Dream Night At the Zoo

Dream Night at the Cleveland zoo...what could I say? Simply perfect? How about...forever grateful as well. Every year since Kenny has been born, we've been invited to attend Dream Night. It is for kids that have chronic illnesses and their families to just be kids for once. It has been such a stress relief for our family. We laughed, we enjoyed, and the kids pigged out on all the zoo favorites (cotton candy, pretzels, iccees, ice cream). This year...Kenny and Gina really enjoyed the animals. Kenny loooved the tram and the fire truck...I think a little more than the animals!Daddy had fun showing him all the animals...

I got some great pics of all my kids too!

I love this one...notice the cross in the picture!

I thank God for the opportunities like this, that are given to our family...and to all the other families like ours. It makes me happy to see all these wonderful families having a great time, knowing that they are in the same medical uncertainty, day to day life that we are in.

I don't know what the future holds, so that is why we take it day by day...just like the NICU life, but carried on to our home life. I am stressed beyond belief with everything and wish he didn't have to be so sick with so many problems...but...he has shown people that life is a gift and is what you make of it.

Sure, I am stressed out and exhausted taking care of a special needs child...I cry a lot...I wont lie about that, but there is a reason why he's here (which for all medical purposes, shouldn't be from such an early delivery)...and I strongly feel that because he is here...I will be a huge advocate and parent to parent "friend" to those who are just now entering the whole new Preemie/NICU/palliative/special needs life.

Taking it day by day

The last two weeks have been pretty tough...ok...so actually...this whole "ever since the kids got out of school" has been tough. Doctor appts, husband busting his butt with work, kids fighting (one with ODD), Kenny screaming constantly, and then the deaths of my good friends little boy(almost 4) who had Mitochondrial disease and a micro preemie mommy's little one, Dominic, that was born at 22.2 weeks....fought to live since March...and couldn't fight anymore. It just seems like we are just going through the motions of each day but not living them. We haven't had a break to just have fun, relax and just breathe and I am starting to feel the effects of it all.

Last week, since we couldn't physically be there for my dear friend on the day they had to bury their precious son, we went to he cemetery (where Nick is at) and had a balloon release for ZachWhen we got there...it was 1:11... this is one of "those" numbers that whenever I glance at a clock or whatever, it is either 11:11 or 1:11...so...I just knew that Zach and Nick were together watching!My kids felt very bad when they heard that Zach had died...they wanted to do something for him...and this was something that we could do as a family. (Hubby was taking the pictures...which is why he wasn't in any of them...love ya sweetie...thanks!)...And there they go...up to Heaven!

My heart breaks for the pain that my friends are going through. I pray that everyday brings just a little bit more healing...but I know the emptiness...its so raw. Please keep all parents who have lost their little one in your prayers.

And of course I had to get a picture of my boys. Look at those handsome kids with those smiles! God, I wish Nick was alive

So anyhow...

We took Kenny to the Cleveland Clinic for a second opinion neurologically. I had his huge binder with all of his medical records and I even had a copy of his MRIs. It was a completely different setting than MetroHeath....which is a great hospital in itself (my opinion). You can tell that it was a richer hospital...I mean, instead of paperwork, they now give you small computers to walk around with, fill out and give to the doctors/nurses. I thought I was in a different country! haha. Tony dropped me off because we had no idea where to park...I walked in and it was like walking into an airport terminal...huge..and they even had a waterfall and a stream in the middle of the lobby! I walk Kenny to the elevators, go to the pediatric neurology dept. and sat and waited...and waited...and waited. In that long hour of just sitting there, I'm looking around at all the parents and their kids. They were of all races, ages and backgrounds but one thing in common...all of the parents had that same look on their faces. The look of worry and stress. How can I be sitting here with all of these other families? My child never had a brain bleed...just really early...he should be fine and catch up, right? Ah...the million dollar question...he should catch up.

