less body fat
Soft, flexible ear cartilage
Thin, smooth, shiny skin, which is often transparent (can see veins under skin)
Not all premature babies will have these characteristics.

If the infant has breathing problems:
A tube may be placed into the windpipe (trachea). A machine called a ventilator will help the baby breathe.
Some babies whose breathing problems are less severe receive continuous positive airway pressure (CPAP) with small tubes in the nose rather than the trachea. Or they may receive only extra oxygen.
Oxygen may be given by ventilator, CPAP, nasal prongs, or an oxygen hood over the baby's head.
Nursery care is needed until the infant is able to breathe without extra support, feed by mouth, and maintain body temperature and a stable or increasing body weight. In very small infants, other problems may complicate treatment and a longer hospital stay may be needed.

Possible complications that may occur while in the hospital include:
Bleeding into the brain (intraventricular hemorrhage of the newborn) or damage to the brain's white matter (periventricular leukomalacia)
Infection or neonatal sepsis
Low blood sugar (hypoglycemia)
Neonatal respiratory distress syndrome, extra air in the tissue of the lungs (pulmonary interstitial emphysema), bleeding in the lungs (pulmonary hemorrhage)...this is what took our Nick to Heaven.
Newborn jaundice
Patent ducturs arteriosus this is what Kenny had to have surgery on when he was 7 days old.
Severe intestinal inflammation (necrotizing enterocolitis)
Possible long-time complications include:
Bronchopulmonary dysplasia (BPD)
Delayed growth and development
Mental or physical disability or delay
Retinopathy of prematurity, vision loss, or blindness

One of the most important steps to preventing prematurity is to receive prenatal care as early as possible in the pregnancy, and to continue such care until the baby is born. Statistics clearly show that early and good prenatal care reduces the chance of premature birth.
Premature labor can sometimes be treated or delayed by a medication that blocks uterine contractions. Many times, however, attempts to delay premature labor are not successful.
Betamethasone (a steroid medication) given to mothers in premature labor can reduce the severity of some of the prematurity complications on the baby.

Wednesday, November 9, 2011

U.S.S Kenny

(Ultra Super Special )

Last week was picture day for Kenny at his special needs preschool. It's been a very emotional day for me. At one side, I am so excited that he is healthy enough to be at school to be getting his picture taken..actually...I should say, am extremely blessed that he is here at 4 years old, in a special school and getting his very first school picture taken.
And on the other end, I am so sad at the fact that...again...another first that his twin, Nick won't be experiencing. I guess this life of being a bereaved mother with a surviving twin will always be a bittersweet one.
Because of this, I made a pin for Kenny to wear on his shirt. It's an angel pin with a very tiny prematurity awareness ribbon dangling from it.
I sometimes think that it's not fair that I try to keep nicks memory alive through Kenny, but it's how I am dealing with this and Nick will always be Kenny's Twin....
On another note, Kenny got his new hearing aids...YAY!!!! They are different than the last ones he had, lost and broke (haha). They are made so the teacher can just talk into a microphone and he will be able to hear it where ever he is and whatever he is doing...rather than having to sit right next to an FM speaker. He was denied several times from Medicaid but with the help from all of his doctors, specialists, teachers and us...we finally got them!
Kenny's health has been so-so, (knocking on wood) he hasn't been THAT sick to end up in the hospital...just the typical coughing and runny nose.
We got his report card today...he has really excelled in school! He is really working on trying to meet all of his goals from his IEP. He is starting to play with other kids, vocalizing more (not words...just a lot of sounds...but we'll take it!), just all around really starting to act more of a 3 year old! I'm so very proud of him!

On another note...I had to put my Milestones For Miracles on hold last month and part of this month due to personal reasons. I am sorry if I didnt get some shirts out to those that needed them...I promise to make it up to you all. Its just that I had some pretty bad luck (things happen) lately and I had to put things on hold. I WILL be starting up again this weekend...I PROMISE!

Crazy, crazy last couple of weeks...part one

How proud can a mom be? Very. Watching your oldest daughter and her cheer squad completely proud! They did a great job...didn't win, but did an awesome job anyhow!

The day started at 5 in the morning....oh wait...let me back track a little....

