Picture, picture who's taking the picture

Its that time of year that we Tomecko's take the famous "all kids smiling at the same time...with no melt downs" picture. My thought process to planning "the family picture" is no thought process at all! If I sat and said..."guys, on such and such day we are going to take the Christmas card picture" it would never of happened. So, one day after school, while all the kids were in good moods...I sprung it on them! Announcing to them...OK everyone...go get something nice on...were taking the picture! And believe it or not, they all did without any hesitation! I snapped one picture...hmmm...wasnt bad at all. All the kids were smiling and looking at the camera...lets take a few more just to make sure. At that point, I was trying to dig into frozen ground...it just want going to happen. Gina decided that one picture and one picture only is what she was going to sit through and smile for...Kayleigh wanted to lay down on her stomach for the rest of the pictures, and the older kids (Tony, Taylor and Morgan) were fighting over who was going to be holding Kenny....so, the one and only picture that they sat through was the keeper! I actually (and so do the kids) look forward to this annual event that I have quickly made a tradition for the kids and I!
Oh...and gone are the days of cute Christmas sweaters and matching outfits...yes, I was told by my teenager and preteen daughter that they don't want to look stupid anymore. Time to take them (the sweaters, not the kids) to the salvation army store!

And the finished product...our Christmas Card? Ahhh...I think I will hold off with it until closer to Christmas. I don't want to give anything away ;-)

Wow...what a Saints Museum!

Oh I know...where have I been? These last few weeks have been crazy busy...mixed with a little bit of holiday sickness. I've been slacking in terms of this blog. Sorry. I wanted to do a big 2 year Anniversary of my blog post but...between cooking for Thanksgiving, my hubby's Birthday, sick kids (and adults) and a mountain of laundry...I just couldn't. So, today I am here to write about what was missed for the last 2 weeks...I have decided to break this up into a few different posts!

We have had this sickness in the house ever since Halloween (you remember, the one that landed Kenny in the hospital)...yes, that one. Its been one runny nose, fever, headache, coughing mess around here. One has it and no matter how many times you wash your hands, sneeze into your arm, etc...it is like a chain reaction and gets passed around. Tony and I even got it...and my husband NEVER gets sick. A week later and we're still coughing!

The Junior High classes at St. Francis put on a Saints Museum.When we got there, We were welcomed to Heaven! There were statues and memorabilia of the saints along with what the kids were...live statues and angel escorts. When you press a circle on the paper in front of them, they are to "come alive" and tell the person standing there about themselves (er...I mean, the saint that they were dressed as).

Tony and Taylor both told me they needed costumes...Tony needed an angel costume and Taylor told me she needed a costume that looked like The Weeping Madonna of Syracuse...The best I could come up with for her was sheets. Honestly, its the only thing that looked original. And oh...thank GOD for Halloween for the Angel stuff! Then....you get poor Morgan who LOOOOVES dogs, but the allergies are way too much for her. This is just from only a few minutes of playing with a few dogs....

Poor thing lasted a few days like this...even with Benedryl!

Motivated Monday

Its the Monday before Thanksgiving and I already have the tree and some of the decorations around the house up...wow! I figured that since in this house, there is just a small window of opportunity from the time of clean and decluttered to messy again that I would take it as a perfect time to get the tree up...and I did! Very proud of myself, I must say! My next step is to get the kids all cleaned up for my annual family picture that I take of them...that may be a little tougher. I have to find just the right time to get that picture between colds, naps, fights and baths...haha. I have also promised my kids that this year they wont have to wear matching holiday clothes...only if they want...and so far, the older one just roll their eyes at me...so I guess that's a no. haha.
As you all may have guessed, Kenny is home from the hospital....11 long days in there. Much of it was for the virus he had, but there were 3 day in because they had to test him for reflux (in which he has been on meds all his life for)...turns out, he does not have reflux just the slow emptying stomach. I was kind of ticked off that they had him on reflux medication all that time without them doing this simple test that could have easily have shown that he did not have it. I am beyond happy that he doesn't have it though! We are trying a new feeding regime to see if the throwing up stops, and so far, it is really working! We had to switch around feeding times, give him less Pediasure and start him on Boost Essentials. So keep those fingers crossed that this is the right piece to the puzzle for him! He is getting sick again. Yes, again. Seems like no matter how much we try to protect him, it does no good (For this reason, we will be trying again next year for EM:HE * PLEASE SIGN THE PETITION AND JOIN OUR FACEBOOK GROUP*) So, here we go again...holding our breaths and hoping for a non eventful runny nose.
Today we start back up on Kennys OT at the hospital...we shal see how that will go...update to follow...

