Wednesday, June 5, 2013

End of the school year...beginning a new...

So yeah...it's hitting me hard that as of tomorrow, I will have 2 kids in high school. 
My oldest daughter, Taylor is graduating middle school along with her peers whom we've known since kindergarten!
 Us parents became great friends sharing the joys and pains of our kids growing up...right before our eyes, yet...how did this happen so fast?! There were field trips, concerts, sleepovers, holidays, class parties and fish fries...didnt we just celebrate their communion...oh wait...that was 4 of my children's  communions ago! I tried "taking it all in", being a hands on mom like everyone said, and yet...it still haunts me that I somehow missed her getting from a little girl just starting kindergarten...to here...graduating from 8th grade!
I am so proud of my daughter for becoming such a great kid (minus he talking back and the messy room and the grades...well...lets not talk about that...but I hear that is very normal). She has really turned into a blessing to us. I can't wait to see what these years ahead will bring (oh God, please be gentle).
As she takes this next step in her journey called life, I will be there for her cheering her on! I want to thank her for giving me a little...well...A mini me. Thank her for being the sweet, friendly little blonde girl that loved everyone and hated nothing (ok...so I'm talking about her BEFORE the onset of
hormonal crankiness).
I want to thank her for making me laugh, having a great mom/daughter relationship and being a test tube type of daughter...you know...she's the oldest girl so I'm using her as what works and what doesn't...my test tube daughter. LoL. If it wasn't for her, I wouldn't of met such wonderful friends whom we shared turning 40 together, girls nights out, them visiting me and cheering me up when I was in the hospital on bedrest with Kenny and Nick, and watching our babies become young adults! I will always cherish each and every one of them! 
So tomorrow we will watch as our second child graduates out of St. Francis. Such bittersweet feelings along with only the best of luck to all of them as they go off to high school. And for the teachers who have been there for them all these years...a huge THANK YOU, THANK YOU and THANK YOU!


Tuesday, May 28, 2013

In My Mind


In my mind, you are perfect,
With your missing little tooth that all eyes are drawn to.
Big brown eyes that say a million words that you may never say.
Your smile melts my heart, warms my soul and makes me giggle
Just knowing you know.

In my mind, you are healthy,
You run, laugh, play and sleep.
You can hear a bird chirp and the wind rustling the leaves
The meds are just routine,
The feeds...a peace of mind.
There are no diagnosis's and there are no labels...just you.

In my mind, you are brilliant,
Chasing you out the door because you want to explore...
Lining things up ever so perfect,
Grouping things that are somehow connected...
Knowing but unable to voice an opinion, a request...a want.
A world of knowledge hidden behind a seemingly locked door.

In my mind, you are invincible,
Surviving under dire odds
Being feisty enough to pull through illness after illness...
Your pain tolerance is though the roof with everything you've been through.
Strong enough to try to do things on your own...wanting no one but needing someone

And yet...when you're around...I am scared.

Scared of losing you...
Scared of losing me...
Scared of losing life.


In my mind, I am scared.





Tuesday, May 21, 2013

Toothless Tuesday!

It's been 6 years in the making and we finally reached a huge milestone! 


I didnt think I'd get so emotional over "just a lost tooth", but i did. you would think that after all these kids and all the lost teeth throughout the years that I'd be a seasoned pro, well...this seasoned pro broke down. There was a tear shed...a tear of joy that my little guy who was given an extremely small chance of survival has lost his first tooth. While he was in the nicu, I prayed to the heavens that he would live to experience all that life had to offer. Then again, while he was hospitalized all those times when he got so sick with the seizures, the sepsis, the pneumonia, infections and chronic lung disease flair ups that landed him in the picu on oxygen, I was hoping and praying for him to just have a normal life however long or short God chose...to experience all the firsts of childhood...his first steps, first words (be it words, sounds, signing or gestures), the first pee pee on the potty...(yeah, still waiting on that)...and his first lost tooth. Words can't describe the emotions of teetering on the brink...being told things a parent never wants to hear...yet getting the chance to play out these youthful firsts. We are so blessed!
  I also shed a tear for the fact that Nick would never experience a lost tooth. It brought me to another level of my grieving or my son. The "why's" (even though we shouldn't question things), the wondering of what Nick would have looked like, done...just everything. The raw empty feeling of missing him so much it hurts. This feeling comes and goes...I just wish that with every milestone, every first...it wouldn't be so painful yet so happy at the same time (if that makes any sense). 

I'm so excited and proud of my little man who never cried and it didn't even bleed very much. The tooth fairy will be making a special stop at our house tonight!!! Yay!!!!

