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Friday, December 28, 2012

S wanted a picture with his Izzy but she wasn't interested in the sitting still part ;-)



Tuesday, December 25, 2012

Merry Christmas!


Saturday, December 22, 2012

Christmas Break has officially started and I am already exhausted ;)  I feel like I haven't stopped moving the last few days--all those little last minute things to get done :p  I look forward to the days after Christmas when we can relax and slow down!

Monday, December 17, 2012

Today was S's surgery follow-up appointment--everything is looking great!  The bones are still nicely aligned and his incisions look good.  They took off the wrappings and splint and put him in a short cast--he was so excited about that :p  The long cast meant he couldn't move his elbow but now he is more comfortable and can do more things :)  The doc said the titanium rods will do the job of holding everything in place so the long cast wasn't necessary anymore.  Three weeks and we go back for another check and possibly get the cast off.  S is really hoping the cast can come off because then he could join the next session of swim lessons (he had to miss the last few weeks because of his arm and now lessons are over).

In other news, Izzy has gone and grown up on me ;-)  Last week when I was hospitalized, she had a hard time being away from me but she did it and even had fun while I was gone :)  She has been eating real meals instead of just snacking between nursing sessions, she has decided she likes drinking milk and water from her straw cup, and she has gotten even more opinionated.  My little baby has decided it is time to be my little toddler!

Sunday, December 16, 2012

Today was the last day of swim lessons--B sure was happy to be there :)

Thursday, December 13, 2012

S was finally able to return to school today and he was both nervous and excited.  It is the first time he has been back since last Monday when he broke his arm in the evening.  Last week, he didn't go in because the surgeon that set his arm did not want him in school while he was on the Tylenol with codeine--good call on his part because S slept away most of last week and when he was awake he was spacey.  He had an ortho appointment on Friday and then another on Monday, then surgery on Tuesday, and then he was sick from the anesthesia on Wednesday.  He has adjusted to the pain meds now and can take them if needed and still be alert so off to school he went.  He had a great day :)  He was happy to see his friends although he did not want to tell anyone what happened to him or that he had surgery.  Last week, he got a big envelope in the mail full of handmade cards from all his classmates wishing him a good recovery, many of them Star Wars themed because S is such a Star Wars fan :)  It was very cute.  They are all very curious about where he has been and what happened so we had a talk today about how it is fine if he does not want to talk about it but he does need to be polite because they are just curious and worried about him.  The standard second-grade response is "none of your beeswax" but I would prefer he be a little politer ;)


Wednesday, December 12, 2012

I think the universe is out to get me.....


Waaahhh!

S had his surgery yesterday--he was very nervous but he was a champ about it all. He was very cooperative and they asked him if he wanted a parent to come back with him until he fell asleep. He asked me to come and held my hand until he was asleep.



We took Izzy downstairs to feed her some breakfast and while waiting in line, I started feeling a little sick. I felt perfectly fine up until that point but soon afterwards, I was in the bathroom throwing up. I felt a little off and spent most of the next hour or so in the waiting room with my eyes closed while the mister entertained Izzy. 



When the surgery was done and S was in recovery, we met with the surgeon in a consult room--they successful placed titanium rods in S's two bones so they are nice and straight and have the extra strength to stay in place as they heal. There was one small complication--he had a bump on one of the bones from the healing of the first time he broke it and that was preventing the rod from going in. So they had to open up his arm and repair the bump so he does have an incision along his arm instead of just the two holes at his wrist. 



