Tuesday, November 4, 2008


On this eve of election day,I want to share something God has placed on my heart. I have a passion for politics like I have never had before. Claire has changed a lot in me,including wanting my voice to be heard on some of these political issues.We live some of these issues daily. Don't worry, I am not going to tell you who to vote for,or get on a soap box. I just ask that you all go vote. More importantly,I ask that before you go vote...PRAY! I ask that you pray for God to speak to you'r heart before you cast that vote. Pray that you hear what God is telling you.Listen to who He wants you to vote for. Let Him speak to you'r heart and let Him guide the decision you make.He is in control of the outcome of these elections,but I know He wants us to unite together in prayer for our country.So, not only do you'r part of casting that vote,do it with God by you'r side guiding the way.I know what He has placed in my heart.I pray that you are voting with what He has placed in your heart too.No matter who becomes our next president,God is King over all the nation......IN GOD WE TRUST.....

Saturday, October 18, 2008

Season to Season

October is one of my favorite months. The weather is mild,the sunshine is beautiful,especially when it hits the color of the autumn foliage.Today, we went for a country drive & we admired God's handy work. What a display the trees show. The last brilliant burst of color & life before the winter season comes in & the trees go into quiet hibernation. There are days in the next season that they will show another side of beauty. Each winter there is at least one ice storm & the trees will display beautiful glistening icicles,again showing unimaginable beauty.

I find myself admiring the trees for the fact that in whatever season they are in, they always find a way to display their inner beauty. I feel the same about Claire. No matter where she is or what is going on she always finds a way to shine her beauty. Her smile lights up the darkest season. I truly believe that is a gift of all special needs children. I believe God places these children in places they can show their beauty,no matter the season.

I cherish these days. I still have an "under-lying" anxiety since Claire's last episode. She has had a slight fever for 2 days now,& I suspect another UTI. We are keeping a close eye on her & will call the doctor first thing Monday morning.

I finally made the decision to be a full-time homemaker. I have mixed feelings on this. I know that I need to be home so I can give my full attention to my family,but I also had a "work" family that I am missing very much. I knew my season for being a nurse was coming to an end,but the experiences I have had & the friends I have made, will be part of my heart forever.I believe God used my nursing season to prepare me for what ever is ahead. It is just another step of faith to leave my nursing & move forward to where ever He is leading me. I trust Him completely.

Friday, September 19, 2008


I have been really feeling spiritual in the past weeks. I have been off work to take care of Claire.So, I have more time to think & reflect on things I don't usually have time for.

I feel this experience has brought me so much closer to God. I witnessed His love so strongly that day that I now feel the deep longing to satisfy Him. I seen Claire dying in our arms ,but knew we were in God's arms. I felt Him holding us & I knew everything would be o.k. But I also know now, that I am to do more with these gifts I have been given. I am just waiting on God to lead us on the next step of this journey.

Our family loves fall,it is probably our favorite time of year. We were married in the fall & I know I'm biased,but it was beautiful.It is also football season & our boys love it.We seem to settle in at home during the fall,snuggle more on cold evenings & have more together time. And of course the color of the leaves is always amazing.
We are just taking life & drinking it all in,good to the last drop!

Tuesday, September 16, 2008

Weathering the Storms

We seem to be getting better and better at weathering storms here at the tot 2 teens household. Claire has made it through this last storm like a hero. She constantly reassures us that she is o.k. by just being so full of life. She is jabbering away in that baby lingo that requires some kind of interpreter.She is constantly smiling & laughing, just happy,happy all the time. She is also getting used to her seizure medication.It does seem to make her a little extra sleepy some days,but other days it seems to get her wired.But all in all she is great.So, we are settling in to a new kind of normal once again.Thank you God!

The next storm actual involved the weather.The remnants of hurricane Ike came through the Ohio Valley on Sunday. We are not used to tropical force winds in this area,so we were in awe. There were trees down every where & it was biggest power outage in the history of Ohio,according to Duke Power Co. & half my family is still with out power today.Much to the excitement of my children,school was also cancelled!You gotta love a "snow day" with out the snow!My husband has also been excited about the latest storm too,because there is now an unlimited amount of wood to be cut.The wood pile is going to be a big one this year. We will be warm for the winter,yippee!