Wednesday, May 1, 2013

May 1st...6 years ago

...6 years ago I was laying in my hospital bed crying because I was only 22 weeks and 6 days pregnant. I knew something was happening with my body even though there were no contractions showing up on the monitor. The nicu doctor came in and told me all the statistics of a micro preemie...the odds were really against them...in all aspects. My hormones were all wacky and I just had a feeling that I was going into labor. The doctor told me that if I went into labor that night, they would only give comfort care...but if I held off till the next day, they would try everything we'd want them to do to save them. that night, i remember feeling them move all around inside of me...kenny on my right and nick in my ribs on my left. i told them that i loved them very much and to PLEASE stay put for awhile longer. i prayed to God to help protect them. i fell asleep holding my belly like i was hugging my babies. at least while they were in my womb, i was protecting them. to be continued...

Tuesday, March 19, 2013

What does "stable" actually mean?

Kenny had his comprehensive care appointment today. They check his weight, height, lungs, BP, and nutrition. It all went fairly well. He hasn't lost or gained weight but the doctor noticed that he looked a little sunken in in the cheeks. I noticed it too, but didn't want to sound like a worry wart of a mom. We decided to start back up on his duo cal to see I'd that will add some weight to his body. Their main concern is that his body will start sitting down if he isn't getting enough calories...so were going to bring on as many calories as possible.
She asked me I'd I had any questions to which I said no, then she asked me how I was doing. Ok...well...you don't ask someone who has been going through he** these last 6 years, how I'm doing. I bawled my eyes out! It just sort of happened, ewps. I told her the honest truth...I wasn't good. I have horrible flashbacks of when nick was dying and every time Kenny was so sick, I thought he was going to die. I have anxiety over what to,or row will bring and...well...pretty much...I'm a mess. The PTSD and high anxiety that I've been facing has gotten me to the point where I keep asking what more? Waiting for the other shoe to drop. I said I was afraid of losing Kenny and she completely agreed that that was a very valid fear. She told me she love Kenny and is so sorry that were going through all this with him. I've been so strong for so long, that everything has finally caught up to me. The doctor reassured me that as of today, Kenny is stable. His lungs sound a little sluggish, but attributes it to a cold starting.
This whole life is something that I NEVER in a million years, thought I would be experiencing. It's very hard, actually...it's very painful. I did mention to his doctors about a make a wish for him and we all are looking into that. We don't know what the future holds for him...and I get physically sick just thinking about it. I want him (and the rest of my kids around until they are old and have to bury my 100 year old a$$). There is just so much on our shoulders and it weighing very heavy. Some say its our cross that we bare...but no..it's just so very much.
So...our Kenny is "stable" his is ok and for now, I will take that with a smile...but deep inside I just wish he was just healthy.


This picture is one of him sleeping with his favorite baby...buddy.

Monday, March 18, 2013

I've been busy with baking...

So it's the Lenten season and again, I am giving my services to help others. I've been baking cupcake...not just any cupcakes...gourmet cupcakes to sell at our church fish fry. I'm loving it. All day Thursday I bake and around midnight, when my legs are killing me, I pass out in bed only to wake up the next morning to get all the kids off to school and start making the frosting and decorate! Now, were not talking about a few dozen cupcakes...it's more like...50+ dozen!
I've added and tried so many new flavors...it's so fun to see what sells and what doesn't.










































Oh boy did we hit a milestone!

Having a child with special needs, milestones come as a huge welcomed step, especially if they have global delays. So as I am grateful to the Heavens and back that my son has slowly but surely reached milestones that we never thought he'd reach, there is one that he has finally reached...and it only took...almost 6-ish years...the milestone? The terrible twos (cue in I've horror sounds)
Since we all know that us moms have learned to take a quick bathroom break every now and again, especially us "older, seasoned" moms because the bladder you once had as a twenty-something year old has fallen ever so slightly after having kids...let alone 8 kids and 16 pregnancies in my personal experience...yeah...no comment from the peanut gallery....and no, I do not need Depends..yet.
Anyhow, stepping away from my personal bathroom break talk...
I got Kenny and Gina their lunch. They both wanted Ramen noodles cut up small...again, no comment on what I feed my kids, at least it's something that my tube fed son actually eats. I made them their bowls, told them to sit at the dining room table, told them that I had to go to the bathroom and I'd be right back. 30 seconds...ok...40 seconds it took me to go. I come downstairs to find what looked like a food fight had taken place...or...the noodle monster left a trail of his own..everywhere! On the couch, the floor, the tv, the computer...even in the kitchen! I asked Gina what happened and she shrugged her shoulders and said Kenny did it. Soooo, I looked at Kenny and he has his bowl, which is now almost completely empty, and is laughing...then he dumps the rest right on the living room floor! Oh dear god help me with this one. My house looked like it was struck by a tornado made of noodles, and my son who is going to be six but has the mentality of a much younger kid, just did this. It wasn't right...it was totally wrong. So I grabbed his hands and told him no and had him (and his accomplice, Gina) vacuum up the noodles. My poor vacuum is now filled with noodles. oh how I wish we had a dog again.
Part of me was so ticked off inside that they...he did this, but another part of me was this giddy little girl who was throwing a party inside because my son actually hit another milestone...a terrible one at that...but he reached another developmental step. And to that, I am so grateful. Having him makes me realize that even though I am totally exhausted (mentally, emotionally and physically), I am so glad to see him meet milestones. I hope and pray they never stop coming...good and bad ones (well, ok..the bad ones can stay away for as long as they can) because when that happens, my dreams for him ends.
So carry on noodle throwing, car lining, junk drawer emptying (and sorting into piles (yes, he does that too), doll carrying, little boy of mine, want to remember every thing you do that makes me smile and also irritates me...it means you're growing!