At that point, I commented on how hot the room was and the mister and the doctor thought it was cool. Someone, I'm not sure who, said I was really pale, and the next thing I know, I am on a bed with people poking at me and I have no idea what is going on. I lost huge portions of yesterday and have only scattered memories of most of the rest of the day. I have been told I collapsed and was very confused. My blood pressure was a tad bit high, I had a fever, and I was in tachycardia for many hours. They did not know how long I was in tachycardia before I collapsed and were worried that my heart was going to be damaged so I was admitted to the hospital for observation. I remember waking up in the Children's ER and asking if I hit my head because it hurt (they said no). And then I was in an ambulance but I have no memory of being loaded up in it. I spent some time in the adult hospital ER. I know I was moved to the cardiac observation unit but I don't remember being moved there. I had many EKGs and blood draws and was hooked up to heart monitors all night. At some point overnight my heart rate finally came back to normal and once it has stayed normal for several hours they did one last check of my heart--no damage. It appears I had a perfect storm of a virus, stress, the onset of a migraine, slight dehydration, and the pain from the infection in my arm that led to the tachycardia and collapse. Scary stuff, my friends. I really do not ever want to wake up full of tubes and wires again and not know what is happening or why :/



I was told that S was sick from the anesthesia and threw up a lot most of the evening but he feels much better today and is glad I am home. He was very worried because he knew something bad must have happened to keep me from taking care of him while he was recovering. Poor little guy :( Izzy had a hard time of it, too, and has not left my side since I got home this afternoon. B just thought he got a fun sleepover at Grandma and Grandpa's LOL

Tuesday, December 11, 2012

Surgery tomorrow

Well, S had his ortho appointment and the broken bones are still shifting around so he is on the schedule for a surgical repair tomorrow.  Third kid in eight months to be on the surgical floor of the Children's Hospital.  How did our boring little life get so complicated?

Sunday, December 9, 2012

She still has a low-grade fever but overall she is feeling better.  She plays for a bit, nurses, naps, plays.  And she kept down some crackers and soup :)
As soon as I hit "publish" on my last post, my girl woke and vomited :(  Some cuddles and mommy-singing made it better enough to try sleep again

It has been a VERY long week.....

Monday started off pretty well.  Izzy was finally well enough to go to her swim lesson and she was so excited, especially since her Daddy was able to come and watch her.  She kept showing off that she had learned the word water and shouted it often, she kicked, she splashed, she jumped in the pool on her own a bunch of times, she screamed her Daddy's name countless times so he would watch her, and she just had a ton of fun.  This was only the second lesson out of five she managed to make it to because of illness.  Her last one is this coming Monday but she cannot go :\  The reason is coming up.

B was in a great mood when he got off the bus and was even happier when Grandpa stopped by and invited him over.  That meant I would be picking up S with just Izzy and S loves that because it gives us "alone time" in the car--he had had a great day at school and chattered all the way home.  We pick up B on the way home, there is much fun with games, a favorite dinner, and then I ask S to do his chores while I give Izzy a bath.  He comes to tell me something and when he's done, I remind him to do his chores (ADHD--we remind a lot).  He goes into the hallway and I see him swinging on the  rails of the open baby gate (it is a swing gate.  He boosted himself up on the stationary rails and was swinging back and forth in the opening).  I tell him to please stop swinging on the baby gate because he could get hurt and within seconds, he slips, falls face first to the floor, there is a horrific CRACK and he screams "YOU HAVE GOT TO BE KIDDING ME!!! NO NO NO NO NO NO" and then crying.  He broke his arm again.  Exact same place as the break in August and his forearm is in a U shape.  I can't walk away from the baby because is in the tub so I yell for the husband in the hopes that he is still awake (he works nights so he got up for dinner and then went back to bed for a few more hours before work), tell S that it will be okay and please sit on the sofa because I have to get Izzy out of the tub.  I rinse her quickly and scoop her out and S is trying to wander around the house (just like last time) and the husband was awake and trying to stay calm (I guess if you are looking for a bright side it is that having been through it just a few months ago, I was not frazzled and was able to get us out the door very quickly).  Told the husband to go dress, called the parents to come get B, packed B's bag to stay the night and school stuff for Tuesday, got the baby ready, got S ready, got extra clothes for the baby in the diaper bag in case S was admitted overnight, and started the car to warm up.

I wanted to go to the Children's Hospital where B and Izzy had their surgeries this time--last time we went to the local ER and they had trouble setting his arm because both bones were broken.  Surgery was a possibility last time and I figured a second break that was presenting exactly the same made surgery much more likely.  I would much rather the pediatric orthopedic surgeons do it at a hospital I trust to do surgery.