...Oh...they called our name...time to go in. Weight...30 pounds, height...39 inches ("oh he's tall and thin", the nurse says). Then the questions...Allergic to anything? Illnesses? What meds is he currently taking? We finally get in to see the doctor. He looked over the MRI, talked with me for a while and then looked at Kenny. He was very open and honest with me about Kenny. He told me that he sees this a lot with micro preemies...the tight muscles, the nonverbal, etc. I asked him what he thought of his microcephaly, small cerebellum and arachnoid cyst and he told me pretty much what Kenny's neurologist told us...that it happens. With an older preemie, they know the outcome of different things...but with a 23 weeker, they are still finding things out. Like even though there is no sign of brain damage on an MRI, it doesn't mean that there isn't any. These doctors are treading water with all of these preemies, unable to give substantial and point blank diagnosis because they just don't know. The medical field is just now seeing the results of being born at 23 weeks in the kids that actually survive. There is a HUGE difference in a 23 weeker to a 24 weeker in terms of survival...and I am just now understanding that. When I tell them that Kenny is a surviving 23 week twin, they are simply amazed.

The doctor told me that the small cerebellum and cyst is common in kids with developmental delays. I then asked the question that has been haunting me..."Isn't developmental delays a kind way of saying that someone is mentally retarded"? The answer...YES. UGH...my heart felt like it broke into a million pieces, and the tears started to flow. How can my child be mentally retarded. no..No...NOOO!!! I want him to be normal. I want him to go to school and have a girlfriend, get married, have a family of his own and a good career. He so badly deserves the best in life...not a label of this! I know I am being politically incorrect by calling it mentally retarded, but honestly...a delay would be that he'd catch up...they just told me that he will always be half of what his age is mentally! These are just my raw feelings and I don't mean to offend anyone. See, no doctor had the balls to call it what it was. No doctor sat with me and just talked to me like a mom of a kid with tons of health issues....until now.

So this cyst that is in my beautiful son's brain...its fluid filled and is fine for the time being...that is, until he starts to get headaches. OK...so my son cant talk, he tries his hardest to communicate, has a super high pain tolerance...how the heck is he going to tell me that his head hurts? He already bangs his head and screams almost all day long...so that is not a way to see if he's hurting...so, back to the drawing board on this one. We'll just have to keep an eye on it. If he starts to get headaches, then operating will be the next move.

So we are going with a few different diagnoses: Epilepsy, developmental delayed (mental retardation), mild Cerebral Palsy, mild Autism (somewhere on the spectrum), Microcephaly, Cerebellar Hypoplasia with an Arachnoid cyst...all brain stuff.

Followed by: Chronic lung disease, Gastroparesis, an immune deficiency, etc. etc.. etc...

What it really means is that my son is special. He may need a little bit more help to do things...but he is here and here for a reason...and doing pretty good for a 23 weeker, I might add. All these stupid diagnoses do is worry and upset. I hate it but I know that in order to get the right therapies and help, I need to know exactly whats going on.

I am finding out that this whole being a mom thing is pretty tough but worth every second!

It takes a lot of energy to take care and raise one child...but 7 and one with special needs...exhausting and there are no breaks. There is always some new challenge...always a new worry...a worry different from the normal family life.

Its all just a day by day life I guess.

Never take this day...your husband...your children...your life for granted.

Not broken but whole

God, you sent me for them to be...
with all that there was, for me to see.

A family for me, that could take care...
with the many things they had to bear.

this family you have completely entrusted
for Your plan would never be maladjusted

The love, so much love, for me have they...
to share it and honor each blessed day.

You gave up so much for me these past years...
Helping me through ones biggest of fears.

Knowing that my time is full but short...
they'll need all the love, hope and support.

Its not easy to let go of one so soon...
For sadness and sorrow, they are not immune.

This is why God has chosen you for me...
to be amazing parents for all those to see.

Its much easier here, I have to say
no more pain or sickness...I can play all day.

I know it is hard, these days seem so bleak...
God chose you for this knowing you are not weak.

