Friday, March 13, 2015

A Friday the 13...not to remember

On top of my son having stomach issues...from random vomit on Monday (no fever or vomit after said issues at school) to not peeing Tuesday and puking on Wednesday afternoon (with no fever or other vomit after coming off the bus) and then...pain in the feeding tube only find out that the balloon broke. Thinking I had a back up tube from the last supply shipment to only finding out that the supplier never had it on their order. So what's a mom to do on a Thursday night when a g-tube is falling out? I taped and ace bandaged it around his tummy, in hopes that the school was able to give me the extra one that I gave them at the beginning of the school year (as a backup). This morning was supposed to be a get ready and attend a very dear uncle's funeral. We loved this uncle so much...he was a great human being...and his surviving husbands aunt is just as great. Anyhow, I woke up, got dressed and made up. I then woke up all the kids, ironed and called the school to see if I could drop by to pick up Kenny's extra g-tube that they had with all of Kenny's medical supplies. Nope! They couldn't find any sign of a feeding tube. No nothing. So, now we have to wait till Tuesday for a new one. 

I then get a call asking us not to bring our Kenny to the funeral. REALLY? He might upset and disrupt people? I already had him ready to go...he was even doing the sign for the Father, Son and Holy Spirit. How can they ask that of us? My husband and I were beyond hurt. We were both in tears! And to not stick up for us. really? Yes, my son is loud, runs around, and cant say true words...oh, and much of what he does, is awkward and clumsy...but he is alive and loves people and gatherings of any kind. He doesn't mean to be loud, but because he is severely deaf and had autism...his voice is loud and very repetitive. We dont go to too many place with him because of these issues, but thought we were safe with family. Ive always heard that you need a villiage to help raise a child (especially a special needs child), and yet, its just...well...not that. I really dont think people realize how bad it feels to be looked at...the head shakes in dislike...why? Because we are doing the best we can with what we've been dealt. Every day is a struggle, yet my husband works hard, i work hard...our hard to keep it all together, the best we can. 
We've been through so much in these past 8 years (a death of a child, a baby teetering on death in the NICU then all the ups and downs of having a medically fragile child that can pass at any time ...amongst many other hurdles)...that this was the straw that broke the camel's back and we just couldn't handle it. We have a child who is almost eight but developmentally more like a 2.5-3 year old. We have to give him medicine daily and worry about every cough or stare in case his lungs are giving out or if he's having a seizure. We never thought We'd have to stick up for our developmentally disabled/medically fragile child from those close to us...but happened. I wont let my son who has beat many obstacles and odds...just to smile, laugh, run and play, be discriminated anyone. I love our families...I really do, but when it comes to my son, I...WE, wont be pushed aside. We've come this far...20-something years together and 8 kids, many weights have fallen on our shoulders and fingers pointed at us...this time, we're not bowing out gracefully. We did nothing wrong and we wont hide our handicapped child away from the world! We wont allow any more sadness, stress or bullies hurt our spirits and break us. We've only ever wanted to keep family together...have family stick up for us...for our son...

Thank you for supporting us and God bless.

Sunday, March 1, 2015

So much to update on! feels so good to finally be updating with some awesomely amazing news! First off, let me start by saying that life has been really good to us lately (knocking hard on wood). There has been no real sickness for Kenny...which is HUGE considering he is usually sick all season long. Minus a few unexplained seizures, hes been pretty healthy! Last week, Kenny had an EEG...still no word on the results...but he was a trooper!
I do have some fun news to share...Kenny is almost potty trained!  I give this huge accomplishment to his teacher! She saw that he was ready when i was so stuck in the same rut, day in and day out. She saw the possibilities when i was burnt out and exhausted. We do have accidents daily, but...just like a 2-3 year old learning to go in the potty, Kenny is doing awesome! We just have to keep in mind that just because his age is 7, his mental age is more of a 2-3 year old...sort of hard to swallow, but true. 
At school and at speech therapy, he is learning many, many signs and is really working on verbally saying, bus, outside, backpack, and names of some family members! He has been wanting to do things on his own...but wants me, his momma to (doing the sign for "help") help him in some way. Yup, the kid is a mommas boy. Yay me (eeek).
As you all know, this winter has been brutal...i mean...tons of snow and record below zero temps....and that means...HIBERNATION for me! So while being couped up in our house, I've been working on couponing (which i took a break after thanksgiving)...and let me tell you...its addicting and actually makes shopping fun...almost adventuristic (if that's even a word)! To spend more than .75 on a box of cereal is crazy to me now! The way to start, is by buying several newspapers with inserts. I belong to a couple of Facebook groups and pages that coincide with some blogs that I'm following...i recommend you doing the same. Now keep in mind, couponing, when you want to stockpile, means you only match up sale items with coupons...only a few items at a time so you don't get overwhelmed. There is a lot to learn, it has taken me about 4 years to finally understand the whole takes me a whole day to just plan, print, cut and organize my shopping trip...but well worth it! I will be talking more about couponing in future posts! 
Ok, back to this winter and my hibernation....Valentine's Day and Pintrest encouraged me to do this:

I am secretly hoping i am creating fun memories for my kids to tell their kids ;)
My Instagram addiction (in which i also have) has taken hold of my daughter, who loves to post pictures of the dinners i have made...