Sunday, March 10, 2013

Lasting effects of prematurity on this 2nd annual Parents Of Preemies Day

Today is  Parents of Preemies day!

Parents of Preemies Day is a national day of awareness on Sunday, March 10th, 2013 recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. 

Each year, 13 million babies are born prematurely across the globe to parents who never expected their birth stories would be so challenging. Though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads. 

In my husbands and my 17 years of being married, we have had 8 preemies. Our first was born at 34 weeks after 5 weeks of bedrest because my water broke at 29 weeks. My track record got a little better after that, my second daughter was born at 35 weeks, my third daughter...she was a 34 weeker along with daughters 4 & 5. There were no real concerns with my first five other than apnea, feeding/sucking issues and temperature control...which was all pretty much resolved when they left the hospital. I do think that it did have lasting long term effects which, to this day, have been fluffed off by pediatricians and counselors. From OCD to communication issues..with a slight case of autism like actions. But that's a whole other post ;)

When we thought we were done having kids, there came the shocker to us...TWINS. Now, anyone knows that when you are diagnosed with a bicornuate uterus, chances of carrying a baby is slim...but twins? Almost impossible. I was going to prove everyone wrong...well...sort of.
At 21 weeks I was put onto bedrest...at 23 weeks, I delivered our twins via c-section. That first day was scary...the whole second day was a dream...I was a mom to twin boys. I couldn't imagine anything ruining my happiness. I was on top of the world, even though my babies had an extremely low chance of survival. I never thought...in a million years that anything horrible could happen...it did. By the end of the third day, our world shattered into a million pieces...Our Nicholas passed away. It was such an out of body experience of every emotion possible...every raw feeling ripping through every inch of my soul. How could we...I...have a child that passed a way? It's a feeling that I feel over and over again thanks solely to my diagnosis of PTSD...yes, even after almost 6 years, I am suffering from a horrible mental issue that gives a person such vivid flashbacks...I can smell, feel, and see everything as it happened on that evening. Then, to go 129 days in NICU with our surviving twin...yes, the roller coaster ride was a very hilly one. One with a heart surgery, a NEC scare, many, many infections, a PICC line, to many numerous blood and platelet transfusions...and much, much more.

The worrying has not stopped in the NICU like I hoped or thought. There have been tons of hospital stays (knock on wood...not too many this year), diagnosises of microcephaly, Cerebellar hypoplacia, a possible rare chromosome issue, being put on the autism spectum, global delays, feeding tubes, hearing loss/hearing aids, muscle tone issues, eye surgeries, being non-verbal, severe lung problems which have landed him in the PICU...and epilepsy. 
Every day consists of medications, tube feeds, diaper changes (yes...at almost 6...and let me tell you...it's not fun), doctor and therapy appointments, a lot of repetition of...everything. And more anxiety and stress. 
The anxiety and stress gets worse when I sit and think of what the future holds...something that is a no no when ou have a chronically ill/special needs child. But I'm only human. I do think of the future..and it's scary. But on the other hand...he has come a long way and has proven that he is a fighter! The doctors told us that he may never walk...well...thanks to our baby #8...Gina...our rainbow surprise baby...she has been Kenny's surrogate twin. Helping fill the void where Nick should have been for her big brother Kenny. We went to a school skating party and she wanted to skate...well, Kenny saw that she has skates on and really wanted to try, so we got a pair of Fishe-Price skates from the rental booth (yes, they do carry skates for kids that have special needs), and he loved them! 



 
My little 1.7 pound miracle was actually skating!

So, the roller coaster ride will continue, the worrying never stops. At every runny nose. at every cough, the scary ride teeters at the top of a hill that makes me want to close my eyes tight and find my happy place, but I know that he lasting effects of having preemies and micro preemies...and even losing a preemie will always be my ride in life.
So happy Parents of Preemies Day! To all my readers that have premature children or even if you know of a preemie parent...talk about it. It helps. It makes the stresses of the birth, the NICU stay and  beyond that much easier.