So thank you, oh thank you for being the best
You loved me enough to see I needed a rest.

Please know that I will always love you...
I will be waiting in Heaven with wings I just grew.

You love me so dearly, body and soul...
I am with God now...not broken, but whole.

Written by: Michele Tomecko

This is for my dear friend, whom lost their little boy (Kenny's age), Zach to Mitochondrial Disease this morning. He spent all of his (almost 4 years) fighting this disease. He was in the hospital more than he was at home. My heart is breaking for this amazing family. They have been through what most people couldn't and yet, their faith is stronger than ever.
She has always been there for me through everything I have been though with Kenny. She has encouraged me to go to the next step with whatever I had to do for Kenny. Has always been there when I was feeling down about Nick...and I love her with all my heart and soul. God bless the Moody family.

Dreaming of tomorrow

Sitting here this morning and thinking about everything that has been going on these last 5 years. Thinking back to how an event in one's life could change the course of everything. Be it good or bad, big or small...it happens all the time. I went through the what ifs, the anger and the sadness. The sadness is mixed in with frustration and at times shows its ugly head. I think that's where I am now. I am frustrated at how I want Kenny to communicate yet I know he is trying his hardest TO communicate. I get frustrated with the doctors because they are telling me things that I know, but no one is sure what's really going on or what will happen in the future. Sure, I know that no one is a fortune-teller, but for me...and for this sadness/frustration part of me, I NEED to know what we are in for.

My dear friend and her family have a child Kenny's age who has Mitochondrial disease...I'm sure you followers that have followed this blog have heard me talk about her in the past...well, they have come to the part of their journey where they have their beautiful son in hospice. They threw a celebration for his birthday (which is in July) yesterday because they just don't know how much longer he will be here on earth. The pictures that were and have been taken are something that is short of breathtaking. Their faith...truly amazing...and their love for their children shines like the brightest rainbow over a lake! I love to write, but as I write little messages to her on FB...I have no words. I just want to hug her and tell her that she is the best mom ever for giving her child the best life possible...even with all the hospital stays, meds, wires/tubes AND the unknown. I've been where she is. Sure, many will say that losing a newborn is not like losing an older child..."there isn't that bond, the memories, etc"...but there IS. I may have only had 2.5 days with my son, but I will have a lifetime with the emptiness that he has left in our hearts...the place in our family where he was to fit perfectly. God bless them.

Friday I went to the hospital with Kenny to get his hearing re-checked for new hearing aids. He is a little older now, so he is more responsive to the testing. Which in turn, makes it more actual as to what he can and cant hear. And sure enough...he is still at the severe level. Since losing his hearing aid at Sydnies communion (through an autistic fit), he has been using only one aid. He will continue to use one until school starts and then, we will see about a new set for him. We are trying to get the kind that will fit a personal FM system right to it. It will be great in group settings (school, or even here at home), so he doesn't get all of the garble of many people talking at once. Anyhow, after that appt., I needed to get a copy of his medical records and a copy of his MRIs for a second opinion at the Cleveland Clinic. I love what Metro has done for my son, but I think I need some reassurance that we are doing everything possible for him. I want to make sure that we are not over looking something. I just want to be sure. I guess I am also wanting some validity as to my feelings of frustration and sadness as well.