Thatsmygirl!!! Haahaaahaaa

And since we've been doing fairly well with this new house...(i say new, but we've been here almost a year this month), my husband has decided to take the next step in his business...he is going digital! It means that money will be a little tighter (especially since the county keeps raising our property taxes) because of the lease of a digital printer, but it will also mean that he is taking his company into a whole new area of signs/banners/graphics making! You cant make money without taking the plunge...soooo...we are. Many prayers are needed that we can pull this off...its a huge gamble and I've been worried about prayers please. 

Finally, its that time of year...lent...and...cupcake bake sale every Friday at our church. So I'll leave you with an image of the variety of cupcakes from the first fish fry bake sale. Ive been trying to make many different kinds each week so i know which ones are popular. 

This is all to get me prepared for a big event that i will be doing in April (more to come)...

Monday, December 15, 2014

19 years of good times and bad...

Sickness and health, richer and poorer....and, well...we pretty much have been there, done that. Where did those nineteen years go? I still remember everything like it was yesterday. The engagement, the second engagement, the planning, the designing our invitations....the wanting to have our wedding close to Christmas because it was our favorite time of year...not to mention all the beautiful decorations, greenery and lights everywhere! It was perfect! I was working at a bridal store so I picked out the perfect dress...of course I had to make it my own by adding long sleeves and an even longer train. Picked out just the right brides made dresses for all of the girls in my wedding party...because...god knows...we had one heck of a bridal party!
I remember getting ready in my bedroom the morning of my wedding is it. And yes it was....true love! The way he looked at me, talked to me...just us being us. Having so much in common couldn't of been a fluke, could it? I mean, I never really looked at blonds before, but something about this boy made my heart skip a beat. We both were artists, both were twins, both came from families with 7 kids...but just the opposite (we had six girls and one boy and he had six boys and one girl). We both loved holidays...Halloween, Christmas, Easter....even the Forth of July was on that list. Oh...and when a good song comes on the out because he could sing notes around most. It couldn't be a fluke, could it?

Walking down the isle at the church and laughing to my dad that the peel and stick anti skid shoe pad just stuck to the runner...and yes, it shows up on the video! ...our first kiss as husband and wife... The amazing reception we had......dancing till they turned the lights on to kick us out... The ice sculpture......the beautiful cake... the Christmas ornaments I made for our favors...and yes, the DJ calling you Andrew rather than Anthony. Sharing our wedding day with the anniversary of your aunt and uncle also meant a lot to us.

I remember being sick on our honeymoon in lovely Middleburg Heights, Ohio...yes...20 minutes from home. Also cutting down our first Christmas was huge and beautiful...and it was ours! I still have the gifts from the shower and of my favorites...the nativity. It's a reminder of why we celebrate Christmas...but also of our life together was just starting off.
We found the perfect house...the yard was huge and the house...well...for a newlywed couple, the three bedrooms were was a guest room and one was an art studio....but the kicker was the neighbor that greeted us that cold snowy day that we looked at the house. He became family to us. He was like a father/uncle/friend figure that was there for us when we started our married life off...all those years ago.

Who would have thought that me kinda sorta lying to our priest about wanting kids...yeah...I was scared stiff about kids. I honestly didn't think I wanted the time. So in order for a priest to marry you, we were interviewed by my priest...the question came up..."will you welcome children into your life" (or something like that) and while Tony and I had a few moments alone, I told Tony I was going to answer that question with a no. He then quickly convinced me that I should think this question through because he may not marry us for this answer alone....hmmmm...lie to a priest? I know! I'll think of puppies! I looove puppies and would have a house so yeah. I have already gone to confession about this...I lied to our priest. I welcomed children into our lives...and boy did I ever!
Something about actually being married, living in a (at the time) big empty house and, well....19 years later we have filled the same "starter home" quite nicely, with kids from 17, 15, 13, 11, 9, 7 and 6 in our lives along with heartbreaks of our many miscarried babies and our precious angel...Kenny's twin, Nick.

In those nineteen years, I became a stay at home mom, Tony started his own business, spent many hours praying...laughed, fought, cried and dreamed together. It's not where we thought we'd be nineteen years ago, but it's been a great ride. I couldn't of asked for a better partner to share all the ups and downs with. We have learned that even though we have been through soooo much, it has made us even stronger, closer than ever. We've faced death eye to eye in the loss of our son, throughout the miscarriages and hard pregnancies, though short and long NICU visits, first words, first steps, first days of school for each kid. Through raising a chronically sick, special needs son who can be demanding, worrisome, stressful, scary to see the future of... Through debt and also the feeling of paying off a bill...through laughing when something goes wrong because...I much worse can it get, right? Through late night calls to say not to stay up so late...oh...and don't forget the coffee. Through the OMG how do you guys do it, you are so blessed....but also through the criticism of actually doing it!
Through house hunting, moving (what a huge pain) and settling in a new life. Crazy how things work. It seems so long ago...but just like yesterday...this crazy whirlwind of nineteen years!
 We have lost so many people in these nineteen years but know that each one is watching and waiting for us for a huge reunion. Through dreams broken but new dreams to come...
I am so perfectly glad that these nineteen years happened with you by my side, and honestly...wouldn't change a thing...
Except....maybe...nah ;)
Thank you Tony for the life I have shared with you...the life that nineteen years ago, I said "I do" to!
I love you deeply and passionately...with all my heart. Now I wish time would slow down a little so we would be able to enjoy our life, kids, families, friends and hobbies.
"All these years...and we still have the heat" the movie!