Sunday, February 10, 2013

What Feeding Tube Awareness Week means to me

It's funny how life works. Just last night as I was giving Kenny his cocktail of meds before bed, I remembered that today was the first day of Feeding Tube Awareness Week. Yeah, us mommies of special needs kids cling onto all awareness days, weeks and months because it makes us feel that what we are going through...we aren't going through it alone. Anyhow...I was squeezing his meds through the extention that you hook up to the button on his stomach and I got a face and body full of all that I tried to put in. Here, he had a blockage. Great! There are three things I dread most in the world...puke, changing the frog tank when it gets green and slimy, and having to change a g-tube button. Especially after last summer when I thought I was a seasoned button changer...and as I was putting in the new one, his hole closed up...instantly...so we had to go to the hospital to get it reinserted. Let me tell you, this kid is tough because they had to literally stretch his tube opening and really push it in there.
So you see how I dread this blockage/changing a tube thing...it not for the faint of heart. I grabbed the new tube packet and thought to myself, "I can do this, I can do this". Syringes the balloon saline out...now it's ready to be pulled out. Nah....nope. Couldn't do it. I totally chickened out. I added new saline to the balloon and figured that I was going to work that blockage out. I suctioned and added warm water...for god knows how long but me with my Italian stubbornness, I got the blockage out! Whew...I got another few weeks of relaxation time before his button needs replacing...I think I'll let the doctor do it.
So as I was saying, this is the start of Feeding Tube Awareness Week. It's to...well...raise awareness. To educate people that feeding tubes are to help. Before Kenny, I had no idea what a tube feed was...the thought of putting a hole in my sons belly and supplement his feeding was catastrophic. I felt guilty that I wasn't doing my job as a mom. He wasn't eating for me and I couldn't comprehend how he went from kinda eating a half jar of stage 2 baby food to not even wanting that. How even a spaghetti O would make him gag and throw up. Why wouldn't my on eat. We were in feeding clinics, occupational therapy and still...age 2...he couldn't chew or swallow without gaging and vomiting. It was finally time...after months of putting off the feeding tube talk, his doctors felt that for his brain to grow and for him to finally start thriving, he needed a tube. They also told me that this was very common in micro preemies. I did everything I could to try to feed him and I was getting upset and wold cry every time I tried to feed him. So The summer of 2010, my son went into surgery for his life saving feeding tube. I was scared to death. It was yet another first that Tony, I and our families have experienced with Kenny in our lives. Thank goodness I had some good friends online who's children had feeding tubes. It has been difficult at times...those nighttime feeds still suck rocks, but the weight has been lifted off my shoulders. He has gained weight and this year has been the first fall/winter that he has not landed in the hospital. I have gotten much support from Facebook and the friends online. Learned tricks of the trade, dos and donts, and felt that we are not alone. We are hoping that one day he will eat enough to be rid of the tube, but in the mean time extremely grateful that we have been blessed with our special needs child and all that he has exposed us to.




Tuesday, February 5, 2013

At five in a half...and all is going well!



Finally a doctor appointment for Kenny where he's doing good!!!
He hasn't gained any weight, even with the tube feeds and eating more and more...but we're working on that.
His coloring has gotten much better than that yellow hue he had...which i have cut out all of his baby food. He is only eating the foods we eat. I cut everything up small and bite size for him. hes been enjoying spaghetti/pasta, hot dogs, pudding, dry cereal, mashed potatoes and he even has actually tried a Popsicle!!! Four months ago, he wouldn't even attempt to try something cold! he has helped me bake a cake with Gina...and loved being part of doing something hands on. He has been interactive playing more and more with his sisters and brother too. I am so relieved! Yay for Kenny. Man is he a lot of work..all the tube feeds, feeding him (like a 9 month old because he just can't quite figure out the spoon/fork to mouth thing yet), diaper changes, medicines, and everything else, but it's finally starting to pay off! He has not had a hospital stay for a serious sickness since the summer...and THAT is a small miracle in itself
He does have to see his neurologist for some questionable issues (jerky movements at night, fists curling inwards, eye crossing inward and some clumsiness, but we will worry about that road when we cross it. Today I am just very thankful that he is doing well!


Friday, January 25, 2013

Dance, dance, dance

Kenny surprised us with actually watching tv...and better than that, he started to copy the dance moves to the Wiggles!

Sunday, December 23, 2012

A pre Christmas present for mom...

With only a few days left before Christmas, our house has been anything but quiet. Gina and I have both been sick so Tony has been doing much of the shopping. Trying to get baking, cleaning, shopping and wrapping done while sick...not that easy. The other day as I was laying on the couch pretty much suffering from a horrible sinus infection, Kenny wanted his shoes on. He was in my feverish face signing "shoes"...nonstop. When that didn't work, he went and grabbed his shoes and threw them at. I told him that he didn't need to wear them and I wasn't going to put them on him and put the shoes on the floor. The next thing I know, my little man, the one that doctors told us may never walk, is putting them on himself! THATS MY BOY!! I am so very proud of how far he's come and what he is doing for himself these days! Three years ago he surprised us with walking...now he's putting his own shoes on! God really has blessed us!