I hate the fact that every time we (Tony, myself and the kids) go into a store and Kenny starts with his extremely loud vocals...no, he doesn't scream and cry (well most of the time anyhow) but he is exceptionally loud...to the point of, if Tony or the kids separate from Kenny and I...they'd be able to find us very easily...heck, even if they went outside of the store, they'd be able to know what store we were in. The looks and stares we get from people...its almost funny. I think we should make a sign that reads...forgive my son, he has autism and is deaf (on top of many other issues)...whats your problem! I think that will get people thinking and stop judging. We also get the people who come up to us and bless us...not just for having lots of kids, but for raising a son with "special needs". Sometimes I want to scream and yell (yes this is the sadness and frustration part of me kicking in) that what I deal with on a daily basis is NOT EASY. I don't want peoples blessings or sorry eyed looks at me...telling me that God only gives those special parents, special children...I don't want to be that "special parent"! I want to be a normal parent who doesn't have to give meds throughout the day, who doesn't have to give tube feeds, who doesn't have to worry about tomorrow, who doesn't have to "live each day like it was the last". I want to be able to go on a vacations with my husband and all my kids for a week or even a weekend so we can regroup and get refreshed from the everyday stresses that we face. Stresses of having a child who cant tell me whats wrong scream and cry for no apparent reason...all day long, every day. Stresses of Gastronomy tubes that when hooked up, leak stomach contents for almost an hour into a backpack worn by a child...only to be noticed when I go to see how much longer he has on his feed...yeah...it wasn't a pretty picture. Stresses of having a child run off and be scared of losing him somewhere. Stresses of several meds all day long, every day. Stresses of wondering if this or that is normal or when his next seizure will take place...and will I/we be ready (emotionally and physically). I want to be a normal parent. I want to have a normal, not sick child. I want to have a normal family and not get so worried about a million things. I don't want to have memories of watching my son die in my arms or having to bury a child. I want all this but know that it is a far cry from reality...

So If I seem a little stressed...its because I am. If I seem a little sad...well...it comes and goes and I will be fine. I trudge through each day...not having time to worry about petty things that happen in life.

I didn't want any of this, yet it is who I am now.

Bowling for the first time

A few weeks ago, Kenny's school had a field trip to the bowling alley. I was apprehensive about this because I wasn't sure how he'd react to...well...bowling. I kept going back and forth on taking him or not taking him. I finally talked to his teacher whom told me that it would be really good for Kenny to go. He would be around his peers, he would experience something new...so..needless to say...we took him! It was the best thing we ever did. At first he was confused. He didn't want to be put down and was very scared. He wanted to go to school, not some other strange building... When he saw his teachers and friends, his face brightened right up! Look at the smile he had on his face when he saw his teachers.... He started to bowl like an old pro after a couple of turns/pushes with Daddy's help...

The teachers and parents were telling me that even though in Kenny's class there are kids with disabilites, Kenny is protected by ALL the kids. They tell the teacher when his feeding pump is beeping. They worry about him when he is not in school. They help him with certain play times, and they make sure they get Goldfish crackers for snacks (when its their turn to bring in snacks) because its the only thing that Kenny will eat. Notice the little boy holding Kenny's hand...I just love his class and teachers! Gina even had a shot at bowling. She LOVED it.

So after we got home from the bowling field trip, Gina decided to find a black marker and do some fancy artwork on herself...LMBO! I also want to share a couple of pictures that I just love. The first one was taken at Kayleigh's field trip to a park. It was hot and after a long morning of playing, the kids took a break. They sat in the shade and listened to the story, Horton Hears a Who. This picture was just perfect... And then finally...My goofy Kenny. He got this shirt for his birthday. Perfect!

I have to do what?!

Hmmmm...where should I begin. Ah. I guess I'll start from the beginning.

It has been 7 months since it was changed...no one told me that it had to.

All those hospital stays and doctor appts with me asking about it, and they all fluffed it off like it was no big deal.

This last doctor visit, I mentioned it to his doctor. He said that it was rather easy to do at home...but if I felt more comfortable, I could bring the replacement Mic-key button and they could show me how...its not like they didn't show me how when he first had it put in. I figured, why wait when I can do it at home. I can do it, I can do it (famous last words). I looked at Tony and asked him to help me through this. Yes, the guy that wont get any blood work done because he doesn't like needles, but also the guy that has seen the insides of my stomach from a peek over the curtain from my c-sections.
I gathered my courage...took the syringe and sucked out all the saline from the balloon holding the tube in...and tried to pull the tube out. UGH....it was stuck. I didn't want to pull too hard, I might break something! ACK! Oh this is so disgusting, I thought to myself...oh wait...I clearly remember me yelling this out loud with Tony holding Kenny as a just-in-case! Noooope...couldn't pull it out. My hands were clammy, my stomach churning a little...I can do most, but to pull out that is sticking in my sons stomach...no way! So, the saline was put right back in the hole to refill the balloon! I'll save it for the doctors to do...at a later date!

