Tuesday, April 28, 2009

Almost a diagnosis

Today has been one of those days that have been very emotional for me. With Kenny and Nicks birthday quickly approaching, my daughters communion (on the same day), the stresses of every day life with a small house full of kids, and finally going to Comp Care today for Kenny. I am almost at my wits end. You know, as a mom, you can fix a cold, a broken heart, a boo boo...but when it comes to some of the diagnosis' that they are thinking that Kenny has, I cant fix it. I am only human. I WANT to make Kenny all better, but I cant. It makes for a very sad and drained mommy who feels inadequate right now. I want Kenny to have a normal life...be a teenager, go to dances, dates, girlfriends, college, great job and wife and kids eventually...but I just don't know if that will happen.
Kenny was "unofficially, officially" diagnosed with Autism and Cerebral Palsy. He has that, and then the whole chronic lung disease, hearing loss, speech delay, feeding issues (throws up with anything solid or lumpy), unable to walk (but the doctor did tell me that he feels he will eventually walk...its just gonna take a long time), and acid reflux...not to mention, we have to get his eyes re-examined soon. I am at a loss for words. I can just imagine what Nick would have been like if he were to have survived...Kenny didn't have any brain bleeds but had MANY infections and other problems....I I just feel horrible that Nick would probably have been a vegetable. DARN life. I am trying to see why this is happening...I just want some good news for Kenny for once...I really want something specially good happen to him...
What is life going to have in store for Kenny? I guess only God knows. I am going to do my best to help him....but I feel myself backing away emotionally from him, I don't want too, but m y defense mechanism has just kicked in...I just love him soo much and I just want him to be alright. I don't want to lose another baby. It's a very scary feeling.
We put Kenny in his walker, but there is barely any room for him to move around! I hope this Toddler program will help him...again, feeling bad that I cant do it all for him.
Ok...now that I have totally wrote out my feeling for today, I am going to take a long hot bath and soak my worries away.

Sunday, April 26, 2009

The Perfect Day

We had an awesome time yesterday meeting everyone at the Middleburg Heights Kmart where Kenny is the Ambassador. They were just all so very nice to all of us! And the store spirit they have for raising money for the March of Dimes...just top notch! You can tell that the March of Dimes really means something to all these people. I am so very happy to have met them all and have these people in our lives! Again, thank you for everything you have done.

This morning at the walk was just as great! We met a lot of people and just had a great time! The day started off....well....actually...last night when I stayed up and packed the diaper bags, gotten extra clothes and made sure all the shirts were done. I then got on line and printed the online March of Dimes donation page. This morning I woke up at 5, made sure the last minute stuff was set, woke the kids and hubby up at 7 so we could be at registration at 8. Believe it or not, we got their at 8:30!!!! Remarkable for us because we are always late for everything!!!We met up with Kathy and the great people from Kmart (whom we met yesterday). It was so nice seeing everyone again! Took tons of pictures and then the walk began!

We walked, and walked and walked and walked....ummmm....no one told us that there was a short route....oh yes...we walked 4 miles!!! It was very long but tons of fun. I am very proud of my kids who didn't even complain once about walking!!! We saw the Cleveland Browns stadium, the Rock hall, Quicken Loans arena, the building with the big Stamp...so many things that we wouldn't of even seen if it wasn't for the walk (mainly because of...well...7 kids, need I say anything more. LOL)

Anyhow, Great time, great walk...very emotional for me...I cried and found out that my mascara is NOT waterproof! I know that this is something that we will be doing every year. It is so important to let everyone know how a premature birth affects a family. Babies dying everyday because they were born too soon. Children who were born too soon having disabilities and health issues. It hits home for us.

This is why this all happened. We would never of met so many people whom we've had the honor of meeting...from the nurses/doctors in the NICU, Kenny's PT/OT therapists and everyone who works with him, to all the great people from the March Of Dimes and Kmart!

It was a day that I didn't worry about money...I didn't worry about having to do this or that...I didn't worry about every day life stresses or anything. I did think of what Tony and I have been through in these 11 years of being parents to 8 beautiful children. What it has shaped us into as a couple, as parents. Our losses AND our miracles. The smiles on our kids faces and being able to tell people about Kenny and Nick and have them know what we have been through and are going through...

I know Nick was walking with us today...I felt him with us. Today was a perfect day!

Thoughts of walking today

I wrote on my Facebook that 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!

Saturday, April 25, 2009

March of Dimes weekend is here!