*be thankful for life, health, family/friends, strangers that you meet along the way, and every moment that is given to you.

Prematurity Awareness Day (a day late)

So I'm a day late on this post...my post about Prematurity Awareness Day!

Speaking from much experience on this topic...I have to say that I am very passionate about this day. All of my kids were born premature. I'm not talking a week or two...Most of my kids were born at 34 weeks gestation I had one born at 35 and Gina made it to 36 weeks...but the hardest was my twins born at 23 weeks gestation...a whopping 17 weeks early...yes, that is almost a whole half a pregnancy outside of me. I barely had time to enjoy being pregnant with twins. I felt them kick for just a few months...maybe. As you all know by now, Nick passed away while Kenny spent 129 looooooong days in the NICU at MetroHealth Medical Center here in Cleveland, OH. Even now, the struggle isn't over. He has over come many obstacles but has also spent a lot of his 3.5 years in the hospital for one thing or another.

Having a child early is scary for anyone. Getting educated on it helps but it doesn't make the whole experience pain free.

I had all of my kids early due to a bicornuate uterus...in other words, my uterus is shaped like a heart so it doesn't hold a pregnancy very well. I have had 3 miscarriages because of this. I was told that there was a great chance that I would never have kids because of this...and look at me...8 kids (7 living, one in heaven) later, I have proved "them" wrong. Yes they were born early because of this, but with great doctors, a great hospital and the right care I was able to have my family that I always dreamed of having! Tony and I regret nothing! We have had 8 beautiful children when we were told we would have none.

My preemies have all had different outcomes when they were born. Sydnie and Kayleigh were born early because I went into premature labor...dilated and all...but it was a blessing in disguise. You see, the two of them were born with true knots in their cords...unbeknown to the doctors, so being born early actually saved their lives. They both spent a week in the hospital for small issues then they came home. Taylor and Morgan...when they both were born, had more severe issues. Morgan was born not breathing. She was intubated for a short time to get her breathing on her own...and Taylor fought months of respiratory problems including apnea and pneumonia. Their hospital stays were slightly longer. Tony was born early because my water broke at 29 weeks gestation. I was on 5 weeks of bed rest with him. Then, because he wasn't growing anymore inside of me due to the lack of amniotic fluid, they induced me at 34 weeks. He only had to stay a little over a week in the NICU.

And the twins...well, you know their story (see birth story post)!
So you see, the beeps and alarms...the machines and the equipment in the NICU and beyond is nothing new to us. We have come very familiar with just about everything that has to do with preemies. This is why I am so passionate about this topic. Prematurity is not something to take lightly. Leaving the hospital without your baby is one of the worst feelings in the world. On top of just having a baby and all of the hormones that come along with it...then you get the baby blues about 3 days after...on top of having your baby that should be at home with you, but instead, is hooked up to monitors and machines, makes it even more hard on a new mom. Either having to stay at the hospital (in a room they provide), or having to go back and forth every day...several times a day...just to be with your baby...its so hard on new parents (and seasoned ones too).

You walk in to the NICU, scrub up...singing the alphabet song or something, walk in to not knowing what new machine, or new labs were ordered for your baby. for the real small/sick ones, no touching them because touch can cause pain. Only looking through a incubator wanting to touch...just one little touch to make sure that it was real...having a baby...this baby! You sit in the rocking chair and talk with the nurse who has been taking care of your baby. The big binder of all the stats with measurements, meds and the weights of the dirty diapers is located on the shelf close by. All the information on your baby...right there...in that binder.

When the time comes for your preemie to be released its such a happy and scary time. First is the car seat challenge. They put the baby in the car seat with the monitor on to see how they will do sitting up...if they pass, they get to come home! But first and foremost...getting a quick class in infant CPR and how to work the apnea monitor, oxygen (if needed) and/or any other equipment. You sit and wonder...omgosh...how the heck am I gonna remember all of this? then you quietly go in to panic mode about bringing this child, whom you should be comfortable with, home with you! What happens if I forget how to do something? Oh the questions!

Finally...that day comes...for some it never happens (^Nick^), but for those lucky families that do get to bring their preemie home, its an exciting yet frightening time. There are follow up appts., home nurses, and many questions about what to do next. Every runny nose, every cough turns into a call to the pediatrician. You wake up or cant fall asleep because you are just watching your preemie breath, thanking God for the miracle that is laying in front of you. Wondering why your baby had to come early. Why your body had to fail and that precious baby that your were carrying for, dreaming of, planning things around was here too early.