as the day was going on, I kept looking at the g-tube that was sticking out of my sons stomach. It was discolored and old looking. Thinking to myself, "that cant be good for him to have in for so long...what happens if it causes an infection...and all because 1) I didn't know it had to be replaced every 3 months...and 2) I didn't have the guts to replace it myself." What kind of mom am I? I couldn't take it anymore. Between making dinner and cleaning up the house after two toddlers, one of which has my dining room chairs lined up, all my canned goods grouped and lined up in various strategically placed areas of my house (steps, living room, dining room, on the deck outside, on the lined up dining room chairs...) and the toy boxes...er...scratch that...toy (clothes) baskets dumped in the living and dining rooms, I decided to get a set of...well...something girls don't have...and change it! I put on my medical gloves and took a deep breath. Took Kenny's shirt off and syringed the saline out (like before). I thought...ok...here comes the hard part...I looked in Kenny's eyes, he was looking at me so trusting. I told him that I loved him and that I would never hurt him and then I did it. I pulled it out. IT WAS SO GROSS! there...I said it! I wont lie. haha. It was coated in brownish yellowish gunk and then...there was the hole in my sons stomach! uuuuugh. What was I doing? OK, OK...no time to be thinking...just do it! I got the new tube out of the package and inserted it into the hole...I didn't realize how bit the hole was, its the diameter of a pencil eraser! So I inserted the "peg into the hole" that's what it felt like to me...and filled the balloon up with the saline.

And that was it! I did it, I actually did it! Kenny was the greatest. He just laid there and let me do what I had to do. I am so very proud of my son! Heck, I'm pretty proud of myself! From almost a year ago when I was so afraid of this whole g-tube thing...to this, switching his g-tube...I know its not that big of a deal for those of you who have kids with g-tubes, but for me, it is an accomplishment.
I have overcome my fear of this whole g-tube thing!

Tired and exhausted from "special/chronically ill needs".

Sitting here chillin after a very trying morning.

Kenny is sound asleep after me having to hold him from screaming, crying, banging his head and pretty much not caring if he hurts himself. No, it wasn't a typical temper tantrum that he was having...it never is. They're not caused by anything in particular...they just happen. Usually from either being over stimulated or when his routine gets interrupted by something that doesn't usually happen...He has Autism...and these tantrums are autism meltdowns. We got the diagnosis a few weeks ago along with a few other things. The day finally came a few weeks ago...the queasiness that I've had for weeks prior. Knowing that there was something they saw on the MRI and us wanting the Neurologist to explain everything...the time finally came. The doctor was very thorough with everything he was telling us. He told us what we already knew..that Kenny does in fact, have microcephaly. He also has a very small cerebellum.

He went on to explain, that, because his cerebellum is so small, his balance, muscles, speech, feeding issues...basically...the input to output process is affected...all of this is affected. On top of the small cerebellum, he also has an arachnoid cyst (which is basically filling the area where the regular sized cerebellum should be...just picture an area where there should be a baseball...and instead, there was a golf ball with fluid all around it...yep, that would be pretty much what is going on inside Kenny's brain. The doctors are keeping an eye on everything and of course he has to go back in a month. What scares me the most is the fact that he didn't have this cyst on the first MRI but then it showed up on this latest one. We are also dealing with the fact that he does have mild Cerebral Palsy (which I already knew).

We are also facing the issue with his immune system and the genetics team found something with 17p13. So we will be going to his Immunologist this coming week and the Genetics specialist in the near future.

