My girls, Kenny and I all are wearing purple today...Morgan has purple socks on! This is for World Prematurity Awareness Day!
Monday, November 17, 2014
My girls, Kenny and I all are wearing purple today...Morgan has purple socks on! This is for World Prematurity Awareness Day!
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.
Friday, November 14, 2014
Tuesday, October 28, 2014
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 popular...at 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 rough...at age 17, she lost her only brother. There were many issues happening in the house at that time...so 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 uterus...so 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 needed...now 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
Friday, October 24, 2014
Tuesday, October 21, 2014
To start this post off, I have to say that every day we struggle with one thing or another with Kenny but he is and always will be my little superhero. As I've said in previous posts, when the pediatricians look and tell you what COULD happen with your micro preemie...they don't know themselves...for the most part, they are giving you either an extremely horrible outlook (example: vegetative state, never walk, or even death) or they could give it to you sugar coated (oh, he'll catch up by his actual birthdate, he's developmentally DELAYED...but...doesn't that mean...a delay in development...so, he...should catch up. right? In our case, we have a little of both.
But no one told us it would honestly be THIS hard. I mean, I thought we hit that peak of "preemie issues" that were given in that initial list of things that are told to you. I guess people forgot to mention what happens to a micro preemie when they are no longer babies, toddles, preschoolers...but when they are actually in kindergarten or first grade!
I'm not going to sugar coat this post...its very difficult. There, I said it. Sometimes I wish we weren't in this whole "special needs/medically fragile" nightmare. I love Kenny deeply and we have this extremely close bond, him and I, but sometimes I wish I could go back in time and erase my life. From when I noticed Nick not looking the right color in the NICU (the day he passed) to today. My whole mommy hood was consumed by mourning, worrying, caring for a sick little guy, worrying, hospital stays, mourning, and medical stuff. Where was the time for me to enjoy the other 6 kids (I'm including Gina)? Now that some of our kids are full blown teenagers, I am feeling really guilty that I wasn't their for them more. What these kids had to experience in losing a brother and seeing how sick and close to death Kenny has come numerous times...and even having a brother that is not typical...It robbed them of their childhood innocents, and I'm sad for them. I am sad for the fact that we cant just go to a store or restaurant as a family, because Kenny has meltdowns. I am sad that we cant just pick up and go hiking in the Metroparks because of Kenny. I am sad that we cant have the life we used to have...and even more so, I am sad that Kenny cant experience what the older kids did when they were younger. I hate that when I still look at pregnant women who "just want their baby out anytime after 34 weeks" that I want to shake the stupidity out of them! I hate that I can never look at twins without thinking that I AM STILL A MOMMY OF TWIN BOYS. I carried them, I know what it was like to have a twin pregnancy (even if it was for only 23 weeks).
Every cold, I pray he doesn't end up in the hospital. Every doctor appointment or weird thing that he does and I choose to google it, could send anyone into a post traumatic stress moment. Every time I have to give him a tube feed, medication, change his poopy diaper or have to experience one of his OCD moments...I am thankful he's here, but I also feel so sad, stressed, angry and exhausted by our daily grind and what we have to deal with...
I hope this makes sense...
Anyhow, back to why I am writing this...
We took Kenny to his eye specialist because of his ROP that he developed when in the NICU. Last year, he was given a prescription for bifocals...this year, the bifocals are coming off. Not because they've helped, but because they haven't. His left eye has been going inwards more and more...and well, nothing is working. We are now going back on wearing a patch over his straight eye (the right one) to try to get his left eye to get stronger. He is still to wear his glasses because his eyesight is so poor though. The doctor believes that he will need surgery again, but not just yet. And it wont help his vision, it will specifically be for cosmetic appearances...you know...so the mean kids don't call him the slow kid with stupid crossed eyes. He is still monitoring his nerve damage to see if it is progressing or staying the same, but with this, I am now holding my breath on how his brain and the cerebellar hypoplasia are doing. I'm waiting for the second shoe to drop...so to speak. Is the arachnoid cyst growing? how much will he be able to learn? Why oh why couldn't those stupid neurologists at Metro and the Cleveland Clinic be wrong?! I so badly want them to be wrong with their prognosis...or their lack thereof! Years ago, they told me that he'd only be 1/2 of his age...developmentally. I hate this because, they are pretty close to being right. So, what else will they be right about? I don't want to know...or never want to experience...EVER but chances are, because of extreme prematurity, we will...plus much more...for instance, I also get to be the receiver of the best hugs, mushiest kisses and have my little boy for just that much longer.