Tuesday, December 11, 2012

Our Christmas Card done...Check!

Well, I finally did it....a little late...but none-the-less, I ordered our family Christmas cards. I always have used Shutterfly so I am just sending a little shout out to Shutterfly for a great selection (as always) and also for Pampers Gifts to Grow...yes, I still have a trillion points from when the kids were younger and it just so happened that I used a little of the points to order the cards...YAY ME!
As with the prior years, I was starting to have a hard time fitting everyone in the picture...in our small living room (by the tree), so I opted for a different venue this year...outside at a town square that was decorated very cute! Now, as you can see, there was a little interesting change to the pictures this year...I now have full blown teenagers (dun...dun...dun...) so a certain someone wasn't too thrilled to pose this year. Ya know what I have to say about that? Pthhhhhh! tee hee.


http://share.shutterfly.com/action/welcome?sid=0IctmjdmzZsXkw&cid=SFLYOCWIDGET

This holiday season has been a little crazy, so I will be posting later tonight as to all that's been going on here at the Tomecko house.



Thursday, November 22, 2012

Thanksgiving Eve 2012

   
Cupcakes delivered for a thanksgiving order (with extras going to different clinics/areas of MetroHealth, for my thanks to them for caring for Kenny),


 bread cut for stuffing,

  8lbs of brussel sprouts cut and ready to be cooked...chocolate and pumpkin pies are next. I give thanks to God for giving me this wonderful...but extremely trying life. My friends and family that I don't always get to talk to or visit (thanks to this trying life)..you all have been...are...and will always hold a special place in my heart for one reason or another. And all that I have. It may not be much, but I feel blessed none-the-less. So to all my friends, God bless you all on this very busy and happy Thanksgiving Eve.

Thursday, November 15, 2012

Heavens special child (and more)

A meeting was held quite far from Earth
"It's time again for another Birth"
Said the Angels to the Lord above
This special child will need much love
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From folks he meets, way down there
He may not run, laugh, or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content;
Please Lord find the Parents who
Will do a special job for you
They will not realize right away
The leading role they're asked to play
So with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privilege given
In caring for this gift from Heaven
This special child so meek and mild
Is "Heaven's Very Special Child".

(Author unknown)

November 17, I will be wearing purple in honor of my children...of whom all were born early between 34-36 weeks...and my twins who were born at 23 weeks gestation. I miss my Nicholas with every breath I take...but am so grateful to God and Nick for watching over Kenny whom I am sure has his twin as his guardian angel. This picture was taken the first time I held Kenny...over a month after their births. I was so scared to hold him for fear that he too would get sick and die. He looked right at me (I was a crying mess) as if to tell me that everything would be alright.
Even after long days like today...doctor, specialists and therapies...colds, medicines and feeds...I feel truly blessed. Yes, I get frustrated, scared, lonely and sad at times but I know I can handle it. Gods got my back on this!

Wednesday, November 14, 2012

A crazy dream

Figured I better write this dream out...we've all had one. The kind of dream that wake you up from a deep sleep and sticks with you for hours throughout the day. Yep...

I'm driving our van with my oldest daughter, Taylor in the second row of seats. It must have be winter but there was no snow on the ground. The streets were slightly slick with some black ice in some areas. Well, I came to an intersection and stopped at the red light. When the light turned green, I hit the gas but the van wouldn't go. The tires started spinning on the ice. I tried and tried to make it move forward, but it wouldn't budge. Finally after a few minutes the tires grabbed the street and we started moving. As we were driving, I had to get around this older, grey haired gentleman in a small compact car which matched his hair color. So I sped up and all of a sudden, I lost control of the van. We started to spin. I tried to regain control, but the van wouldn't stop spinning. All of a sudden, I got sucked out of the window. Somehow I managed to still hold on to the steering wheel for dear life. I was screaming to Taylor to please make sure she has her seatbelt tight and to brace herself for the crash. I was scared to death because I knew I was a goner, but I didn't want to leave my kids. I was loosing my grip as the van was really spinning. We just missed hitting the guy in the little car and the velocity of the spin was winning the battle of me holding on. I kept thinking of Taylor in the van alone. Thinking about if she was going to get hurt when the stopped spinning and crashed into something. Thinking about what Taylor was going to witness when I go flying out the car. I didn't want her to be sad, scared or anything bad. I just couldn't hold on any longer. I was slipping, crying and kept telling Taylor that I loved her...then I lost my grip. I felt myself being sucked out of the van and thought "so this what it feels like when there is a car accident and you hear that someone is "thrown from a vehicle"...and now I'm one of those people.
I woke up before hitting the ground.

Yeah...scary and extremely disturbing.

So all you dream interpreters...let's hear it. I pretty much know what this dream is about...and it's pretty freaky how ones mind can take what your feelings...emotions and actions and turn them into such realistic and quite haunting dreams.