It just seems like so much for such a little guy. Right now, he is sitting on me calmed down. I am thinking about getting him a weighted vest or something. I feel like I am going through this completely blind. Like I'm forgetting to do something or that I'm overlooking something so simple. He's in speech therapy, Occupational therapy and physical therapy, several meds a day for different issues...from epilepsy, slow emptying stomach (GERD), lung meds for his lungs, feeding tube for his feeding issues...what more...what else? Do we get him an Ipad with all of its apps that I've heard nothing but great things about? I dont know. I wish I did know. Its one diagnosis after another when I just wanted to have healthy twins. I just want him to be a normal, healthy kid. I dont want him to be this way. I know he's happy and doesnt know any better...but I do. And I'm sad for him at times...but then, on the other hand, I am so proud of him and what he has accomplished.

In a world so quick to judge, we have been hit with such a blanket of issues. All of which affects everyone in our family in many different ways. I am so lucky to have a great support system of family and friends. I am blessed to have an amazing husband who has walked the same walk as me...all the while...hold my hand. We've cried, laughed and become closer than ever because of...well...this life that was given to us. What has happened and what will happen...we will conquer together.

...but boy could we use a little breather.

God bless Sydnie...

This month of May is turning to be one of the busiest months ever! We started off with the March of Dimes walk, then Kenny & ^Nicks^ birthday. Followed by last Saturday's Communion for Sydnie. It was beautiful. Everything turned out perfect! All the hard work that Sydnie did these last few weeks in learning her petitions to read during mass and the songs really paid off. The dress...very pretty. My daughter...beautiful! Who would of thought that a clearance dress from Sears would look so beautiful...and of course...the headpiece that I made for her. I am hoping she will want to wear it for her wedding...just like the rest of the girls headpieces that I've made for their communions.

The only downfall to the morning was my attempt to do my daughter's hair for the day. I had every intention of making her hair perfect...haha...and...it didn't happen. Thank God I have a niece who does hair for a living! She got to our house (from Pennsylvania) at 9 am (keep in mind, we had to be at the church at 9:30). She worked her magic and it was beautiful!

We got to the church just in time for pictures and then the mass started. Little Tony (my son) was one of the servers...he looked so handsome up there on the alter. The communicants walked down the the isle...and yes, it brought a few tears to my eyes. Sydnie said 2 prayers petitions like a little pro! She stepped up to that podium, pulled the mike to her mouth (alittletoclose), and spoke loud and clear...hand gesture at the end and all. Very proud mommy moment!

Afterwards, we celebrated with a big reception/birthday party at our house.I made my famous salad...followed by sweet potatoes, sauerkraut and sausage, turkey casserole, chicken and ham...I made tons of cupcakes...filled with chocolate mousse...We also bought a couple of cakes for the occasions. Kenny wasn't his usual self. He gets like this every once in a while. He was extremely crabby with throwing a huge crying...no...screaming fit at home and at the church. He then fell asleep in church during mass. When he woke up, he was pale and lethargic. He didn't want any part of playing, laughing or even walking. I was actually pretty upset over him.He did love on all of his baby cousins though....We then sang Happy Birthday to him...yes...he is wearing his Birthday shirt that I made him. Sydnie cutting her communion cake...Oh! I know what I forgot to add...The day before the communion, Sydnie asked if she could get her ears pierced. Kayleigh wanted them too. So, guess what they did? Sydnie didn't cry one bit, but Kayleigh...because she had two people doing it, she got a little scared and cried afterwards. Thank goodness buying her a little something stopped the crying ;)

And now its like second skin to the two of them. Of course I had to document the occasion with snapping a few pics.

I feel so blessed with such beautiful kids. We had a beautiful day...and no, not everyone showed up...but that's alright. It was a blessed day...a day to celebrate our faith with our family. We shared love, laughter and had a great day!

Happy Birthday to Kenny (and Nick in Heaven)

Happy Birthday to my beautiful twins...to my beautiful little fighter!

Its been a long and emotional 4+ years. So much has happened...much more than most would even care to think about happening.