In the end, it all works out. No matter if your child has a whole list of problems or comes out of being born early without anything wrong...it all works out. It makes a person stronger. To be able to talk about it and educate others...to sympathize and understand what others are going through.

Kenny and Nicks Birth story

This is for everyone that doesn't know the whole birth story.
FROM THE BEGINNING...
December 2006 we found out we were expecting...I started bleeding on Christmas Eve and by New Years Day, I thought I miscarried. I called my doctor and asked if I could come in for an ultrasound to make sure the miscarriage was over...so that is what we did. The next day, we went in...I prepared myself for seeing an empty uterus...since I've been through this before. When she put the ultrasound to my stomach, there were 2 sacks! She told us that there were 2 in there and the both looked great!

We were shocked, scared, happy...all in one! Our family of 5 kids was going to expand to 7 kids! GAH!!!! The pregnancy was quite rough since I have had all my babies 6 weeks early, due to a bicornuate uterus, my doctor from the get go was not to happy that I was pregnant with twins. He was very worried that I would miscarry them or have them way too early. He prepared me the best he could for what to expect. Around 16 weeks, I started bleeding...bad. I thought...this is it. I am having the late miscarriage that he was talking about. Turns out, there was a hemorrhage behind baby A's placenta. I was put on bed rest and told me that it would probably correct itself, since they didn't see any other bleeds on the ultrasound. We got very attached to these little guys right off the bat. They were our little miracles! To feel 2 babies move inside of me was so awesome. It was indescribable. Nick (baby A) was on my left and Kenny (baby b) was on my right. I prayed to God every night, that he would bless me with both of them making it through this pregnancy and born healthy. I talked to my boys every day and night...I told them to stay put, that mommy wanted both of them to come home and grow old with our family! When I went in for my 21 week appt. I mentioned to my doc that I was more uncomfortable and "wet". He checked me, sent me for an ultrasound and told me that I was in the hospital for the remainder of the pregnancy. My world was falling apart. How was I to be in the hospital for months when I have 5 little ones at home? So there I stayed... basically head lower than my feet for 2 weeks. I was monitored every day. There, they told me that Kenny (baby b) was now Baby A. He was breech with his feet down by my cervix. By the end of my short hospital stay, I started to feel like I was in labor...no contractions but I've been through this 5 times and 2 miscarriages, I think I know what beginning labor feels like. I couldn't stop crying, I was crampy and I had tons of...sorry TMI...discharge. I was given medicine to help me sleep and relax, but I knew what was happening. I was in labor at 23 weeks. The night before I had the twins, the nurses in the antepartum ward knew that I was extremely upset about what was happening, so they called a doctor from the NICU to come in and talk to me about what to expect. Scared the living daylights out of me! Because I was pregnant with twin boys was a negative...girls tend to do better than boys. Singletons do better than twins. If I could keep them in a little longer, that would be good...23 weekers only have a 17% chance of survival. All the problems, "what ifs", statistics and reality was just too much for me. I just cried and cried and prayed. I have never felt so alone in all my life. I spent that night just feeling my boys move inside of me and talking to them. Not knowing that that was the last night that they would be part of me, inside of me...I was protecting them, doing what a mommy was supposed to do. The next morning, May 2, my doctor came in and asked me how I felt. I told him that i honestly felt like I was in labor. I called my husband, Tony to please come be with me because I just wasn't feeling right. With my husband by my side, my doctor checked me...called for the portable ultrasound machine and told me me that Kenny's feet were in the birth canal and I was already dilated to 4. There was no turning back...He was going to perform a c-section right away. He kept telling me that he was sorry...when a doctor apologies, you know it's not good. I was able to call my mom and dad to tell them that the babies were coming, so they made all the other calls to my sisters (including my twin). At 10:29 Kenny was born and at 10:30, Nick. They both weighed 1 lb, 7 oz and were just under 12" long.