Friday, November 9, 2012

The ocean of grief

Those of you who have experienced a death of a loved one can relate to this chart I posted. From my own personal experience, grief comes in waves. I want to compare it to the ocean when the tide rolls in and out to sea. Some days its deep with no place to look at the beauty of it all, while other times there is so much to take in. To walk clear and free from the currents that can pull you under. Where you see all the beauty the ocean has and how small and relaxed one becomes. I've been at the lowest, sucked in and lost out at sea. Not relating to others, feeling lost and angry and just sad. I went through every emotion imaginable...sad, angry, scared, sick (like...literally sick), desolate, tired, guilty...you name it, I've felt it. Its no wonder that I lost many friends along the way because of my grief. Some people can't and won't be subjected to such sadness...sometimes it can be pretty pathetic. Many people don't know what to say, so the best thing they feel to do...the only thing some people know how to do, is back away. It's a very lonely place of losing a child. What does one say to a mom who is mourning? There is only so many "I'm sorrys" one can say without sounding generic. When a mom is in the throws of grief, only they can come to terms with it. It takes time, patience, understanding and love. We love to talk about or have someone mention our babies that have gone before us. It solidifies that our child will never be forgotten. Now, I think, after 5 years and dealing with PTSD...and the grey hairs that have magically appeared on my head...thank you stress haahaa...I'm finally coming out of it and it feels like a breath of fresh air. It took five years to get to the point where I am at now. Missing my baby boy still very much to this day. Wondering what he would look like, his interests at age 5. If he would be like Kenny. Just missing what he could have been. All the milestones we never got a chance to experience...I can honestly say, yes I have my bad days...days of crying for him, but I have more good days now. I can talk about him, go to his grave without crying (most of the time) and look at pictures again (ok..those are a little tough on me)...but I feel like the fog is clearing and I am living again. Who knows, I may fall back down to a low because that's how grief works, but I now know that things will get better. A piece of my heart will always be missing, but I know Nicholas wouldn't want me to be sad for too long. Today...I am ok...I.am.ok.

Thursday, November 8, 2012

Kenny has adopted a little buddy...

Kenny has adopted a baby. He was carrying around his older sisters American Girl doll (or rather, Generation Doll) and while at a school function, a very sweet schoolmate of my girls offered her American Girl twins (a boy and a girl). She gave them to him last week and he hasn't parted with this little guy since. I even added a G-tube to him and made a backpack to "hold his feeding tube stuff...like Kenny has. He takes him everywhere...doctor appointments, to school, the store, to bed...he holds him, feeds him, gets a diaper changed when he gets his changed...and when he gets his feeds, meds and breathing treatments, the baby also gets them. I never thought my little guy would be able to relate to a doll or even know what to do with one. The way he looks at this doll is total love. He loves being a "daddy" to a little baby boy with the same issues as him! He has hit that next level of developmental play and I love it. I am going to be getting/making hearing aids for him next! I am in awe of how far Kenny has come from that one and a half pound, half baked little guy that beat the odds!

November is Prematurity Awareness Month

I am the mother of a premature baby. 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.

When you are the parent of a premature baby your whole world will stop. You will be told your baby won’t survive and if it does it will have lifelong health issues. You will be told it 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.

If your blessed enough to make it home with your baby, you will know way to many medical terms that no parent should ever have to know, you will know how to work an apnea machine, give infant CPR, you will learn sleeping doesn't exist because alarms go off all night long. You will be overprotective and overcautious because you know how close you had come so many times to losing your baby.

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.