Will we be ready for the next storm,what ever shape or form it comes in? We have survived so far,so I am counting on continuing this ride of a life time for a life time & with God leading our way,I know we will be safe! He will get us through any storm that comes our way.

Thursday, September 4, 2008

Nervous Normal

We are trying to let life go on as usual. It is kind of hard to be in a world of a pediatric hospital one minute & at home with the normal everyday stuff in the next minute. The answers from all the expert doctors while we were in the hospital were just shades of gray. We will never know what caused Claire to quit breathing,we just hope & pray that it does not happen again. It could have been her shunt going bad,it could have been a kind of seizure.One thing is for sure,it was severe & it was scary!Definitely brings meaning to "here one minute & gone the next",because that is exactly what happened.
We have been given a gift from God. We have been given a special needs child. She has made us better people,a closer family,& has shown us the power of love & prayer. I see a light in her eyes that is heaven sent. I thank God for letting us be a part of her life. We have been prepared for the "worst "for awhile now,Saturday the "worst "happened. Seeing the life leave your baby's eyes is not something we wanted to experience,but we stayed calm & did what we had to do. We praise God for letting us have our miracle remain in our lives & pray she is with us for a lifetime. We give it all to Him,& accept what He gives back.
Well,headed to bed to snuggle with my miracle for awhile,knowing God is holding us both.

Wednesday, September 3, 2008

Rainbow Weekend

I wrote my last blog on Saturday & then went to get some "camping food" at the grocery store.Claire went with me & so did my middle son Michael. We shopped,everything was normal,Claire was her smiling self,until we got to our campsite. I took her out of the car,put her in the high chair by my husband ,who was working at starting a campfire. I took a 5 minute walk with my youngest daughter Jenna & when we got back Claire was asleep in the highchair.So I took her to lay her down for a nap. She was hot & a little cranky,the camper air conditioner was broke,so I laid a blanket in the shade,& laid down with her.She threw-up,& with in 2 minutes,quit breathing.It really was that fast. I called an ambulance & then my husband & I started CPR. Her heart never stopped,so we gave her rescue breaths.She quickly was turning blue. We just kept breathing for her,we also kept her awake. She would open her eyes,but then just seem to fade away. It was like she forgot how to breath.She ended up being life-flighted from the site. I have been giving quick updates to family & friends on my carepage,so I will copy them here.
At The Rainbow
Posted Aug 31, 2008 12:07pm
Hey everyone...Just have a quick moment to ease everyone's mind. Claire was life flighted to Rainbow Babies last evening because she quit breathing on us. There was no seizure activity noted,Bryan & I started CPR,but only had to give her breaths,her heart rate dropped but never stopped...Thank You God.She has been on a ventilator all night and was just extubated about an hour ago,she is still requiring oxygen at this time. All the preliminary testing(and there was alot of it) has all been coming back good. We will know more after we talk to the neurologist.I know we will feel the prayers,Claire is as always proving to be the fighter...In Gods Hands...A very special thank you to anyone & everyone who was a part of yesterdays scene. She was life flighted from the scene(which happen to be at our friends house,we were camping & fishing for the night)Our volunteer fire department was excellent,& our flight crew commented to me when we arrived at the hospital how well everyone did.I did get to fly with her,what an experience.The EMT's also did good.Praising God today,thankful for all we have been blessed with!Love TinaP.S. My family & friends & our whole community is really just the best! I love you all!

Saturday, August 30, 2008


Well,the first day of school has come and gone. I love the first day of school,new clothes,new school supplies,new shoes, and last but not least the peaceful QUIET.

I always have tears in my eyes,because it is always a milestone for each child. My oldest will only have one more first day of school,he will be a senior next year....YIKES. Then my middle child started his first day of junior high,I know how fast time will travel with this milestone. In a blink of the eye he will be graduating & moving on to the next phase of life. My middle little one started 3rd grade,she was nervous about this until she found out there was a friend of hers there too. Then my baby. She will start a 1 day a week preschool program later this fall.More tears in my eyes!