I was able to see Kenny, but they took Nick right away. I couldn't get over how small they were. I didn't get a chance to see them afterwards because I was in recovery. My oldest sister, husband and best friend were there. I was just kinda numb. I couldn't believe that they were out of me. I couldn't protect them anymore, I couldn't feel them move inside of me, talk to them to tell them that it would be alright. My twin sister did an amazing thing. She is living down in Alabama with her family. She didn't know what to do, so she called my church and asked for the priest to go and baptize the boys. So my priest was also in recovery with us...ready to baptize them and be there for me if I wanted to talk. My husband, sister, friend and priest all went to the nicu and baptised them. Those first 2 days after they were born, were really a blur. I had my daughter's communion that I was making her a headpiece for, while I was still in the hospital. I was getting flowers, cards and calls of congratulations...yet, I couldn't get too excited.

On May 4th, My sister-in-law and niece came to visit and to see my twins. I noticed that Nick didn't look real good, and made a comment to the nurse to keep an eye on him. We just got back to my room, when the nurse came to tell me that Nick was having some problems. I started crying. They called my husband for me and I called my parents to tell them that Nick was not doing good, and to please say prayers for him. As Tony and I sat in the NICU watching the doctors and nurses work frantically on Nick, I felt sick...physically sick. How can this be happening to us. My beautiful baby is dying and there was nothing we could do! The gave him several blood transfusions to try to stop the bleeding in his lungs. It wasn't working. They then brought the ultrasound machine in to check to see if he was bleeding in his brain....he was...grade 4....there was nothing more they could do. They worked on him for 4 hours before telling us that he wasn't going to make it. At that point, I got to hold my baby, really hold him. I didnt want to forget how he smelled, looked or felt. He was so tiny, yet so perfect. My in-laws got to the hospital in time to hold their grandson, before he passed. I wished my family could have met him. He was so beautiful. But they were all over the country. My parents live in Arizona, sisters in Alabama, Pennsylvania and so on...Anyhow, They were there with me in spirit. As I was holding Nick, I just kept telling him that he was going to be with Uncle John, my brother who passed away 20 years ago at the age of 24. I know know why he died...He died, so he can be waiting in heaven for Nick, his nephew. I have to keep telling myself that they are together or I'd really lose hope. Well, he passed away about an hour after I told them to take his vent tubes out. The nurses took tons of pictures of Nick and then of Nick and Kenny. I will always cherish those pictures and the staff of the NICU. My father in law was holding him when he died. It was the worst day of my life. I thought having a miscarriage was bad. Nope, this was, by far, the worst pain anyone could ever feel.

I have a video that I put together...

Here it is, please watch...

My Twin Pregnancy from michele tomecko on Vimeo.

Kenny was in the NICU for 129 days. He had surgery to close a valve on his heart, several blood and platelet transfusions, Collapsed lungs...seamed like every other week, about 3 really bad infections, in which we almost lost him. ROP in both eyes which required him to have laser surgery. A PICC line put in, but that became infected. He was on the ventilator for 3 and a half months and about that long on a feeding tube. He has severe BPD (bronchial Pulmonary Dysplasia) which he will probably have problems with lung issues for a very, very long time.

He also failed the hearing tests in both his ears. I thank God for him every day. He could have easily died, But with the help from the hospital (MetroHealth), the doctors, the Nurses especially and his twin guardian angel and God, He is here today! Kenny is now a growing, thriving little boy. He is still having major lung problems, hearing problems, in which he is getting hearing aids for, muscle tone problems, and developmental delays...he is just starting to crawl on his hands and knees...but other than that...he is perfect in every way! He is on oxygen (at night) but that is to give his little heart and lungs a rest. Every day is a new adventure with Kenny. He has been hospitalized several times because of his lungs and getting sick...when he gets sick, you can almost bet that he is going to be in the hospital. Feeding him is another problem, because of his gag reflex from the vent tube being in for so long, he doesn't want to eat...only drink his bottle. We finally got him on stage 2 baby food, but it is still a very rough ride...trying to get him to eat that even. So that is the story of my Kenny and Nick...two perfect babies of which one came home to us, and one went home to Jesus.

Wish Upon a Hero - I wish For angel ornaments

Wish Upon a Hero - I wish For angel ornaments


Please help us out with our wish...or any other wishes that you can help out with on this extraordinary site in which they help grant wishes!