Tuesday, November 6, 2012

A day that started bad and just got worse

It all started when I woke up to a cold house...and since we were just without power for 5 days, cold isn't one thing I like too much anymore. I tried adjusting the new thermostat...nothing. I went down the basement to check the furnace...nothing. It wasn't working! So at 6:30am, I was calling the 24 hour hotline explaining the conditions of our chilly home. Guaranteed to get someone out to look at the problem.
Got the girls off to school came home and picked my hubby, Kenny and Gina up and went to vote. After that, we wert tothe grocery store to stock up on 10 for $10 products and oh...we scored big with canned veggies 20 for $10. Came home to drop off a very busy hubby. We then went to Kennys doctor appt...
For weeks we have been noticing how yellowish-orange kenny's skin has been turning. I just though that because he's been eating so much baby food that has carrots in it, that it would clearly be the reasoning behind his Oopah Loompah coloring. But being kenny and a Tomecko, our luck isn't the best...now were not too sure.
As I had him at his comprehensive care appointment today, they were checking him over, they (his nurse practitioner and his nutritionist) did not like the fact that he was so yellow, lost some weight and has been having diarrhea. They were talking about his liver, absorption of something and vitamin A...something or other. Yeah, everything just started to sound like blah,blah,blah..ugh. She also wants to keep an eye on his one...uh...how shall I put this...testicle. It keeps slipping up and not descending like it should. Now...being a mom and female, I honestly didn't know those things move up and down...ewps. So now we have a bunch if new worries for me to deal with. What else is new. I am hoping that the weight loss is from the lack of pump feeds due to our power being out for 5 days...yes, five days of a dark cold house with nowhere to go or nothing to do...it really puts into perspective how much we rely on technology...for everything! Thanks to some good friends, we had nice hot dinners and even a good nights sleep in a warm house after 3 nights of sleeping in an icebox we call home. You had to have seen all of us...walking around the house with flashlights and bundled up in layers which included gloves and hats...hey, it sort of worked. So yeah, hoping and praying it's nothing more than just cutting out dome of the stage three foods. I being honest and saying I'm quite scared.
While I was on my way home from the appointment and racing to the girls school to pick them up, my husband calls to tell me not to get upset...i freaked out and asked him why and he went in to tell me that the neighbor that I so graciously like (not), the one that asked if he could cut the branch that was hanging over his house...which, by the way, was about 5 ft. Long and 2" in diameter. We told him to go ahead to only take the part that was hanging over his house off because it was a huge branch that was a major branch to the tree...our tree. Well, the neighbor ended up cutting the whole huge branch off...in one large whack. And would you know that not only did he cut way too much of it off, it also hit my house! Not the end part of the branch...noooooo...that would have been much too easy on this day from he**. It was the wide part of the branch...which was at least 12" in diameter and 20 ft. long! Took out our siding, window frame, shutter, decorative retaining bricks and my outdoor electrical outlet which was part of my house! The hole that the limb made in my house was so deep into the wall that it broke and pushed the inside wall apart! I am just thankful that we weren't home and in the house when it happened and that no one got hurt. My first reaction is anger...and yes, I did kinda get mad at the idiot of a neighbor, but then I thought that it was just an accident, it could have happened to anyone...well, anyone that tried cutting down a huge main branch without any prior tree cutting experience. So now it's all in the insurance company's hands. We had damage from the superstorm and now we have even more damage from my neighbor.
So as you see...today had been extremely stressful. I can lay here and dwell on the negative or I can take my Nyquil and pray that whoever gets voted into office that they take great care of our wonderful country and the people in it. I have so many friends and family that need prayers because of illness, a death or other issues, that this stuff is just that...stuff. Things that will eventually get fixed. As for Kenny, he has proven himself over and over...just keep him in your prayers.

Monday, November 5, 2012

Born too soon


World Prematurity Day falls on Nov 17, and this is an opportune time to heighten awareness of the dangers associated with preterm birth.

PREMATURE infants, also known as preemies, come into this world earlier than full-term infants.

A normal pregnancy lasts for approximately 40 weeks. Preterm birth is the birth of a baby occurring before 37 completed weeks (less than 259 days) of pregnancy.

They look different from full-term babies, and find simple things like feeding and breathing difficult.

There has been significant progress in the care of premature infants, but not in reducing the prevalence of preterm birth.

Preterm birth is among the top causes of infant deaths worldwide. Every year, about 15 million babies are born prematurely – more than one in 10 of all babies born around the world.

Newborn deaths – those in the first month of life – account for 40% of all deaths among children under five years of age.

Prematurity is the world’s single biggest cause of newborn death, and the second leading cause of all child deaths, after pneumonia.

Many of the preterm babies who survive face a lifetime of disability.

Preterm babies have a higher risk of complications that could lead to death within the first year of life. Their lungs and digestive systems are often not fully developed, and they face a higher risk of brain damage.

These premature babies have not had time to grow and thus they have a low birth weight (birth weight below 5lb 8oz [2.5kg] is defined as low birth weight [LBW]; weight below 3lb 5oz [1.5kg] is very low birth weight; and weight below 2lb 3oz [1kg] is extremely low birth weight.

Common danger

A common cause for infant mortality due to LBW is Respiratory Distress Syndrome (RDS), which may involve atelectasis (collapsed lung or lungs), hypoxaemia (low oxygen absorption), and high carbon dioxide levels.

Approximately 50% of the neonates born at 26-28 weeks’ gestation develop RDS, whereas less than 30% of premature neonates born at 30-31 weeks’ gestation develop the condition.

In RDS, the infant’s immature lungs do not produce enough of an important substance called surfactant.

Surfactant allows the inner surface of the lungs to expand properly when the infant makes the change from the womb to breathing air after birth.

The lungs start to make surfactant only later in the pregnancy, thus, preemies are not able to keep their alveoli open as well as full-term babies. They have to work very hard to fill their alveoli when they breathe, and do not get enough oxygen to their bodies.

Fortunately, RDS is treatable, and many infants do quite well.

