Monday, May 30, 2011

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 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. 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 way! So, the saline was put right back in the hole to refill the balloon! I'll save it for the doctors to 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 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 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, 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 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!

Sunday, May 29, 2011

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 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.

Tuesday, May 17, 2011

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 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 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!

Monday, May 2, 2011

Happy Birthday to Kenny (and Nick in Heaven)

Happy Birthday to my beautiful 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 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 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 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 could he survive? 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 had to be done. I was now the mommy of twin boys. 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 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.

Sunday, May 1, 2011

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 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 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!