Busy,Busy

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!

Milestones

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)

Faith

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
CLAIRE'S MORNING REPORT IS ANOTHER GOOD NIGHT.SHE IS TAKING 10 CC OF BREAST MILK EVERY 3 HOURS AND TOLERATING IT WELL.SHE WAS GETTING CONSTIPATED FROM THE MORPHINE BUT HAD A BM LAST NIGHT,YES WE EVEN GET EXCITED OVER POOH!
I GUESS BRYAN WITNESSED A LITTLE TEMPER WHEN SHE WAS GETTING WEIGHED.2 NURSES HOLD HER UP OVER THE BED WHILE THEY CLEAR THE SCALE, IT TOOK A COUPLE OF TIMES FOR IT TO SET RIGHT. CLAIRE DID NOT LIKE BEING HELD UP FOR SO LONG AND CRIED A GOOD CRY.SHE GOT REALLY RED FACED,BUT WAS CALMED RIGHT BACK DOWN AS SOON AS SHE GOT LAID DOWN.IT SHOWS SHE HAS SOME PERSONALITY.SHE DIDN'T LIKE SOMETHING AND TOLD US ABOUT IT.
THE NEUROSURGEON SAYS THAT ALL SHE IS DOING COULD STILL BE DONE WITH JUST A BRAIN STEM,BUT I THINK SHE SEEMS TO BE DOING A LOT OF REACTING TO THINGS.I HOPE WE CAN AGAIN PROVE THE DR. WRONG. WE WILL KNOW MORE ON THE BRAIN FUNCTION AFTER THE MRI.IT WILL BE SOMETIME THIS WEEK.
I REALLY DON'T CARE WHAT THE MRI SHOWS.SHE IS OUR MIRACLE AND I AM BLESSED TO HAVE HER IN OUR LIVES.WHEN I AM WITH HER YOU CAN FEEL GOD BESIDE US AND KNOW IT IS PURE LOVE..SHE IS AMAZING...EVERY DAY WE ARE TRULY BLESSED TO HAVE HER HERE . WE WILL CONTINUE TO JUST CELEBRATE EACH MOMENT...DAY BY DAY...I PROMISE TO WORK ON POSTING MORE PICTURES TODAY....HAVE A WONDERFUL DAY..LOVE TINA

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

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

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

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

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

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.