S was very brave and did his best to stay calm.  They took him back immediately and got his IV hooked up and some morphine and did some x-rays.  I'm not sure how much time passed but I'm guessing maybe an hour or so and a pediatric orthopedic surgeon was down to set the arm.  In the local ER, we found out afterwards that a Nurse Practitioner did it and she didn't have much experience--might explain why there was so much manipulation to get it in place.  They gave him conscious sedation and then the surgeon set the arm--he did it really quickly, you could tell he knew exactly what he was doing.  They did x-rays right there and then to make sure it was okay and then began the splint.  I was expecting the board and ace bandage splint we had for the first break but the surgeon said he didn't think they were a good idea for kids--they are fine for adults but kids need more structure and support.  So he did a long cast and then cut it along the sides (staying connected on the top and bottom) so it had room to expand for swelling and then wrapped over it with some tape and an ace bandage.  The tape was to keep it snug but allow us to loosen it if there was too much swelling.  S said the outer bandage made it look like a beehive :p

We had to wait around for a while for him to come out of sedation and keep some liquids down (common side effect is vomiting but he did not either time he had ketameen (sp?).  Just like last time, he cycled between grateful, precocious, and belligerent LOL  I should have taped it.....

While we were at the hospital, a slightly annoying and itchy bump on my arm that I thought may have been a bug bite began to hurt and swell and turn red.  By the next day, most of my forearm and hand were swollen and it was so incredibly painful I couldn't believe it.  There were no appointments available for Tuesday so I had to wait for Wednesday for an appointment--staph infection :\  I pretty much did noting but sleep for the next three days because of the pain and exhaustion.  S is on codeine for pain so he slept with me....

Friday, B had his followup from his surgery last month.  His ears look great and he finally passed a hearing test!!

S also had an appointment at the ortho clinic--things weren't as good for him :(  The new x-rays show that his bones are at an angle instead of straight.  He is borderline for needing surgical repair.  They took off the temporary cast and did a new cast to reposition  his hand.  He goes back on Monday for another set of x-rays--the hope is the bones will begin to straighten as they heal so they are going to keep a close eye on it to see if we can wait it it out or if he needs to have surgery.

I stopped by my dr so she could check my arm--it looks and feels awful but the antibiotics need more time so I go back Monday to see if she can drain it and hopefully get out all.  At least I felt better today and didn't sleep all day :p  B had his swim lesson (S has to skip the rest of his lessons) and we ran some errands.  The boys and I watched a movie while Izzy played (she has no time for silliness such as the tv) but then she started throwing up :(  Poor girl has been throwing up on and off all evening.  She finally stopped and nursed a little while ago and so far so good.  I am tired but will stay up for a little while longer to make sure she is done throwing up.  Poor baby seemed so confused by it :\
I srue hope tomorrow is a better day.....

Wednesday, November 28, 2012

Uh oh, guys, we're in trouble now...


Somebody has figured out how to climb onto the sofa and sneaks up every chance she gets and runs back and forth on it. She thinks it quite unfair that I keep taking her down even though she has already fallen off once before I could get her off......If she wasn't such a daredevil, I wouldn't mind so much :p



She is an expert at looking all cute and innocent, though :p


And then she tries to hide and shows she is not so innocent after all :0)


When she realized I could still see her, she popped back up to say "H!"


Sunday, November 25, 2012

Have you taken the Pledge?