It was the start to the very busy weekend ahead, Kenny's PTU Halloween family fun night. Thursday was Kenny's Halloween party, and Friday was the day to start my 300+ cupcakes for our churches Spaghetti dinner. During the day, I dealt with a very crabby Kenny, a day out of shopping for cupcake stuff and then picked the kids up from school, did a few more errands and then started the cupcakes. I got 13 dozen cupcakes made (6 dozen red velvet and 7 dozen apple/ scratch). I was working on the chocolate chip cookie dough cupcakes when the apple/bananas were done. I grabbed them out of the oven, and closed the oven door. All of a sudden the entire top (control panel) of the oven/stove sparked...A LOT...and burned all the dials and wiring! freakin exploded. So...what was I to do? After crying I laughed at what else could go wrong? I mean....its been one thing after another...It has been almost comical!

I can rule out a big glass of wine because of the heartburn it has caused me in the past. Maybe a long trip off of a short many people counting on me and would miss the maid work...haha. So I just had to say screw it. screw the broken oven, the electrical in the house that makes every light bulb blow every week, the broken doors, small apartment sized refrigerator, the ants, the water seeping in the basement, the cement blockade that I hit with my van, and the screaming/crying fits from a beautiful little boy who cant help it and from my other kids who can. Screw the giving up my life as an artist, wanting to be a bridal/headpiece boutique owner, wanting to,, for once be a "high maintenance" type of person.....

...I'm just gonna remember that my life has a path of its own. I've tried and tried and tried...its almost like George Bailey in Its a Wonderful have a whole life planned out and it went completely in a different direction.

S0 after my small pity party, I went to bed to only wake up every 2 hours to Kenny. Knowing that we had to be out of the house at 7 for Taylor's cheer comp. in Akron.

The morning went with the usual fighting (waking a bunch of kids up a 6 is never a good thing). Oh...and by the way, I now know why we need more than one and a half bathrooms in the house. Taylor's hair was in a perfect high ponytail and she looked like the perfect cheerleader...while we were all dressed in the school colors to cheer them on! Finally, we all piled in the car...while some of the kids were still fighting...and headed out.
Getting there at just the right time...not too early and not late at all...yes, that was an amazing feat for us, we're always late!
There were a sea of different cheerleading outfits (girls included) walking around and practicing for the mind you, this is a middle school catholic cheer booty shaking and not a whole lot of acrobats.
The girls did a great job, they were all in sync and worked hard to perfect their cheer/dance. What was really surprising is that the football team was there to cheer on their cheerleaders...
What a great time we all had. The girls didn't win, but they won because they were amazing to us and to themselves! We'll get 'em next year!

Here is the link to the Video I made of the cheer:

Saturday, November 5, 2011

Artwork from Sydnie...

Sydnie made this for all Souls Day at school...Sydnie is looking up at Nick in the sky (as an angel). She made wings on the "N" and a halo over it. All her idea. Brought tears to my eyes.

I love my kids so much and wish they never had to experience the death of their brother.

Wednesday, November 2, 2011

Fever or the real thing?????

Mommy, I see guys in our room...don't you see them? They're right over there (pointing by the bedroom door). As the night went on, she still was waking me up to tell me that these guys were scaring her. Feeling her head, I knew she was delirious with fever so I took her out of her crib (which is in our room), and took her downstairs to get her some Motrin for the fever. I brought her back in bed with now in our king size bed, we have Kenny at the far right, my husband, Gina and myself with just about 3 inches of bed before I hit the floor.
By now it was 4 in the morning and I have been up for 2and a half hours trying to convince my 3 year old (and myself) that there was no ghosts in our room let alone, in our house!
As she was laying next to me, she pointing towards the door of the room insisting that someone was standing there. I told her to tell the ghost to go she was yelling at it to go...then I pulled the blanket up closer to us with the iPad on for a night light (playing soothing Christmas music). It seemed to be working...she dosed off for about 4 minutes...then I see her stating at me...well...past me. She said, mommy....the guy is right next to you, don't you see him? He's right there. this point, I am freaking the heck out! I pulled the blanket up over both of our heads and was trying tho wake my snoring husband up from his deep sleep...which he so badly deserved after working all hours of the day and night.
So we both finally fell was probably from lack of oxygen due to the blanket covering our heads...haha...
Morning came, and she woke up taking about the people she saw in our room. Taylor nonchalantly was asking her very general questions, as to not put ideas or words in her head....questions like....How many are there? (answer: 3). How old are they...are they like my age(12), mommys age or grant as age? Her answer....a guy mommy's age, Kenny and a little girl with brown hair. Hmmmm.... Now I have to the one that she says was Kenny...was it Nick? I guess if you believe in this kind of stuff, then it is very interesting...especially wit hthe odd things that have been happening around here lately. But, if you don't believe, then I guess you could chalk it up to being delirious with fever or something real logical. I'm not sure what believe...all I know is that she was very sure and positive that there were people in our room...and it wasn't us. To top the whole thing off...this was the second time in 3 days that she has freaked out about these people in our room...and coincidently, the last episode happened in 11-1-11 (all Saints Day). I am a very strong believer in the powers and meanings of 11:11. 11-1-11, or anytimhpg that. Eeeeeeek!