Time travels so fast as an adult. I don't like it. I guess you just have to stop and enjoy those moments that seem to fly by. I have to stop this crazy ride and look around to those important times,or they will be gone. Enjoy the moment,live for the day.Life has so much to offer,but you have to make the effort to not let it pass you by.

We are getting ready to go on a little overnight camping trip. All 6 of us. Camping is not my favorite thing to do,but hopefully I can take my own advice and enjoy the moment.Even if it means getting ate alive by bugs!

Wednesday, August 20, 2008


Today I took Claire to get fitted for her AFO's(ankle,foot braces). She has taken me to places I never thought I would go. I heard a man in the waiting room talking on the phone he said "I am waiting to be fitted for my new leg". That is a statement you don't hear everyday!It sure puts things into perspective.We have a whole new world Claire has made us a part of. We have learned a lifetime of lessons in the past 19 months.
Claire was a big performer,she makes everyone smile no matter where she goes. She will be getting the braces in 2 weeks. These will give support to her ankles & feet helping her bones & muscles stay healthy. We are still unsure if she will be able to walk,but I have a feeling this will not slow her down.
Last June I posted on Claire's 1 week birthday. At that time I never dreamed we would be celebrating her life at 1 week. We are getting close to a 15 month celebration,God is good!

Posted Jun 19, 2007 7:36am
I never dreamed we would be giving good news on Claire's 1 week birthday...we really need to celebrate this day....I am just in such awe over what a fighter we have...she is just amazing...she is off the morphine and had a good night...rested on her belly for most of the shift...she is taking 16cc of breast milk now and tolerating it well...I could probably feed the whole NICU with the amount I am producing :) The next step is the MRI and they are thinking maybe on Thurs.,she has to be in very stable condition before it is done,it can be a stressful thing for her..I am in no hurry ...Bryan had a nurse tell him last night that she has worked the NICU a very long time and has never seen such a severe case of both (hydrocephalus & spina bifida) do so well..I love to hear things like that..Any bit of positive helps me get through the day...Well that's all for now..I need to get to my baby girl...there is a family room close to the NICU that has a computer and through out the day I take a few minutes to read all these wonderful postings...you can't imagine how much it is helping Bryan and I..We really look forward to it...THANK YOU!!!God is good...Hope everyone has a good day!..Love Tina (PS. new pics. to see)

Tuesday, August 19, 2008


I've delivered all my babies by c-section. I have always had a rough recovery,it takes me quite awhile before feeling better.So,my husband was a very important part of Claire's care. He did an amazing job. I had to go back to my room at night and he stayed with her. I am not sure when he slept,but he was there for us both. He would give me a morning report,I would post it to the carepage for everyone at home to read.I am not sure why I posted this with the caps lock on? I probably thought it was faster.
This posting also showed how much I was trusting God instead of putting my faith in the testings & doctors. To this day, Claire has not showed any signs of cognitive delay only physical delays. We will have another MRI in January 2009.
Posted Jun 18, 2007 7:11am

Monday, August 18, 2008

Recovering Well

We were at the hospital for 3 weeks,most of that time was in the NICU. The world of a neonatal intensive care unit is very quiet,but yet there is always a flourish of activity going on.We called our room "private",but it was usually used as an isolation room. We liked the isolation.We had a very peaceful setting for our little fighter. She had a window that let in beautiful sunshine & we played soothing music for her most of the day.She recovered from surgery very well,and way better than the doctors expected. The picture shows just how at peace she seemed. This made me feel at peace also. One of my biggest worries was that she would suffer. We chose to give her life(not terminate,as suggested) and we have never for one second regretted that decision.
Posted Jun 15, 2007 12:00pm
Posted a few of the latest pictures so everyone can see how good she looks after surgery...She had a good night..Her pain medication was up to keep her comfortable,but had to be turned back down due to having a couple of episodes of apnea(stopped breathing for small amount of time)They think this could have happened because she was resting too well due to the medication or it could be a sign of some of the neurological problems that could happen,but this has not happened again(last was at 5 AM)and that is a very good sign. They said her head did measure smaller today(I think by 1 cm)and her back closure looks good..She definitely looks peaceful and always seems on seconds away from showing us a little smile...I am still playing catch up on rest,but otherwise couldn't be better...Thankful for every minute with our angel...God Bless..Love,Tina