On November 30, 2009, a beautiful little girl named Cora was born.  Five short days later she would pass away at home, in her mother's arms, of an undiagnosed Congenital Heart Defect.  Cora's mother, Kristine, in honor of her little girl, is on a mission to spread awareness about CHD and has made it her goal that no other parent should have to get their child's diagnosis from the coroner.  November 30th has been declared Cora's Day in her hometown but Kristine wants to take things even further and make Cora's birthday a day of awareness.  So many people view CHD as a rare thing but it is the most common and birth defect.  CHD kills more than all childhood cancers combined.  And yet so many know so little about it......  Take the Pledge.  Demand a pulse ox screening at birth, let your pregnant friends know they should be asking for the screening, write your representatives and ask that they support having heart screenings to the newborn screening panel, learn the signs of a heart defect.  Heart defects are not just something that shows up at birth--it may take years or even decades before a heart defect is diagnosed and treated.  But knowledge truly is power--if you know what to look for and what to ask for, you may just save a life.

http://babyheartscreening.com/November30/  Click over and take a look at the Take the Pledge site :)   My grandmother had a heart baby who could not be saved.  We have come a long way in the last sixty years but there is still a long journey ahead--heart babies are still dying, some of them because they were not diagnosed.  Some day my own children may face this journey and I would hope by then the advances are even further along and diagnostics ensure all babies get treated asap.

Friday, November 23, 2012

Shameless request for help coming up :p

Sort of :p  It benefits you, too!  Have you heard of Swagbucks?  Thinking of trying it?  Use my referral link!  http://www.swagbucks.com/refer/NonnieL  If you sign up through my referral link, every time you earn points using the Swagbucks search engine, I get points, too, and you'll be helping me save up Amazon gift cards to buy things for the kids :p  At the moment, I am saving for a couple of books for Izzy that will help explain her surgery and scars in kid-language so as she gets older and starts wondering, she'll know.  And she'll be able to explain it to other kids so hopefully the teasing will be kept to a minimum when she starts school (I know, I know, it is years away but I'm a mom, it is my job to worry ahead of time and try to fix it before it is a problem).

As for the benefiting you part, I usually just use the Swagbucks search bar for my ordinary day-to-day stuff and pick up enough points for a gift card every few weeks.  If I complete some of the special offers, I can pick up a gift card every few days.  It all depends on how much time I feel like spending ;)  But, hey, even a small card every few weeks for stuff I do anyways is pretty darn great :p

And so ends my shameless plug for referrals :p

PS.  I think I am also supposed to state that my endorsement of Swagbucks in this post is in no way at the request of Swagbucks (although if they would give me points to make posts like this, it would be cool with me ;) ) and I'm not compensated and all that jazz.  Or at least I see bloggers making statements like that for both sponsored and unsponsered posting.  Hmmm...I wonder if a company ever does get mad if a blogger writes about a product/service without saying "this is all me!  They had nothing to do about it!"  Or are they just happy someone is broadcasting their company?  Anyone with experience care to answer my curiosity? 

Thursday, November 22, 2012

Friday, November 16, 2012

Starting to feel better

Izzy is finally starting to feel better--I was worried we would end up in hospital again but we managed to stay out!
My girl has been very cute and pathetic this last week.  All she wanted was for me to lay on the sofa so she could lay on top of me and doze and watch cartoons.  She loves to have PBS on but usually she ignores it until there is singing--she stops for singing so she can sing and dance along.  She gets excited when I say I'll put PBS on but doesn't really care that most of the time the tv is off so it is very unusual for her to bring me the remote and ask for "toos". 
Yesterday, she still felt bad enough that she wanted to mostly be still but she did sit in her brother's little black chair to watch about ten minutes and then she insisted I lay down so she could crawl up on me and take another nap lol. Improvement!

Tuesday, November 13, 2012

This is a few days ago--we aren't getting too many smiles right now because she is sick and oh-so-miserable :(

Wednesday, November 7, 2012

Everything went well and we are home!
Here is a groggy post op photo :)

I do not like the memories being on the surgical floor again brings :/
Surgery day for Bryce--good thoughts!