Not Supermom

If I was supermom, I would be able to fix all things. Sure, give me the newest gadget, a computer or something to put together and I could probably figure it out is a short amount of time....give me a micro preemie...and I am lost. I fail in this part of life. I have given it my all...and then some. Told by all that the worst was the NICU stay...it was pretty bad. Not knowing from one day to the next if you'd get that dreaded phone call or walk in with the nurses faces looking grim and a box of tissues strategically posted close at hand. But as the years have gone on, I have experienced the whole NICU stay, double laser eye surgery, double hernia operation, RSV and upper respiratory infections several times, genetic testing, strabismus surgery (to correct crossed eyes), a g-tube placement surgery, seizures and epilepsy, spinal taps, fevers that were to high to even imagine, throwing up on a daily basis, not eating solids, developmental delays, muscle tone issues, deafness and hearing aids, being non-verbal, blood-work, blood-work, blood-work...oxygen tanks/machine, breathing treatments twice daily since the NICU stay, medication and lots of it everyday....oh the list goes on and on. Not to mention the looks and stares from people, some of which are staring out of curiosity, some for pity and others that have no clue, think I dont know how to keep my son quiet in a store or public place (yes, he is very loud at times with his Ahhha and ugghs)...so no, the NICU stay was a piece of cake for us.

We cant plan on doing anything because well, we just cant. There is pretty much an unknown with us. It is unknown what tomorrow will bring, far different than a normal, non micro preemie. So planning on going out to dinner next week or taking the family somewhere for a fun weekend is usually voided out by a hospital stay or sickness. Sure, our son is not in a wheelchair, he doesn't have severe CP, he is not blind, and much more...but he does have issues very similar to those that are. Its just that much of his issues are not necessarily seen. We see it and live it everyday. I am not supermom. I sit and cry like any mom would. I don't want my son to die...I don't want any of my children to die for that matter, but I am mainly referring to my micro preemie in this post. He has beenthisclosetodeath on several occasions...and not just in the NICU. I don't want to have to use the empty plot that sits right next to Nick. I don't want to ever have to have that sick feeling in my stomach, that only a mom who has lost a child knows. The unable to help or do anything. I don't want to have to cry so hard and so long that my face gets burnt from tears and wiping the tears. I don't want to have to make life changing and risk taking decisions. I don't want to have to explain why, how bad and how long to anyone. I want to be a normal mom...not a supermom. I want to be able to watch my child grow, thrive, be happy and healthy. I want to be able to get angry at crayon on the walls. Be able to plan and have a 13th birthday party blowout for my kid. Be happy at a new thing learned. Be sad because of a scrap on the knee...not another hospital stay or an IV. I don't want to have to know how to give Diastat rectally or give and understand what a bolus feed or continuous feed is. I don't want to know the medical terms. For that, I would have become a nurse. But I do. It was not a job I wanted...I just wanted to be a mom to lots and lots of beautiful kids with my husband that I am madly in love with. I thought I'd have it easy. Not easy in terms of homework, quiet time or shopping...but easy in terms of healthy kids and doing normal, fun things. No parent should have to stay up all night worrying about their child in the hospital or having to figure out if we are making the right decision on a very needed surgery. Some may say that we should have stopped after just a few...that we were bound to get...this. But its not like that. I wouldnt trade any of them in...not one.

See, I am only human. I can only take so much God. Miscarriage after miscarriage...sure, I have cried...but I have also been OK. Loss of a child...I have cried and still cry...I am not OK with this. I know it was meant, but no child should die. Criminals and evil minded people should be the ones to go before children. All my worst fears have come true...all of them and I am not supermom.

I can't be here at home taking care of sick kids, going through some "things" myself, cook, clean, wash, do homework with the kids, make like we live a normal life, and be at the hospital with Kenny...its just impossible. Physically and mentally impossible. I am trying and think I am doing a pretty good job at it...but I am tired God. I am really tired. I, well...we need a break. I want my kids to be healthy. I want to be able to finally sit back and relax. Be able to have friends, socialize, be part of my other kids school doings, go on a date with my husband....heck, cuddle at night with him without having to worry about feeds, throw up, etc. I want to be me again. God, taking Nick from me and making Kenny so sick and scaring me several times...has taken a lot of me away.

We have been blessed with great family and friends and a many kids...but I am scared because I am not supermom...

I'm just Michele.