Just a few quickies....
This weekend is going to be a busy one for us! Today we are going to be at the Middleburg Hts. K-mart to meet and greet the employees. We are going there to thank them for all their fundraising that they have done for the March of Dimes and to tell them our story...to show why they raised the money! It is going to be very fun and emotional because I will be telling them about our hardships and triumphs!
Tomorrow will be the March for Babies walk! We started the fundraising late, but still collected more than we thought we could raise. Thank you all that contributed!
Kenny is now suffering from an ear infection. I really thought that he was banging his head on the floor and walls for no other reason than to just inflict pain on himself...I really though that he would have to wear a helmet so he wouldn't hurt himself until my sister told me that head banging could also be a sign of an ear infection...so off to the doctor we went...I really think the peds office is getting sick of seeing the Tomecko family! LOL! Anyhow, sure enough...ear infection! Started him on antibiotics ans hopefully we wont be seeing too much of the head banging....I swear...he's got a big black and blue on his forehead from banging it on the tile and wood floors!
I want to switch gears here and ask that you all please say a prayer for the Freemans. Their daughter Kayleigh is not doing very well. Please pray that a miracle will happen, as it has in the past for their baby, and if it doesn't happen, please pray that they have the strength, courage, love and guidance from God to get them through this. You can read what they are going through on their blog...
We have been there...know what they are experiencing and feel very bad that they have come so far, and now this.
So please pray.
Thank you all so very much!

Friday, April 17, 2009

Coughing and March for Babies!!!!

It's been a week from Heck! Kenny has not stopped coughing...he's been getting around the clock breathing treatments...which means lack-o-sleep from Tony and myself. I had him at the doctors office a few times last week and this week because I am getting paranoid about his cough and fever. It's really taking a toll on me. Emotionally I am a mess. Kenny is very sick, there is nothing I can do for him except try to keep him comfortable with breathing treatments and hugs. How much more can my little guy handle. His lungs are so bad. He was supposed to start school on Thursday, and he cant even do that.

I just want to know, are their any other micro preemie parents that are going through this? The doctors all told me that his lungs will get better as he gets older....but it seems like it is just getting worse! Not to mention, Gina (who is a 36 week-er) has bad asthma (brought on by RSV) as well...breathing treatments and everything!
We have tore out the carpeting, got rid of the dogs, I clean, clean, clean constantly...but there is only so much I can do. I cant replace the rotted wood on the outside of the house, I cant replace the broken windows with the mold in them, I cant get rid of these ants that every year infest my house...I cant replace out furnace to put in something that would be more healthy for the kids...I cant but the kids in their own rooms...to keep germs away....it's just not going to happen. The Economy is kicking our butts, family who don't feel that we should have so many kids and their own opinion on OUR life, is very upsetting, especially since we have done nothing wrong to anyone! We have been trying to get this video made for Extreme Makeover Home Edition, but because of Kenny being sick all the time, we just cant find the right time to do it....let alone find someone to do it for us (we don't own a digital video camera).

We do what we can do. Yes, I'd love to have a bigger home, new clothes for my kids and ourselves, new....well...everything....but honestly...does that really matter in this lifetime? We teach our kids right from wrong, show them love, have as much fun as we can with them, and still have to take care of a chronically ill/disabled child. It is very emotionally, physically and mentally hard.

Please God, help our family out. The Birthday of Kenny and Nick is fast approaching...it should be a very happy time for us...it is...yet I am still feeling the guilt of not being able to keep them in for just a little longer. Maybe Nick would have lived, maybe Kenny wouldn't have any problems. I am trying to sit here and wonder what on earth did my husband and I do wrong in life to have such stress on us (emotional, financial, medical...just everything)...while other people have it so easy. I am still trying to find the meaning of all of this. I miss my Nick with all my heart...I shed tears every time I think of him. I am thankful for the memory of being able to hold him, kiss him, smell him and talk to him....but I am being selfish and wish he was here...growing up with his twin brother and playing with his sisters and brothers.
We are working on our shirt for Sunday's walk for The March Of Dimes....The front of the shirt is going to look like this..
If any one would like to donate to Team Tomecko for the March of Dimes....the link is:


We are really looking forward to this weekend! Thank you everyone who is supporting us..

