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!

Friday, November 14, 2014

Short little exciting update!

Kenny just came over to me and did the sign for help. I asked him if he needs help and he shook his head yes...grabbed my hand and pulled me into the room and pointed to his box of cars that he wanted lifted!!! HE ACTUALLY COMMUNICATED WITH ME!!! This is HUGE! Every day I struggle. Every day...every minute is a struggle with guessing what Kenny wants/needs. He gets frustrated, I get's like trying to know what Helen Keller...seriously! I am beyond happy and grateful! I feel like speech therapy and this new school is really paying off! This added some happiness to my life today!

Tuesday, October 28, 2014

Reflections of life

Have you ever wondered how someone would explain your life to someone else? Did you do all you could? Was it good? Could you have changed circumstances? Would it come out boring or much to much to be true?
I could only hope that I give as much help, hope and information to those that are facing issues that I have dealt with these last 8 years.

So how would it start?
A person who grew up in a very traditional household. Her dad was a mailman and her mom worked in an office. she grew up with 5 sisters (one being an identical twin) and one brother.
In elementary school, she was not all...actually, she and her twin were picked on continuously. It was through sheer...well, not giving a crud about what others thought and the fact that they had each other...they both made it through.
Teenage years were age 17, she lost her only brother. There were many issues happening in the house at that it was rough for the whole family. She made it through along with everyone else in the family...and she pretty much had many nieces and nephews whom she didn't want to admit, but were more like little sisters and brothers to her. She really loved them...but being a teen...well...the moodiness got the best of her!
There were boyfriends whom she really cared about, even years later...but one just stole her heart...
A twin himself, an artist who came from a big family with very similar values.
She was very hesitant about starting a family, never wanting kids, this 20-something had a selfish, artsy way about her. She loved to dance at clubs...but rarely needed to drink. Was an animal lover to the extent. She'd take in anything (in which some were a little crazy...Leo the squirrel, a baby raccoon, and many birds...not to mention dogs and cats...but that's further down the road).
 A head on car accident put a lot of her dreams on hold...and it caused severe pain for years. Not sure what direction her life would take her, she teetered on a degree in art with that of assistant, managing a small but exciting bridal store downtown. Making headpieces, ordering gowns and loving life....after a crazy 7 years, the two married and soon after, came their first son. It was a crazy pregnancy which included getting 3rd degree burns from her dog accidently spilling hot tea on her...then a month later, her water breaking at 29 weeks....only to be on bed rest in the hospital for 5 weeks. Unsure of what was really happening, she did everything to keep the child that she was in love with, inside of her until it was safe for him to be born...and that is when her whole idea of life changed. She knew at that point that she would welcome as many children as God would bless her with.
She had baby after baby...every 2-3 years apart, all at 34-35 weeks gestation. Each one, was a blessing and happy time. There were NICU stays for feeding issues, hospital stays for lung issues and monitors for apnea.
She had a passion for holidays and family get-togethers. The first time she made a Thanksgiving turkey, she almost threw up from trying to clean it out, but it turned out to be a tradition and funny thing to look back on. Birthday parties for the kids were always planned with family in mind. She wanted to be the house where family would gather, grow and make memories for generations! She loved her parents and admired the way they worked together and made their marriage work...even through many rough patches.
When the third child came, she and her husband decided it was time that she stay home and raise the kids while her husbands sign business, he started a few years prior, could take off.
She put her everything into her family. Making family dinners every night, doing the laundry, cleaning, landscaping...she was having fun with the kids. Their house was getting smaller as their family was getting bigger but that didn't matter too much.
They rarely went on vacations but they did do fun things. Hiking in the creeks, pools, and an occasional trip to Alabama to visit her twin whom moved away after her first child was born. She had such a hard time with her other half moving away that she felt a little abandoned. She soon realized that it was ok and actually a fun place to visit!