Sunday, August 17, 2008

Peaceful Heart

I have found that reading back over those days after Claire's birth has been therapeutic for me. It has been reminding me of how far we have come. The fight we fought and so far have been winning. I can remember things like it was yesterday. I have images in my head that are etched there forever. One of those images are seeing Claire for the first time after surgery. I walked into the room and ours eyes instantly met. She did not smile,but she had a twinkle in her eyes that made my heart melt. It was also her way of telling me she was OK. I had a peace surround me at that moment that can not be described. My spirit was calmed with overwhelming love for this miracle we were witnessing. God never left our side,and He is still carrying us forward into the unknown. I am holding on tight.

Posted Jun 14, 2007 11:53pm
I know it is late to be giving an update but,we visited with Claire awhile and when we got back to the room I had trouble getting on-line,just now able to send news...AND THE NEWS IS GOOD!We walked into her room and the first thing I saw was her beautiful bright eyes looking right at me...She looked better post-op than she did before she went...She was so alert, I swear as Bryan was talking to her she looked like she was going to talk back(well at least give him a big smile)She looked so comfortable,the dr. thinks this will be her best night because she has some relief from the pressure of her head..Last night when I got to hold her I thought she could not be any more beautiful,after tonight I am thinking the same,she just is constantly making me fall even more and more in love with her! I am so happy to let others enjoy this journey with us. She is a gift from God that He wants us to share...Our next step is to watch her fluid shifting and decompression of her head...We will know more of the damage done to her brain after the shunt has had time to take away the fluid(4-5 days)It is a wait and see kind of thing,but we know our girl and she will continue to amaze us!!At this moment I could not be happier,she has kept up a good fight and I am proud of how far she has come..Again celebrating this step and on to the next...Day by day and "so far sooooo Good" Definitely counting our blessings...Hoping we will ALL get a good nights rest(especially Claire)Praises tonight..God is truly AWESOME!!!!LOVE,Tina

Saturday, August 16, 2008

Remembering Surgery

The next carepage entry I am sharing is on surgery day. I remember the early am visit to the NICU. I felt very torn at those moments before surgery. I was definitely anxious,but also at peace. I knew this was what Claire needed to live. I also knew this could be her death. The doctors had said she may not make it through surgery,and if she did she could be breathing with a ventilator and have a "vegetable" like quality of life. Doctors have a way with words! Of course, the waiting was grueling. At the end of the day this was another one of those times that our angel proved those doctors wrong. ( Please excuse the punctuation & poor sentence structure on the following,but this was exactly how I wrote it on that mind numbing day.)
Posted Jun 14, 2007 2:43pm
Claire is out of surgery...Her surgeon gave us this news over the phone: "Her shunt is in,she has sutures on her head and abd.,started working on her back at 11:30 (they started surgery at 10:00)finished at 3:20(thats when the dr. called)Dr. was able to get a nice seal of dura,which means there will be no leakage of cerebral spinal fluid,her skin was tenuous,relaxing incisions on her sides are big,6 inches on both sides from hip to armpit,breathing on ventilator right now,but presently trying to get her off,if she can come off she can start tube feedings tomorrow,she will need to lay flat for 24 hours,catheter is in and she is getting antibiotics for next couple of days"...She will be back to the NICCU in about an hour from now...These are the notes I took when talking to the dr. so after I see her and talk to the nurses I will give you my interpretation of all that news...The dr. said "she did as as expected" Again lets celebrate this good news that she made it through surgery...So far so good has been the motto for today..We are all very tired but hanging in there...Can't wait to lay my eyes on her and see for myself how she is then I will feel better....More news later