One week, and still in the hospital

Well, its been one week and Kenny is still in the hospital. He is feeling much better in terms of the virus that he had. Pulse oxygen sat. is normal for him, his cough is barely there, and the fever is gone. They have upped the amount taken on his seizure medication too. The main concern now is the throwing up all the time. This has been my concern since he's gotten the feeding tube. We've (the nutritionist and us) tried everything from trying to feed him more by mouth to feeding him more by feeding tube...and no matter what, he is still not gaining...and he is throwing up everything. I asked the doctor if it was because his stomach is too small and he just cant handle too much going in. The newest doctor that is taking care of him while he is there now, told me that she doesn't think this is the case...because if it was, he'd be at least getting some calories and gaining something....but he is just maintaining. I mentioned to them that he is a very active little boy...he just goes and goes all day long so maybe he is burning up the calories that way on top of the vomiting...they just don't know. So, he is staying over the weekend where they are taking him off his reflux meds so by Monday, they can do a probe (or scope...not sure what they called it) to see the reflux. If it is showing its ugly head like they think it is, they will be performing the nissen fundo surgery on him (which I am scared to death about).
In the meantime its been a nuthouse here. Gina has a sinus infection along with a "barking" type cough that is making her throw up...yeah...whats with my kids and puking?! I couldn't take the on again-off again fevers and the coughing/runny nose anymore so I took her in. A few weeks ago, she was diagnosed with croup but has since gotten much worse with the symptoms so that is why we were at the peds yesterday. It seems like this season has hit our house hard. We have all been using the hand sanitizer non stop but it still isn't working. I think I am going to have to go out and invest in hospital masks for all of us (tee hee) because we're all fighting either sore throats, sinus problems or coughs and runny noses! This is the downfall to a large family in a small house. Its just the way it is. Maybe this whole "Kenny getting sick" thing was good in its own way, because now the doctors can finally see how much he really is throwing up and not gaining weight...and will help us with finding out answers. Keep the prayers coming. I really miss Kenny being home with us. This whole thing has pretty much been a nightmare for us. I am very grateful for all of the prayers going out for Kenny...keep them coming, he really needs them more than ever.

Thankful to Shutterfly Thursday

I am taking a break from the "Kenny in the hospital" posts to just take a moment and think about the time of year it is. Now that Halloween is over, its all about the Holidays...you know, Thanksgiving, Christmas, Hanukkah...etc... This is my FAVORITE time of year...I love the traditions...We have a huge Thanksgiving dinner and Christmas dinner here at the Tomecko house...Turkey, sweet potatoes, and all the veggies and desserts...love it! Then there are the gatherings. This is the time of year that we see family that we haven't seen all year because of how busy and hectic life is. There are the decorations, music, shows...and cards. By the time Christmas is over, my walls and doorways are loaded with Christmas cards! We usually take our family picture...well, I usually set the kids up...make a big production of the whole "Christmas Picture taking time" LOL. It used to be, where they all wore something Christmasy...we have graduated to just matching...or at least close to matching. We've used Shutterfly for all of our pictures/cards since Kenny and Nick were born. I used their 4x8 photo card for a thank you/birth announcement when they were born...it was great because the one design I used, let me use 8 pictures of them, so I started off with the first Kenny then of both of my twins, one of Nick and then went in progression as Kenny got stronger and bigger and then finally came home from the hospital. I was able to show everyone who never saw Nick, what he looked like. I got to show my family and friends that yes, we did indeed have twins. How small they were and how big and strong Kenny had gotten since their birth. It was so nice to have been able to show everyone and to thank them all at the same time!

We have since then, taken pictures of the kids (like I said above) for Christmas pictures...and let me tell you...the new line of picture cards that they came out with this year...I am going to have a hard time deciding which one to pick. So you all might be getting a few from us this year...LOL!

If any of you want to see what I'm talking about, here are some links to many different kings of cards... Christmas cards, Holiday invitations, one of my new and favorites that...ah-hem...many of you will probably be getting this year from me because you all know how much I love to write about us...the new Holiday story cards (I am really excited about these)! There is so much on this site to use...LOVE IT!

So anyhow...I just want you all to know that no matter what is going on in your lives, take a few minutes out of your day...be thankful for something, even when you don't think there is much to be thankful for...there really is. Look back at pictures, send a photo card (or story card) to show your family, friends and acquaintances what you have to be thankful for this holiday season. I know with everything that has been going on here, with Kenny, that it has been very hard...but if we keep positive, don't look to much into the future, and just find good in everything...that things don't look as bleak! Remember...I LOVE getting and giving Christmas cards *wink wink*!

Oh...and this would also be perfect for you preemie parents out there! I'm sure the NICU would love to get and see the progression of your little miracle from the NICU stay to now!