Four years ago at 10:29 & 10:30 my babies were no longer in my womb. I could not protect them, feel them move inside, or have dreams of taking my twins to Twins Days or wonder what 6 months of being pregnant would feel like. No...four years ago today I would give birth to two very perfect and very real baby boys...just way too early. Picture their heads...the size of a clementine (small orange)...their fingers...smaller than macaroni, their hands so small...they couldn't wrap around our fingers...eyes and ears still fused shut...yet...their hearts were beating strong and they were perfect...perfectly ours.

In these last four years, I have felt more pain, more heartache, cried more than I have ever cried in all my life...I can clearly remember what I was doing four years ago...at this very moment (May 1st, 10 at night), I was crying and it was late. I was on bed rest in the hospital and I was extremely emotional...I knew I was going into labor. There were no contractions showing up on the monitor, but I knew something was happening...The nurses sensed that I was scared so they called the neonatologist in to talk to me. He was tall with an accent that I couldn't quite place yet I was holding onto every word he was saying for encouragement. He started off by asking me how far I was...then he stopped for a moment and reached into his coat pocket for a piece of paper with a bunch of writing all over it (must have been his cheat sheet for me...I thought to myself). He went onto explain all the statistics of having a baby at 23 weeks gestation...which were itself pretty grim...but then add twins...especially white and boys and you got yourself a recipe for disaster. After he asked if I had any questions...and me crying even worse than I was before...he left me alone to sit in solitude and think about what I knew was going to happen...and soon.

I fell asleep only to wake in the morning before rounds. I made my way to the only time I was allowed to get up...the bathroom. That's where it was...I knew I was in trouble. Do I call the nurse on the rope line they have in the bathrooms in the hospital...yes...I called the nurse...she came in and I told her what was going on. Yes, I lost all pride and did not care about anything at that point except saving this pregnancy. I called my husband to come as quickly as possible to the hospital...wow...he got their fast! it was only two hours after my bathroom discovery of blood that my doctor who came in and checked me...calling for the ultrasound machine right to my room...we discovered that Kenny's foot was already in the birth canal and I was a good 4cm dilated. My doctor was calm cool and collect, but I sensed that this was not a good thing. He kept apologizing to me. I called my mom crying and telling her that I was going in for a c-section...the twins were coming. I was so scared.

On the operating table I went. My arms were tied down and the panic started in. I felt the need to get up and run. I went into a panic attack where my doctor and the nurses had to calm me down. Tony then came in. All I saw was the scared look in his blue eyes behind the mask on his face. How could this be happening to me? To us? We're both twins...we were going to have twins. My dreams of getting fat with this pregnancy...even getting stretchmarks for the first time! It wasn't fair...I wanted and welcomed the bad side of being pregnant with twins. I wanted to protect my babies and to feel them moving inside...Nick on my left...up towards my ribcage and Kenny on my right...closer to my side, almost towards my back. Oh how I can still, to this day, remember perfectly how it felt to have two babies inside of me...so strange but so perfect!

And then it happened. 10:29 Kenny was born...oh...was that a teeny tiny little cry that he let out while they whisked him away so very fast? My sweet baby Kenny! I saw just a quick glimpse of him as they walked by me...oh my gosh...he was so tiny...how could he survive? Then...at 10:30...Nick was born. He was quieter than Kenny was but that was to be expected. I never got a chance to see him being taken away. In the recovery room, I was greeted by my husband, oldest sister, my good friend and our priest. And all I did was just sit there. I had no words. I didn't want to pray. I didn't want to talk. I was numb. I wanted my babies back inside of me where they should have been! When they got the OK...our priest went with them and baptised my twins. I honestly wanted to be there, to see it...but I knew this was the right thing to do..it had to be done. I was now the mommy of twin boys.

Yeah...so you see...I remember this day like it was yesterday...a very bittersweet day for me that is slowly becoming better. I cry on this day for what shouldn't have been...yet I thank God for giving me my twins...even though Nick is no longer here.