Wednesday, April 15, 2009

Kenny is home

Sorry I haven't gotten around to updating all of you....its been one thing after another! Yes, Kenny is home. He still has the RSV/pneumonia but is finally starting to feel a little better. He is getting breathing treatments every 3 hours or else he goes into these coughing/wheezing fits. He is still not eating really well (he wasn't eating great before, but now if anything with texture goes into his mouth he pukes). I am kind of ticked off at the hospital that they discharged him when they did. I think a lot has to do with the medical coverage he has. Not to mention that I couldn't get to the hospital on Monday because my cornea tore from my stupid dry eyes and scar tissue from previous abrasions...can you say "OUCH"?! Anyhow. He was crying and not a happy camper at the hospital so when I did get there (my older sis drove me), they told me that he was ready to go home. Kenny has a ng tube in, the IV, and he had this bad rash all over him. But they said that he was going home! The nurse came in (after Kenny had an explosive diarrhea all over me) and I asked her why was he going home and that I didn't think he was well enough to go home...she told me that she didn't understand why he was going home either...um...hello!!!!So, whatever...he is home...he is miserable but he is home and I can take care of him. We have his oxygen, his breathing treatments and phone numbers to doctors and the hospital...oh...the hospital did set us up for a visiting nurse for 3 visits! They were more concerned with his developmental delays and my support network...again...hello...I know he is extremely delayed (the PT/OT put him at about 9-12 months of age)...I am extremely sad over this and wish I can shake him into being a normal 23 month kid, but I cant. I am doing my best as a mom and human being. He is in PT/OT/Speech therapy/feeding therapy what more can I do? I freak out every time he gets sick because I sit and wonder if this time will be the time that he dies because of his lungs...it FREAKING SUCKS. I am scared for him.
Anyhow...to make a long story short, he is home. Gina has a double ear infection AND an upper respiratory infection (RSV again), and now Kayleigh was up all night with a 103.4 fever, coughing and just miserable. Our night was full of breathing treatments, children's Tylenol/Motrin and baths...no sleep...I'm tired and very stressed but I am grateful for all of you that have said prayers and thought of Kenny. Thank you so very much.

Sunday, April 12, 2009

Happy Easter (in the hospital) UPDATED

It all started a few days ago with this cough that wouldn't stop, no matter what we did. Yesterday I finally told Tony that we needed to take him in to the ER. I took Little Tony with me because he wanted to be around his baby brother, while Tony held the fort down and for the first time EVER did Easter eggs with the girls...I mostly have white eggs! LOL!!!

Anyhow, we got there and they took him right back, because of his history. He had a fever and was pulse ox-ing in the lower 90's which wasn't too bad. It was the cough that they didn't like. So after being there for 3+ hours...he had a triple dose of Albuterol, steroids, Motrin, chest x-ray, IV put in (for antibiotics and fluids), they wanted to keep him because they saw a spot on his lungs that they are pretty sure that it is pneumonia. They also did a nose swab because they are not ruling out RSV...so...we shall see. On a good note, the nurses totally remember Kenny from the previous stays and there was one nurse that remembered him from the NICU! He has made THAT MUCH of an impact on people! This is not the way I wanted our Easter to be. Trying to make Easter as normal as possible for the other kids yet be there for Kenny. I guess we have to get used to the fact that the "normal" for us is what it is...hospitals, breathing treatments, worrying if the next time Kenny goes into the hospital, if it will be life threatening because of his little lungs. It's a very scary feeling...the not knowing...but I guess that this is our "normal".

Please have a very Happy Easter and spend time with family and friends...enjoy one another and be there for one another to celebrate life and everlasting life.

Here is Kenny in his room...Little Tony took this on my cell phone so it's blurry and not the best picture of the Ken man...He actually kind of looks like Macaulay Culkin in Home Alone! LOL!

UPDATE: We could use as many prayers as possible. His fever is over 103, his urine output is not that great and he is still coughing very bad. I am very worried about him. Please say tons of prayers that he pulls through this. They are saying that it's pneumonia and RSV. Please, please pray for a good outcome. I am very, very worried. This Easter has not been very nice for us or for the kids. we've all been very worried about our little guy.
Thanks again.


Monday, April 6, 2009

Please pray for this family

I was going to start this post off with talking about how Kenny and the kids were doing, but I just found out that a fellow preemie blogger's family just lost their sweet baby girl Madeline Alice Sphor at just 17 months old on April 7th 2009. Please say a prayer for her parents and family that she leaves behind. This just shows you how fragile our micro preemies really are. She was fine one day, and then the next, she had a cold and her oxygen sats were dangerously low and then the following day she passed away... am at a loss for words. Such a beautiful little soul inside and out. May God watch over her parents/family during these very hard days ahead of them. The family is asking to please donate to the March of Dimes in Maddies name.

Here is her website:

Everyone, please don't take life for granted...its a gift from God. Love one another and cherish every moment big or small that you have with your loved ones.