Thursday, August 14, 2008

Poor Prognosis

I wanted to continue with our story that I had originally posted on the carepages. The following was written by me,but my son typed it into the computer. I had to deliver our baby c-section & was not able to do much for a couple of days. I was able to go to the NICU so I could be with her. She was 11 #10 oz. She had so much fluid in her head that it measured 54.4 cm(average adult size) The doctors were deciding if she was "stable enough" for surgery. I say they were waiting for her to die. We were very adamant on giving her a fighting chance,so surgery was done. She had her myelomeningocele repaired(the whole in her back & spine) and there was also a vp shunt placed into her brain to drain the fluid. The following was the day before this surgery.

Posted Jun 13, 2007 4:00pm
mom and dad just got out of a meeting with a team of Claire's doctors.(mom wrote this for me to post) They do not paint a very pretty picture....Surgery is tomorrow, she will be going in at 7:00 am, it will take 5-6 hours. They all agree her prognosis after surgery will be poor...We are trying to stay positive, but it is hard when 7 doctors are telling you different. Now is the time we will need prayer the most... they think she will not be able to come off the ventilator after surgery, then we will have to make some more very hard decisions. I want her to prove them wrong. She looks so good now and seems to be doing all a healthy baby does, so it is hard to think that she will be worse after surgery. We definitely need a miracle, but we are thankful for how far she has come, thankful she is here with us now. We are taking every moment to enjoy her beauty, and focus on how blessed we are to be able to hold her today. We will take each day as it comes and God will hold are hands as we celebrate Claire for as long as He lets us.LOVE & GOD BLESS Tina

Tuesday, August 12, 2008

Waiting on a miracle

I started a carepage in May of 2007. I did this to keep family & friends informed of all that was going on with our family during the birth of our youngest child. It turned into a kind of therapy for me. I found writing very comforting during this stressful & difficult time. I have decided to post some of the carepage entries on this bolg spot not only to share with others,but to let others get to know me better. I have over 400 readers on the carepage that have told me that reading our story has been inspiring. I am hoping to inspire more people.

Posted Jun 11, 2007 11:23am
Hello everyone!I know I said my next news would be "delivery day" but, I wanted to share our weekend with everyone.(new pics too) We decided to go to my Mom and Dad's boat at Lake Erie. I thought it was a good idea because the kids love it and we were only a half-hour away from the hospital. We really had a good time,it was just what we needed,put us by a body of water and we are set. I am good at rest and relaxation.We are enjoying being at home today,and preparing for the next stage of our journey. We are looking forward to celebrating Claire and giving her all the love and support she will need. The hard part has been waiting on our miracle to arrive. But, no matter what, I know God will get us through. He has already shown us He is with us by surrounding us with so much love and support from our family and friends. We see that by this webpage alone! We are truely blessed!Everyone can focus on the hours between 12:00-3:00 tomorrow. We are scheduled for the c-section at 3p,then Claire will need to be evaluated,her time of surgery will depend on her condition,they say within 24-48 hours. I am hoping for sooner,but they are the doctors.I will have B.Jay posting the news tomorrow. It will probably be short and sweet until I can give you my details.I had friends give me a quote.."A strong positive mental attitude will create more miracles than any wonder drug" I will definitely be keeping a positive attitude,faith and prayer...We are in good hands...MY LOVE TO ALL...GOD BLESS...Tina

Sunday, August 3, 2008

County Fair Fun

The week of the fair has come and gone. The kids all had so much fun. I had so much food!

Fair food recap: fresh cut french fries, sweet & sour chicken fried rice, fried cheese on a stick, loaded gyro, carmel apple, elephant ear & cotton candy...all topped off with a mylanta/tums chaser when I got home! Oh,what fun the fair can be.

Our family was all different directions this week,but we found a couple of moments of togetherness. It was like pulling teeth,but one morning we ate breakfast together at the fair. Other than that, it was hit & miss having us all at one place at one time. The teens pretty much ran crazy all week. "Hanging" you know! The tot did well,but the 8 year old got tired fast.This meant alot of "why can't I" or "I want" this & that. All in all ,it was a good week. We will suffer some repercussions this week. Everyone will be very tired & very ouchy grouchy!Oh, what fun the fair can be.