Still in the hospital

Well its Wednesday and Kenny is still in the hospital. It has been one thing after another with my poor little guy. Sunday he was feeling a little bit better, heck...Saturday evening he was smiling and playing with his toys with me. He still had his really bad cough and the oxygen saturation was down. By Monday, he was looking really crummy. I had Sydnie, Kayleigh and Gina home really, really sick with fevers, coughing and runny noses (basically the same thing that Kenny has) so I couldn't go to the hospital to sit with him. My sister went for me and sat from 12-4 and then I went from 4-10. When she was there, his fever spiked again and to her, it looked like he was having small, very short seizures, When I got there at 4, it DID look like he was having focal seizures (these are seizures where a person just stares for a few moments). I told the doctor about it so yesterday (Tuesday) They did another EEG on him. We should know the results today. His hair and head are covered in glue...poor baby. So, in the time since Saturday night (wen I thought he was feeling better), he developed an ear infection, hasn't been able to get rid of his fever, and still has the cough (although not as bad). His other problem that they are trying to work out is him not being able to hold down his feeds...at all. Last night when Tony and I went down there, he was playing and smiling with us...but still looked/acted really sick. I laid him in his crib so he could get comfy and fall asleep, when all of a sudden, he projectile vomited everywhere! It was horrible. He just wouldn't stop throwing up. We had to give him a sponge bath and change his whole bedding, he even got the floor! So now we are back to square one with the whole feeds thing. I have no idea when he is going to come home. All I know is that he is really sick. They need to get his throwing up under control, his feeds regulated, his fever to stay away, his oxygen saturation in a high/normal range, his G-tube site is looking like it is swollen and infected again as well...and figure out why he is having small seizures. I am so scared for my little boy. I never thought that I'd have to worry about if my son would die from a simple virus or go into a seizure and not come out of it. My anxiety level is through the roof. Our other kids have been so awesome through this whole thing. Getting their homework done. Not fighting with each other...just being very good kids. It has just been a nightmare for all of us. Worrying about Kenny and having to deal with sick kids at home but wanting to spend my time at the hospital with Kenny because he is all alone and so sick...it sucks so bad. Thank God for my sister Andrea. She has gone to the hospital when I couldn't and also has come over to watch my other kids so I could go to the hospital. She sat for 4 hours at the hospital just holding Kenny! I am trying to stay very strong and know that God has a plan..but, (I'm being very honest here) I have not been a big fan of God's plans lately. How do I trust in God if he has taken one of my kids already and my surviving twin is so, so sick with so many health problems? I just want Kenny to be healthy and normal....is that to much to ask for? I never thought that after his nicu stay, that I'd have to worry about him getting so sick from his chronic lung disease, that he could possibly die. I never thought that he'd have seizures...especially since I was sooo proud of him for never having a brain bleed of any kind when he was in the NICU. I never thought that we'd be spending Nov-May in the peds unit at the hospital where all the nurses, doctors and cleaning crew knows Kenny...very well. I have sleepless nights wondering if I'm going to be getting a call in the middle of the night from the hospital.

So, the plan of action today is to find out the reading of the EEG, figure out if he needs a Nissan fundoplication procedure because of his constant vomiting (which is not good for his esophagus or teeth). To make sure his fever stays away and that his lungs are clear. They gave him a new IV line on Monday so they can give him fluids if he needed them (which he did/does)./otddfl

u3

Times like this, I really wishm

So please keep Kenny (and us) in your prayers. This is no just a little cold that he got...this is very serious. He is facing many problems all at one time.

Thank you again.

Kenny update...Happy Halloween

Whew, what a trying last few days. Kenny is feeling much better. He is still having a hard time with the oxygen saturation, but I really feel its because of his bad cough. He is on around-the -clock breathing treatments so that should do the trick. He is not coming home today like we were hoping. He has been throwing up and not tolerating his feeds at all, so they are starting him on Reglan and he will be seen by his nutritionist tomorrow. I also think they want him to be seen by his neurologist for the seizure as well. So, no trick or treating for him this year...which is fine, as long as he gets better.

Last night, Tony took the kids to the wedding that we were all supposed to go to. They put together last minute costumes that we had here from the previous years...and my creative hubby decided to go as "Crazy Banner Man"! He had the banner material, vinyl and mask so it was easy to put together...and it turned out pretty good!!!! See what you can do with short notice and some creativity?! LOL.

I am so glad Tony took the kids to the wedding. They needed to have some fun...especially after everything that has been going on. When they picked me up at the hospital late last night, they were all talking about how much fun they had. They were saying that it was so much better than a regular wedding...it was actually fun! HAHA!! I really wish I could have gone, but Kenny needed me to be with him...and that was more than fine with me. The bride and groom who put on this really cool wedding

He was smiling and playing with me, so that's how I know he was starting to feel a little better. Please keep the prayers coming.