Symptoms of RDS include:

*Bluish colour of the skin and mucous membranes

*Brief stop in breathing

*Grunting

*Nasal flaring

*Rapid breathing

*Shallow breathing

*Shortness of breath and grunting sounds while breathing

*Unusual breathing movement – drawing back of the chest muscles with breathing

Investigations for RDS include a blood gas analysis (which will show low oxygen and excess acid in the body fluids).

A chest X-ray will show a characteristic “ground glass” appearance in the lungs, which often develops six to 12 hours after birth.

Treatment for RDS includes respiratory support and early administration of artificial surfactant.

Babies with moderate to severe RDS may need help breathing or oxygenating their blood.

Respiratory support often comes in the form of a nasal cannula, continuous positive airway pressure (CPAP) or mechanical ventilation.

Babies with severe RDS can be given surfactant directly into their lungs, to help the lungs stay inflated while they mature.

Can RDS be prevented?

If premature delivery is unavoidable, then steroids given to the mother before delivery can help a baby’s lungs produce surfactant. Steroids work best when they are given between 24 hours and seven days before birth.

RDS usually develops shortly after birth while the baby is still in the hospital. If you have given birth at home or outside a medical centre, seek emergency attention if your baby develops any breathing difficulty.

Other complications of premature birth include:

*Heart problems – The most common heart problems premature babies experience are patent ductus arteriosus (PDA) and low blood pressure (hypotension).

*Brain problems – Risk of bleeding in the brain.

*Temperature control problems – Premature babies can lose body heat rapidly as they don’t have the stored body fat of a full-term infant, and they can’t generate enough heat to counteract what’s lost through the surface of their bodies.

*Gastrointestinal problems – Preemies are likely to have immature gastrointestinal systems.

*Blood problems – These include anaemia (body doesn’t make enough red blood cells) and infant jaundice (baby’s blood contains an excess of a yellow-coloured pigment of red blood cells called bilirubin).

*Metabolism problems – Abnormally low levels of blood sugar (hypoglycaemia).

*Immune system problems – An underdeveloped immune system, common in premature babies, can lead to infection.

Long-term complications

Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by injury to a preemie’s developing brain, either during pregnancy or while the baby is still young and immature.

Premature babies are also more likely to lag behind their full-term counterparts on various developmental milestones, due to impaired cognitive skills.

They can also suffer from vision, hearing and dental problems, as well as behavioural and psychological problems, and chronic health issues.

Another cause of concern for premature babies is Respiratory Syncytial Viral infection (RSV).

It is so common that most children have been infected with the virus by age two.

However, infection with the respiratory syncytial virus can be severe in some cases, especially in premature babies and infants with underlying health conditions.

Although there’s no vaccine for RSV, there is a protective medication, palivizumab, which can help protect children under age two who are at high risk of serious complications when they get the infection, such as those born prematurely, or with congenital heart or lung disease.

When the pregnancy test turns positive, thinking on how to prevent having a premature baby is not at the top of a new mum’s to-do list. However, planning for a healthy pregnancy is an important part of being an expectant mother.

Many causes of pre-term birth are unexplained and unknown. However, there are many risk factors that increase the chances of babies being born early.

The risk factors for premature labour include:

*A previous premature birth

*Pregnancy with twins, triplets or other multiples

*An interval of less than six months between pregnancies

*Conceiving through in vitro fertilisation

*Problems with the uterus, cervix or placenta

*Chronic conditions like high blood pressure and diabetes

*Smoking cigarettes, drinking alcohol or using illicit drugs

*Mothers under the age of 18 and over 30 years have a greater risk of going into labour early

*Being underweight or overweight before pregnancy

*Lack of prenatal care

*Poor nutrition

*Some infections, particularly of the amniotic and lower genital tract

*Multiple miscarriages or abortions

*Stressful life events and physical injury

Safe motherhood begins before conception with good nutrition and a healthy lifestyle. With appropriate prenatal care, the ideal result is a full-term pregnancy and the delivery of a healthy baby.

The postpartum period in a positive environment will support the physical and emotional needs of the mother, baby, and family.

The birth of a premature infant is a journey few are aware of unless they are faced with the overwhelming experience. The joy of giving birth is challenged with helplessness, often coupled with fear and guilt.

Researchers are investigating foetal programming – the way maternal stress, nutrition, health, or illness experienced during pregnancy, affects offspring from infancy through childhood and into adulthood.

It is very important to provide pre- and post-natal healthcare, education and nutrition to women who otherwise have little or no access to these types of services, to help them understand pregnancy and infant care.

This Nov 17 marks World Prematurity Day, and it is a great opportunity to connect globally and heighten awareness of this important issue.

Let us ensure that no family endures the traumatic and life-changing experience of having a premature or sick baby, without easy access to critical information and community support to help them through their journey.

As a sign of support, do set your Facebook status to read “I am supporting World Prematurity Day – 15 million babies are born too soon every year” on Nov 17.