I am always impressed with my husband during fair week. I think he missed his calling. He really should have been a farmer. He is such a hard worker & really enjoys helping the kids with the animals. I hope the kids will learn his good work ethic. I am a bit lazy when it comes to farm work. I may be a bit lazy when it comes to work,period.

This week was busy,but I wouldn't have missed it. I have to admit going to the fair is not high on my list of things to do. I really don't like it much. But, I know we are making memories that the kids will never forget. They think this is the best week ever. The stories they will tell their kids about this week will be worth hearing one day. So, a week of fried food,sun,dust, animals & happy, happy children will be priceless moments to treasure.Oh, what fun the fair can be.

Sunday, July 27, 2008

Sunny Sunday

Tot 2 teens are all tucked into bed,with visions of the county fair in their heads. Although ,the tot really doesn't understand the full excitement of the night before fair. The other 3 are in 4-H,and will toss & turn all night because they love this week. They have a cow & pig to show & sell. These "projects" started in the spring. This week is the big pay off for all the hard work they have in raising these animals.It is a very good experience for them.(Dad loves it too) I, on the other hand have other reasons for going to the county fair,none involve animals. All involve fair food,yum!

Last year at this time ,our baby was still in a fragile state. I only made it to the fair once. It was my first time away from her. I was nursing and remember seeing the dairy cows being hooked up to the big milk machines thinking "move over girls ,I'm next". Look at us now. Our baby is trying to crawl, not "toddle" like most 13 month olds. But ,she is going to be mobile in her own way. She is still working it all out. Spina bifida affects each child differently. We are still waiting to see how much lower body control she will have. So far, she can move her right leg,but has trouble with her left. We are also unsure of how much sensation she has. We have learned it is a "wait & see" kind of thing. Her latest trick is rolling over & over & over again. She is still working on pulling herself into a sitting position. She is so strong,has been from the very beginning.

Today sure was a sunny Sunday,in more ways the one. First the obvious,it was a beautiful sunny day. Secondly, we were a family,together,all day. It is hard to find days that we all can be together enjoying the same activities. Let me repeat that "enjoying" the same activities. We also have been trying to find a "new normal" & today was as normal as it gets. Thank you God,for giving us this sunny Sunday,it was the best.Hopefully ,there were others who felt the warmth of the sun today,in more ways than one.

Saturday, July 26, 2008

My Reason for Blogging

I guess I've decided to" go where no man has gone before" at least in our family. I am the first to have an official blog! Well, I have been writing on Carepages,telling about the birth of our youngest daughter,but that was for family & friends. I feel this is the "big time"

I love to journal,mainly because it helps me deal with this crazy ride of life! I have been on a roller coaster ride of emotions since Feb. '07. My husband & I were excitedly waiting to see if we were expecting a boy or girl to be the latest addition to our family. We had experienced ultrasound technology 3 times,but never found out the sex of our baby until delivery day. We always enjoyed the surprise. But, this pregnancy was a surprise right from the start. I did not have a clue I was pregnant. More clues pointed to having some grave illness,or so I thought! The unexpected news of our family growing to 6,quickly sunk in & we all were very excited to find out if our team would end up even. We needed a baby sister to make the count 3 & 3.

The ultrasound not only confirmed our even team,it showed more information than we ever bargained for. We were having a beautiful baby girl,but she had severe hydrocephalus & spina bifida.( a neural tube defect affecting the spine & causing fluid in the brain) ....the roller coaster ride began!

We would not change a thing today. Our miracle is 13 months old & much to the surprise of doctors she not only survived birth,she has a thriving life.She completes our family in a way we would have never dreamed.

This blog will be a place for me to write about our family from "tot 2 teens" & share our blessings with any one willing to listen. Our baby is special & she has a special light that shines on everyone around her. I want to share that light with the world! I thought this was a good place to start.