Monday, November 5, 2012

Adam Reed Tucker

We went back to the Lego Exhibit at the museum on Sunday so S could get an autograph :)  He was so excited and brought his very favorite Lego book (hardcover with six stories in it).  He was talkative in line but as soon as he was in front of Lego Master Builder Adam Reed Tucker he was starstruck and couldn't speak.  It was seriously cute.  I told ART S was a bit nervous and he was really nice and told S to keep building bc that's the best way to become a master builder (S's current career goal).  Once we were away from ART, S talked up a storm about him lol.
The boys both built some Lego buildings to go in the City at the museum and then we had time for some trains, planes, and automobiles before we left.
Today was Izzy's first swim lesson and she loved it :)  She was practicing in the bathtub tonight :D




Saturday, November 3, 2012

It has been a busy but fun today and I am looking forward to a relaxing movie night to rest after all our busyness!  
First the boys had their very first swim lesson.  B is fearless and did awesome.  S is our worrier and was a bit apprehensive but he tried everything his teacher asked and I'll bet he will do great next week.
Next up was a factory tour to see pickup trucks being made.  It was a HUGE hit with all three kids.  Iz loved to see all the machines :)  The factory has a "living roof" and the boys loved the exhibits showing how its done.  They also loved the porous asphalt display and turned the water on and off as long as we would let them :p
Last stop was to see a Lego architecture exhibit and the boys took a pic with the giant legos :p


Friday, November 2, 2012

Thursday, November 1, 2012

You almost had a real post...

...but I am getting error messages when I try to post from the computer so you get a quickie phone post instead. 
B had his ENT appointment and is scheduled for surgery on Wednesday.  Since his last appointment,  he's had yet another double ear infection plus his ears are full of fluid again and its keeping his eardrums from working properly.  So tubes it is.
I keep being told having been through OHS, this should be no big deal.  It feels like a big scary deal to me.  Sure, the worries are different but in the end it comes down to the fact that my little guy, who has never even needed a trip to the hospital before, will be under anesthesia.   This time around,  it is the anesthesia that is the scary part!
But hopefully B will finally be able to hear properly! 
After his appointment,  we had a fun day at the museum :)

Wednesday, October 17, 2012

Please pass along!



We are working with the CDC to help gather positive newborn screening stories. The stories will be used on their website in honor of the 50th Anniversary of newborn screening. Please consider sharing! If you are interested please email Jill Levy-Fisch. Jill@savebabies.org

Monday, October 15, 2012

The Littles

I think preschool has been a wonderful thing for my Littles :)  Yes, only B is going but I think the time apart has really made the relationship between B and Iz a lot better--there is less fighting, less jealousy, less pouting when one gets attention.  Sure, there is still some, but I have a lot more quiet moments where they are quite happily playing together or giving each other hugs or just snuggling.  Being together all the time made it hard for them to enjoy each other.  B goes off and has fun for half the day and Miss Iz gets some alone time and then they play:


Wednesday, October 3, 2012

Life is exhausting...


After Iz's last cardiology appointment, where she got the all-clear to do some more "normal" things, we joined a gym. Its been a long time since I regularly have gone to one but with three kids underfoot, trying to do it at home just wasn't cutting it ;) We picked a place with childcare and I try to go most mornings after dropping S off at school since I only have Iz with me (B is in preschool four mornings a week). Iz LOVES going. She gets so excited when she sees that we are turning into the parking lot. She really likes the two ladies who work there in the mornings. She can't wait to get down and play with all the toys and crawl around and check out who else is there :p Today, she even went so far as to ask one of the ladies to rub her scar :p Five months ago, she had a panic attack (literally) if I went to the bathroom and now look at her--hanging out in the childcare room for an hour or so :)

And of course her hard morning of playing means she needs a really good nap when we get home ;)

Sunday, September 9, 2012

The Birthday Girl

A year ago today, I went in for my regularly scheduled appointment at Maternal Fetal Medicine for one last ultrasound before Iz was scheduled to be born. It was Friday morning and I had just been released from L&D the night before where I had been admitted Wednesday morning for abnormal lab work. They had run a bunch of labs, monitored us overnight, treated me for fetal tachycardia that they never could explain, and then discharged me when everything came up normal again. MFM was surprised to see me because they figured having spent the past two days in the hospital being monitored, I would skip my appointment. We did my NST and headed for ultrasound and within moments we were being ushered out of the office and told to go straight for the hospital, to not even stop for a coffee (for the husband), and to please hurry. My amniotic fluid had gone down dangerously low and Iz needed to be born on the ninth instead of the twelfth. It wasn't a case of she must come out right now but it was a case of she must be monitored immediately while we wait in case it does become a case of RIGHT NOW.