You know, I always thought that because his Synagis shots stopped when he was 2, that he was immune to the whole hype of how dangerous RSV is in preemies...boy was I wrong! I have learned that because he has chronic lung disease (BPD), that RSV will be a big problem (if he gets it) for a long time. So not only were we on "lock down" during the RSV season for the first few years of his life, it will continue for the next few years (at least). Time to buy stock in hand sanitizer and paper towels!

Happy Halloween everyone!

Please stay safe and remember the kids that are allergic or have certain foods/candies that they cant have....Smarties, Dum-Dums and Pixie Sticks are a perfect choice (thanks to my friend Jen who reminded me)!

tomorrow....the start of Christmas music listening! woo hoo!

Please say a prayer for Kenny...

Last night,we were at a costume shop picking out our costumes for a costume/Halloween wedding for today (Saturday). We were looking forward to going as Snow White, Prince Charming and the seven dwarfs...when Kenny went into a seizure at the store. It wasn't as long as the last 2 he had, this one lasted about 10 minutes...probably a little longer but we were freaking out. We were far away from our house...and from his hospital we always take him to so we went to the closest one by ambulance. They ran blood work, took chest x-rays, gave him a breathing treatment and gave him Tylenol because he had a very high fever (again) of 104+ degrees and was coughing uncontrollably. So not only did he suffer from a seizure, he is very sick. They diagnosed him with RSV and transferred him over to his hospital (Metro) where they know him. He is comfortably resting tonight but it was very scary nonetheless. RSV in preemies is very dangerous...I guess even when they are 3, it doesn't get much easier, huh?

It just goes to show you that in our life, the life that was given to us, we cant make any definite plans. Our entire weekend was changed in a matter of a few seconds.

So not only am I facing having to take care of Kenny and his RSV and seizures but I get to go through a personal heartache *completely different than Kenny's...or at least try too.

Please keep Kenny in your prayers, he is a very sick little boy. This is going to be a very long fall/winter/spring for us.

A special Halloween at school

Yesterday was Kenny's Halloween party at his First Step Preschool. Tony and I volunteered to help out.
Kenny in the morning, looking like a cool biker dude...walking out the door for school.

At school, he gets to play in the gym...he loves being pushed on his bike (doesn't know how to pedal yet, but this is one of his things they are working on with him).Getting a hug from one of his friends that he's known for 3 years now...Tori. He loves her!In class having snack time. Kenny has his assistant right behind him helping him with things.ewps... he spotted the camera.Giving me his evil eye. LOL. He doesn't like to use the sippy cup w/straw too much.He spilled his sippy cup so he was looking at me with that look like...why are you still here with that camera mom, look?! haha Tony and I waiting at our "station" for the trick or treaters...oh, and Gina too. She helped pass out the pencils ;) My big thing for Halloween...Halloween shirts and socks! LOVE THEM! Tony worked all night long and got up early to help out with the PTU...that's why the coffee and the zombie face (still cute though *wink).Tony waiting...waiting...waiting for the classes to come around. Off to trick or treat in the halls at the stations that were manned by us parents.Wait...is that a slight smile on his face? Why yes. Yes it is! This was one of the nicest things that Tony and I have been to. To see all these special needs kids excited to trick or treat. Its something that we would never have known if it weren't for Kenny. Kids with a wide gamut of needs...some slight, some needing an assistant (like Kenny). It was so nice to see that kids are kids no matter what. They all love to do the same things. Living as a parent of a special needs child, I am so proud...I truly am.

Now I know why he looked so sick...with the dark circles under his eyes...when we got home Kenny had a great time coloring in his coloring book and playing with his cards. We put him to bed last night, and within minutes, he developed a fever...I mean...one minute he was perfectly fine, the next, he was burning up. I quickly gave him Tylenol and put a towel down (knowing he would puke...which he didn't thank goodness). We were up all night with him coughing and trying to keep his fever down...along with Kayleigh. She came home from school yesterday and fell right to sleep. Now she has been fighting a fever for the last 3 days but felt much better yesterday so I sent her to school. Bad idea. She woke up after a 4 hour nap and was burning up and coughing. So, this should make a pretty interesting Halloween weekend. We have a wedding to go to. Its a costume party wedding. Tony and I are going as Snow White and Prince Charming, and the kids are going as the 7 dwarfs...yes, I'll take pictures. I am praying the kids get better by then. UGH the prayer request is out there for us.