After her fourth child, she and her husband suffered a miscarriage which she was so distraught over. A few months later, she got pregnant with another child, a daughter. Everything went perfect except she needed her first C-section. about 4 months later, she suffered another miscarriage...
Needless to say, these miscarriages broke her...but she seemed to bounce back, she had to. For herself, her husband and her kids sake...she did. A few months later...while putting up the Christmas tree before Thanksgiving, her daughter told asked her...If you had twin boys, what would you name them? She laughed and said, well, there would be no way I could have twins because of the heart shaped the docs said I couldn't and wouldn't have twins...and she fluffed it off.
Then, on Thanksgiving she was very moody and decided to take a pregnancy test. It was positive! The rollercoaster just went nuts from that point on! Due to bleeding early on in the pregnancy, they found out she was indeed pregnant with twins! Having a rough time keeping this pregnancy, she was an emotional wreck. She so badly wanted those babies and did everything to keep them safe. Sadly, she couldn't do enough and she had them at 23 weeks. Thinking nothing bad could happen, she let her guard down...and so...her one son passed away in her arms.
From wanting to die with her son, to wanting to give everything to help her surviving twin, she was in survival mode. The days turned into weeks into months and finally this blog was born. It was a way for her to cope with being torn from taking care of her surviving son to trying to care for the five other kids. While still in the NICU, she was pregnant for yet another time...this time, a perfect pregnancy...36 weeks and another little girl! Still feeling a loss in her heart, but finally a happy event to override a tragedy.
She poured her heart into taking care of their special needs/medically fragile surviving twin. Learning how to work oxygen tanks, heart monitors, change g-tubes, and then...having to deal with seizures, many hospital stays, therapies and diagnosis's and the "what ifs" that were becoming a very real part of their lives.
Since her last child, she experienced at least 10 more miscarriages and finally came to terms with her own fertility and age. She and her husband worked feverishly in getting a bigger home that they so desperately that they had 7 living children...of which a few were all ready in teen mode.
All the hard work paid off. but now the harder work takes over. Dealing with the throws of teens, not wanting to let go of her kids childhoods, yet excited to see what THEIR lives will be like...all the while still caring for a sick little boy. Her life was crazy at this point. Losing a few good friends, she had a hard time with life.  Questioning many things...Where was she going? Who was she beyond a mom/wife? Did she ruin her kids for having so many? Was she doing enough for them...or...too much? Could she have been a better mom/wife? All questions she asked daily. She had a hard time letting her kids grow and become young adults because of having to "let go" of her brother and her own son. How could she protect them from all the sadness and struggles she had to go through. She loved them so very much! She was afraid to look even a day into the future because of what she was afraid might be there. So very afraid to lose another child or person in her life, she was scared but very determined to shine through all the dark. She didn't want to be defined as just a mom, a caregiver or grieving mom. She wanted to shine bright with all her talents God has graces her with and to keep family together.
So goes the short version of my life. I can only hope that my kids love me as much as I love them, that they become amazing adults with amazing life tales to pass onto their kids!
 I guess in my life, I could actually write a novel...shoot, maybe a trilogy! I have Maybe I should rename this blog The Tomecko Trilogy!

Monday, October 27, 2014

More of Halloween 2014

On top of decorating the house for Halloween....the younger kids were able to "test drive" their costumes a few days early. I found that Kenny wont wear pretty much his entire vampire costume...including makeup, Gina needs a bigger shirt to be a Ninja Turtle, and that the face makeup used on Kayleigh causes her eyes to burn horribly!
  Our church had a very nice little afternoon get-together of families to celebrate the holiday...TRICK OR TRUNK...or is it Trunk or Treat? Whichever one it is, I have to say...I had more fun decorating our van than an elf working in Santas shop!
 I just love how all the cars were decorated!
 Even though the school was closed this year, I am very thankful that they have kept up with fun activities for those of us families that chose to stay and want to keep the Church and congregation fun, young and exciting!
Happy Fall!