So off we went and we waited. And waited. And waited. Originally, we were just waiting for an eight hour window since I had last eaten but we kept getting bumped for emergency c-sections. I was hungry and uncomfortable (those beds in pre-op? awful awful things.....) but I was glad to not be an emergency--meant my girl was doing ok in there, despite the problems (kinda prophetic, huh? We would spend months being glad that while things were bad, they weren't as bad as they could be....). Finally, at 7:52pm all 7lbs 8oz 19inches of her was born and we had many cuddles :) It would be nearly twelve hours before someone would say the words "heart murmur" to us and two days before the words "open heart surgery" were first heard. For those few hours that closed out the ninth, though, we were getting to know this perfect little being who was a champion nurser and cuddler with the pink skin and blue eyes and dark hair.



One year later and she has lived through and conquered more than some people do in a lifetime and I am in awe of her. Heart failure, failure to thrive, open heart surgery, recovery. For the moment, she is doing great and that is enough. Whatever problems may arise in the future, whatever complications or delays may or may not happen, they are something to worry about another day. Today was all about doing the things Iz likes most :)

First up, her favorite meal of the day--breakfast. We took her out and she enjoyed packing away more food than normal :p She usually sticks to eggs and toast or pancakes but today she was feeling adventurous and she snitched bacon off my plate and became a fan, she tried a couple kinds of sausage, she ate some quiche, she tried some yogurt again (last time she was so not a fan, this time she asked for more), and some ham (which she does like but for dinner or lunch).

Next up was the zoo :) She loves activities that involve being pushed around in her stroller LOL

Today was also the zoo's Day of Honor so we got to see firefighters, police, military dogs, the navy, the marines and I am sure there are more I am forgetting. Iz flirted with everyone and the boys enjoyed getting into every vehicle they could ;)

Iz's favorite part of the zoo has always been the elephants and our zoo has four of them so we spent a lot of time watching them :) Usually if we stop walking, she will squawk at us to get moving but if there are elephants, she will happily sit there and just watch.

She slept all the way home :) Being pushed around looking at animals is exhausting!

Next activity was to play in the yard. She loves to try to climb her brother's toddler slide and to crawl around and to try and pick my tomatoes :p

Next stop was Grandma and Grandpa's for some BBQ and then home for presents!

She had lots of help from her brothers ;)

And in the end only really cared about the ribbons.....

I think the whole cake thing may have scared her

But before we could even get her dress off, she had leaned forward and helped herself to a big handful of cake :p She was quite mad at us for cleaning her hands so we could get her dress off unstained :p A piece of cake calmed her right down, though




Happy 1st Birthday!


Tuesday, September 4, 2012

This was the best first day of school photo I could get--B was just too excited for silly things like photos :p

Tuesday, August 28, 2012

One week to go.....


These two guys have been busy fighting lately :p Every so often we get a few peaceful moments of play but I think they are ready for being together all day every day to end LOL They love each other but they need some time apart ;)

In one week, they both go off to school, S to the second grade and B to preschool. The house will be very very quiet...

Today we had B's preschool orientation and he was so excited :) He remembered his teacher from our visit last spring and he remembered the toys he liked in her classroom :p He had fun showing his Dad all over while I filled out the rest of his paperwork. He got a tour of the bus he will be riding and we met his bus drivers (two) and he cried when it was time to leave :p He was ready to say good-bye to us and stay!

The first day of school will be busy, though--S has an appointment with the orthopedist to get his cast (red) taken off for x-rays and then get a cast put back on (unless he needs surgery. Fingers crossed that he does not) immediately after school. That will take hours and I am hoping my parents can take B after preschool so I don't have to drag him through all of that appointment :p Iz is much easier to entertain than B is :p