Everyday is something new yet constantly the same

It's giving the same feeds and meds...
Trying to feed the same foods, the same way.
It's the hoping that this day will be THE day that you finally get the whole eating thing.

It's praying that he cough Kenny has doesn't land him in the hospital...even 4 years later (after his early birth)
It's the loving him, that beautiful smile...the knowing what he's been through and wishing nothing but great things for him.
It's knowing that his life will be a struggle harder than some but a little easier than others.
It's the battle of wanting to have a life outside of just being a caregiver mommy but knowing that it's impossible. And honestly, It is a hard pill to swallow at times, but OK at others.

It's getting the dirty looks in stores, restaurants and wherever else we go as a family because people just don't understand the loud screams and tantrums of a child with autism and hearing loss.
It's the nonstop day (and night) that I breaks, no respite and unable to quite understand what my child wants and needs.

The newness is when he comes home from school with a new art project the teachers helped him with, a new sign that he uses at times when he really wants something, or even this past trick or treating when he ran from house to house opening his bag for candy...then doing the sign for "more". He'll never even eat the stuff, but for him, the fun of it all was going door to door!
It's the feeling if praying that the cold he gets doesn't turn into something even more. Holding my breath at every cough, breathing treatment and fever.
It's also the feeling if trying to juggle 6 other kids with their wants and needs. Helping with homework, breaking up fights between a few, trying to them to help out but knowing very well that they won't. The laundry, meals, dishes, picking things up....yep, all on me. They have totally used my weakness of having to take care of, and watch Kenny 24/7 to their advantage!
I'm living a nightmare whom not many would want. but many feel that I brought it on myself for having so many's to those that say/think that...

My husband and I decided to have a big family...every child very welcomed. The fact that we have a special needs child was something that we were no expecting but are doing lour best taking care of him (and the rest of the kids). Its not what many people experience in their lifetime....having tons of kids, losing a child and having a child with many extra medical and special needs.

So onto the bad luck we've been having...ha ha...

The oven blew up On Friday night while in the process of making cupcakes for the no stove. My daughter Gina is seeing dead people in our room at awkward esp. On 11-1-11, we have several birds living in our, and the electrical throughout the house is slowly....whats the word...dying.

I am very blessed to have an amazing husband who is my best friend. He is a very hard worker and loves spending time with the kids. Now if we could just find a date night (OK...make it a weekend), it would be awesome!

Its been one heck of a few months in which I really need(ed) to regroup and come to realize that sometimes dreams don't come true and that if you want something badly...sometimes you just cant get it...So basically, I'm drained and honestly have no fight left. Ive been through way more than I ever thought of and can't really handle much more. Ok stepping off the pity party podium.
Btw....thanks again EM:HE for helping us, it was so worth it...haahaa! I just need to rest my mind and soul and self.
Sometimes I miss my old life, but love my new life even though I sit and complain (again...this is why I write this write out all my feelings...positive & negative).

Tuesday, November 1, 2011

Halloween party at preschool

Thursday marked the day of Kenny's school Halloween party. We skimped out on costumes this year, just because the money situation hasn't been the luckily I found these cute glow in the dark skeleton PJ's for Kenny AND Gina! Perfect for a school party!
Gina jumped right in and was part of Kenny's class, enjoying snack time with her big brother and his friends & teachers...

Then it was time for trick or treating throughout the school...and following that...the class picture *yes, Gina was in the picture too.

In his classroom, I noticed these cute little bats that the kids made...

And this fun sensory/therapy pumpkin. It was teaching the kids with special needs to hammer the golf t's in the hallowed out pumpkin...

After all the class time and trick or treating, it was gym time. Kenny loves to go down the slide.
Here...his teacher was helping him on the obstacle beam...

Gina showing off to everyone that she could balance rather well...and look cute doing it!

I HAD to get a picture of my two skeletons. I just love these two! They had more fun!!!!