These last four years Kenny has shown us that he IS a fighter and he is here for a reason. It hasn't been an easy journey but its our journey to travel. I am honored and blessed to have had the opportunity to experience being a mommy to twins (even if it was for just a short time) and raising such a perfectly imperfect little survivor! You have both shown me to love, live and help others, just that much more in my life. Kenny, you have shown me to take things day to day...to be grateful for every beautiful day that we are together...learning something new, or just sitting quietly together. Each day is a gift from God...even on the bad days when I want to run away from the medicines, the therapies, the hospitals, the being scared...your smile, your hugs...and yes...even those darn cans you so perfectly line up everywhere in the house. Happy Birthday to you Kenny & Nick. I love you heart and soul from here to Heaven. I wish things were different but God has his plan in place.

Kenny's 1st birthday...Kenny's 2nd Birthday...Kenny's 3rd Birthday...

Happy Birthday Kenny!
Happy Birthday Nick!
I am so very proud to be a mommy not only to your sisters and brother, but to an angel and a miracle...I am truly blessed.

Today...we walked for babies...for miracles...

Yes, its been a crazy whirlwind of a last few weeks, months...ahhh...heck...years! I've been unsure about many things. Been unsure of Kenny's health. Unsure of decisions that we've made. I've even been unsure of my own sanity...haha...but one thing I haven't been more sure of...walking for the March of Dimes!

We walked this morning for our children, our miracles...and our angel, Nick. We walked for all the brand new mommies and daddies of preemies...babies born too early or born with defects.We had a great turnout! I want to thank those of you that helped with donating to our family team...we raised over $500!!!! I was up til 4 am working on the T-shirts...but it was all worth it!This is the whole team...Team Tomecko...minus the ones that did donate but couldn't walk with us!

It was chilly and slightly damp (drizzle), but it was perfect!

I was trying to think of the right words to say about this whole day...and honestly, this post from 2 years ago really says it all...

Thoughts of walking today...dated April 26, 2009:

I am sitting here this morning, in this quiet house (believe it or not), thinking of the reasons why I am walking this March of Dimes walk today with my beautiful family. It makes me sad that our little guy, Nick wont be walking with us....and this is the reason WHY we are walking. No parent should have to go through what Tony and I have been through these last 2 years. No baby should die of prematurity. No baby should have problems because of prematurity. You know, when I thought of having a premature baby waaay back when I had Tony....my water broke at 29 weeks and ended up keeping him in till 34 weeks...and I thought THAT was early and that HE was SMALL (4 lbs. something oz...), I was scared to death for him. He was fine...well...for the most part. He had to learn to suck, but that was about it. Same with all the other kids...yes, Taylor and Morgan had a very touchy go at it at first, but they were good size and gestational age...then I go and have Kenny and Nick...All I have to say is that it took away part of me, of who I was. After them, I was aware of how fragiler life is....I mean....REALLY fragile! Babies are a gift from God! They ARE a miracle! When I had Gina....at 36 weeks....and VERY healthy I might add...I see what a difference just a few weeks make in a baby's development! From having many 34-35 weekers to Gina at 36 almost 37 weeks....she is so advanced, loves to eat, actually a big baby! So this is the reason WHY we are walking today.
We are walking in memory of Nick...Nick, mommy loves and misses you so very, very much. We are walking in honor of Kenny, our little miracle born 17 weeks early...pretty much the earliest a baby will be able to survive outside the mommy. We will be walking for Tony, Taylor, Morgan, Sydnie, Kayleigh and our healthiest, Gina. We will be walking for all the new mommies and daddies who are living the same nightmare that we lived, in the hospital...bed rest, babies born too early, the whole NICU roller coaster, prematurity, death, and what is to come for the surviving preemies. We are walking in memory of all babies that just couldn't fight anymore, walking for the doctors and nurses that they will have the knowledge and resources to save those born too early... and that one day, ALL babies will be born healthy!