Kenny just got approved to attend the Toddler Program run by the County Board of Mental Retardation and Developmental Delays. He will be starting on April 23 and will be going 2 days a week from 10 in the morning to 4 in the afternoon. I know it will be great for him, but I am scared about him getting sick or...well...missing me me missing him! They are going to give him so much more therapy for those 2 days then I could ever do here at home by myself. We had his 6 month assessment the other day. This is where we compare him to what he was and what we wanted him to accomplish in those 6 months. He has for the most part, accomplished quite a bit! We are still looking at him being behind developmentally...like...way behind. They have him at 9-12 months of age in his development, but with the help of him being at the school, we are hoping that he starts to catch up. Gina is doing things that Kenny just started doing not too long ago...but I am getting a new attitude through all of this...I am going to put my faith in God (which I haven't done very well in the recent past) and just go with it. I am going to do all I can do to give my kids a wonderful, happy, fulfilled and complete life. We have been through more than most people could even imagine, and yes, I was feeling sorry for myself...still so at times...but you know, God gave me 8 beautiful children and a great husband and family...I feel very blessed for that. We are put on this earth, faced with things that only we can/must work out for a reason. I really feel that having all these kids, losing Nick and the 2 miscarriages, having Kenny with the problems he is facing and will be facing, the financial difficulties from this poor economy and anything else...is just to make me a stronger person. A more sympathetic and understanding person that is not so into the wants as much as the needs. I want to be able to help other moms/dads who have had preemies and losses. I want to tell them what to expect, that it is OK to ask for help and to ask tons of questions to your doctors. Having a micro preemie (or even a preemie) doesn't just end after the NICU stay...it is a full time job...heck...having 7 kids is a full time job with overtime! I hear that sticking with something and following what you believe and feel pays off in the end~!

On another note...

Kenny has been waking up half the night with coughing fits that last a long time. We have been giving him his Zantac but I really think that it is more than just reflux. He's probably getting sick again...UGH! This is the first month since his last Synagis shot...I am SOOO holding my breath on this one. Last year, he got RSV and was hospitalized a month and a half after his last shot...I really don't want to go back to another hospital stay. It's bad enough that a couple of weeks ago, they wanted to keep Kenny over night because of his bad cough/wheeze he had.

Kenny is doing much better in his walker. He has finally mastered getting around...albeit, he is lazy while walking...more less goes limp and lets his toes push him around...but it's a start! Now if I can just find the room to have his walker AND Gina's walker in the house...they are playing bumper cars like crazy with those things!

So as I close this post, I just want to again tell everyone to PLEASE, love one another, make each day special and dont take anyone or anything for granted. Life is precious and fragile.
This prayer was posted by Shydub @ the blog, Simple Happy Life...I just found it so perfect for this whole Easter Season...
Jesus my Lord, let me strengthen my courage by taking on the courage of all those people who have been "centurions" for me. Many have faced disasters and hard times with great constancy. The upper hand of evil never turned them against you. They kept going. Let me be like them, Lord. No matter what the cross, let me never stop declaring you to be "truly the Son of God, the source of my hope, the reason why I will never quit on life.

Wednesday, April 1, 2009

Kenny is on his feet!

Yesterday Kenny got his Gait walker. We are hoping that this will help him realize that his legs are there to walk and stand and to also strengthen them. I was so excited for him because he can be a little bit more independent than just crawling...he can be like the other kids and walk around. But I was also kind of sad because no mom wants to see their child have to struggle to learn something. I am so grateful to God for giving me my little miracle and I know there is a reason for everything that has happened...Maybe its to see that materialistic thing really DONT matter on this earth, or to not take people for granted, or...well...I really don't know. All I know is that I never in a million years did I think I would have a child who has so much going against him, yet he is perfect in every way! Even waking up every night, every 3-4 hours to give him his breathing treatments, fighting with him to keep his hearing aids in his ears, struggling every meal time to get him to eat something, anything, and now to try to learn to walk (at 23 months old). Its hard, very hard. I don't think people realize the extent of emotions ranging from happiness, gratefulness to stressed, sad, scared. I still wonder what the future holds for Kenny, but I am trying not to dwell on it. He will be the best he can be just like all my kids will. They will know right from wrong, work hard and try to succeed in everything they do...and if they fail, then I pray that they will pick themselves right back up, dust themselves off and keep at it until they succeed and are happy. I want them to have a love and closeness with their family, friends and God. Ah...so before I go on and on...I'll end it here and save it for another post!