Friday, December 5, 2014

Thankful for Thanksgiving, family...friends...and the holiday season

After a really long last few weeks...I finally have a few minutes to sit down and catch everyone up to the happenings of the Tomecko house.
The house is still under decorating stage (and will probably be until Dec, 24th), but this is what I have come up with thus far...
inside, I have wine bottles filled with lights....
doorways with garland and lights...I am in the process of putting little, hanging snowflakes from the dollar store in the hallway here...
the wreath got relighted with green and red lights along with a beautiful beaded snowflake from T.J.Maxx.
We decided to celebrate Thanksgiving with my entire side of the family (minus my parents who were supposed to come, but couldn't travel) I think I made them proud and hosted a grand old fashioned...Kowalczyk family Thanksgiving. Its so weird to think, that because of the love of my parents...all these people were created....Kids, grand kids and great grand!
My twin sister and her family came in....I've haven't laughed so much and hard in such a long time. It was really needed. I actually didn't realize how flatlined I'd become until my sis and I were just hanging out, laughing about we used to do!
There was the turkey bowl in the morning...with kids and parents of my oldest son...followed by Thanksgiving breakfast. Then, as we were working on that...dinner was being put on...
The food was crazy! Two 23+ pound turkeys, 25 loaves of bread for stuffing, 20 pounds of brussel sprouts, 20 pounds of potatoes, 20 sweet potatoes, and so much more!
 My oldest sister doing the honors of carving the turkey...

 It was a perfect Thanksgiving from start to finish. One that I know I will keep near and dear to my heart forever. I love my family and friends!

After a few week of regrouping, semi-relaxing...and more decorating...I attempted our annual family pictures for our Christmas cards! I wont post the actual pictures...but here are some outtakes that I thought were perfect.

We had our share of tantrums and screams...but all in all...I do believe...the shots came out great!
This holiday season has been such a blessing to us.  To be able to get our families together has been the one thing I really wanted. The most important thing in life is love and family...I want my kids to grow up with the fond memories that I have growing up...big parties with extended family...laughing and reminiscing and being close!
I am...we are...very blessed.

Monday, November 17, 2014

Today...we wear purple!


My girls, Kenny and I all are wearing purple today...Morgan has purple socks on! This is for World Prematurity Awareness Day!

World Prematurity Awareness Day

I am the mother of a premature baby..well...8 babies (no, not all at the same time).

 I did not drink, I did not smoke, I did not do drugs, I took my vitamins and went to all my doctors appts. I did everything right and still had my twin boys at 23 weeks. Premature birth can happen to anyone at any time in their life. It can happen to you, your child, your grandchild, your best friend. It does not discriminate in who it chooses or why.

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...or a blog ;)

Prematurity is all about being cheated out of a full 40 weeks of know, the part of the pregnancy where women start to really 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...but I never had the chance.

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, lung issues that could last a lifetime, brain issues and injuries, feeding issues which some may need a feeding tube, 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.

When you are the parent of a premature baby your whole world will stop. You will be told your baby might not survive and if it does, it will have lifelong health issues. You may be told he/she may never sit up, crawl, walk, see or hear. You will cry yourself to sleep at night and pray your baby lives another day. You will ask God to take you instead of your tiny child. You will fall to your knees every time your tiny baby stops breathing. You will stop sleeping and every time your phone rings your heart will drop to the floor because you fear the worse.

Having Kenny and Nick 17 weeks early has changed me as a person and Mother. I will never take the health of my children for granted again. Please remember all of the babies who didn't make it and all of the ones who have fought so hard to survive.

NOVEMBER 17th is National Prematurity Awareness day. Please wear purple to bring awareness to this issue so someone you love doesn't go home from the hospital empty handed.

Here are some facts and terms I would like to share:

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.

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:
Brain injuries from bleeds
Delayed growth and development
Mental or physical disability or delay
Retinopathy of prematurity, vision loss, or blindness
Feeding issues/gastric issues
Hearing loss

The list goes on and on with long-term complications. Every preemie is different. With ours, the list seems never ending...even 7 years down the line, we hold our breaths at each sickness or doctor visit.
But we also get to experience small miracles daily with how far our 1 pound 7 ounce baby boy has grown.

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. I was lucky enough to get steroid shot for most of my kids.

Most of this won't mean anything to anyone, but if I could get through to just that one new mom who is scared to death...having just been thrown into the whole Preemie experience, I've accomplished my goal. 

So Today, wear purple proud and help raise awareness to prematurity!