Parker's morning

In trying to understand my son's newest behavior antics, I have tried putting myself in his shoes. I have recreated Parker's morning for you - from his point of view. Here we go:

"It's mom! I definately heard her open the closet door"

- stands up -

"Mom, come get me! Mom, come here! Mom, I'm up! Where are you going? Come get me first WAAAAAAAAAHHHHH"

- starts to cry like leaving him in his crib is something I do routinely -

"Oh good! You're back! Hi! Your hair looks fantastic! I need to pull it! No? Ok, well let me stick my finger in your mouth and check out how your teeth are doing. No? What's your idea for something to do? Nooo I don't waaaaannnaa change my diaper!"

"Let me have that destin cream. And I want some wipes, give me the wipes. Look! I found the nail clippers you were looking for last night! Give that back I was playing with it! Ok I'm done doing this. Let's get up and play. Let me stand up!!! Move your hands and let me get up! I don't want to wear those pants. And I don't want to wear that shirt. I would like to eat these shoes though, these are great! Give them back!"

- Moves out to the living room to get our coats. Jon, unfortunately for him, is in bed and trying to sleep still -

"DAD! Mom, it's Dad! Hi Dad! Look, see how close I am to your face! Where do these two holes in your nose go to, let feel in there for just a sec... no? Ok, Well, I'm just going to climb over here and LOOK! IT'S THE LAP TOP!!!!!!!!! This is terrific because I have been trying to get my hands on that for weeks now and here it is! Right in front of me - NOOOO I was playing with that! You've got to be kidding me!! I dont wwwwwwwwaaaaaaaaaannnnnnnaaaaaaa put my coat on!!! Bye Dad!"

- at work -

"Look! It's that dog Red Fred! Come here Red Fred, let me take a look in your ears for a minute! Man, I just love this dog! Mom! Look how his hair just comes out when I pull it! No? Ok, hey hey hey, it's the remote! Let me just push this button here and HOT DOG! Look at these channels changing now! No? Well, I see that you have left the cable box uncovered so you know I'm just going to go over there and push those buttons. What? Am I not supposed to be playing with this?"

"Stephan is up! Let me just turn my back so mom can't see me do THIS! HA HA HA This cracks me up! What a baby, a little tug on the hair and he crumbles. No? What? What are you doing? No, don't hold me down. OH MY GOSH I'LL NEVER MOVE AGAIN!! HEART PALPATATIONS MOM!! I CAN FEEL MY HEART BEAT! I'M PANICING NOW. I CAN'T MOVE! Whew! Ok that was scary. Where did Stephan go? Double or nothin' he cries again!"

"Breakfast time! Oh I love waffles. But this piece can go on the floor. Not this one. This one can. Not this one. This one. Oh this one can go in Stephan's hair and while I'm there you know I have to pull it again. Ha ha ha. This is great! No?"

"I'm getting tired. Mom, I'm getting tired. Hello??? Well what if I scream and roll around on the floor for a bit. Now do you see that I am tired!? Wait, oh yeah, I need to go to the bathroom first. Oh and my teeth hurt so I would love some of that stuff that makes me not feel my face. Great! Thanks. Well done. Ok - to bed!! Whew, I'm beat. "

It's hard raising a kid with a free will

Back in the day - well back a week ago - Parker and I worked together like clockwork! I read the books and made educated decisions on what he should eat, when he should sleep, what he should play with and how best to mold his behavior and so he ate what I put in front of him, he slept when I laid him down and he was playful and naturally curious with just enough physical limitations to keep him safe. "This is easy" I have been saying to myself for the past 10 months. I was arrogant. "How do people mess this up?" I thought to myself - proud of the angelic child we were raising. Would you believe that I have even put away my parenting books. Oh - I was THAT sure of myself.

With my head hung in shame I am writing to admit, sincerely, I was wrong.

Last night, after two hours of fighting with him to sleep, I brought out a book that teaches parents how to help their baby develop into a "delightful two year old". It talks mostly about behavior issues, specific ways to play with a baby, the correct ammount of attention...you get the idea. I don't know what I am doing, I figure a delightful two year old seems like a good goal and so I read what this guy says! Anyway, APPARENTLY 8 months to 14 months is "make it or break it" time according to this guy. CAN YOU IMAGINE IF I HAD NOT OPENED THIS BOOK? I wouldn't have known! He says that every action and reaction Jon and I make as parents for the next 4 months will make him an angel or demon! PRESSURE folks - lots of pressure. Oh I was sweating! Jon was laughing at me in the corner of the room as I read off the behaviors we need to "nip in the bud" right now. (How, Emily, do you "nip" behaviors in a 10 month old? Good question, you hold him down so he can't move for 10 seconds after an offense such as pulling hair or biting. Babies "value the ability to move" he says.)
Apparently Parker has a "free will" just like me. He has figured out that he does not have to do what I want him to do. It is fun, I guess, to throw his food on the floor - yes even food he likes - pull hair, tackle people, throw temper tantrums and bang his face on the floor so I have to pick him up, protest sleeping, putting his socks, pants, coats, even diapers on, and he newest "game" is scrunching his head down to his chest so hard that he can't breathe and he turns red. Where did this come from?! And so we argue.

Where I once spent my day surrounding him with phrases like "come sit in my lap sweet heart" and "you are such a good eater love" now it's "Parker don't pull his hair" "Parker stop screaming" "Parker don't unplug that" "Parker you are going to hurt yourself" "Parker I'm taking this away from you" "No Parker" "You can't do that either Parker".

Whew - I get tired just writing it! I was venting to my mom about it this morning - she cracking up inside, I heard it - and she told me "this won't last forever, it's just a phase". The thing is, I think she was lying to me. I have this eerie feeling that this is just getting started. She knows it alright. Maybe she is scared I will sell him to the gypsies before Christmas and he won't be there? But I know she knows something!

Here is the crazy thing. I am tired. I look awful. I feel guilty for the being the "no" police all day long. I look forward to my hour at the end of the day when he is asleep and I can talk and sound like something other than an auctioneer. BUT last night, when he did finally go to sleep, Jon called me into his room to look at him because he was sleeping in "such a cute little ball" and we stood there for a few minutes discussing how cute he is and (and this is the crazy part) in the back of my mind, or maybe deep in my heart, I heard a voice say "Let's wake him up and play some more!" I LOVE this kid. Truly, love is not strong enough. The best part of my day is still waking him up in the morning and seeing his smile and his messy hair and crusty little face. And I know I get to do it all over again today.

Mystery solved

The mystery of Parker's sleeping craziness is solved! We took him to the doctor this morning and he has a bad cold and ... get ready for this...4 dang teeth coming in!! He had two come in last week - and now he has 4 more! POOR kid!
Now that we have figured that out I have given him orajel to numb his little gums and he has been back to his old self! He has even gone to sleep twice today without a fight!! WOOHOO!
If only babies could TALK or point or somehow indicate blinding pain in their mouths so that desperate mama's and daddy's could DO something about it besides rock for hours saying "PLEASE JUST FALL ASLEEP". Because THAT doesn't work.

Mama Guilt

We have the catheter behind us! Woohoo!!! We feel like it was good news even though the balloon did not work. We are just thrilled that we do NOT have a surgery date!! Our families have all gone home and we are getting back to our regular life after all of the "excitement" of last week.
Since the procedure, Parker has been screaming for an hour or longer any time he has to go to sleep. We used to be able to just lay him down and walk out of the room and he would fall asleep within 10 minutes or so. Well, the last two days have been a bedtime nightmare around here. He totally skipped his nap yesterday because we were at Jon's grandfather's house and we decided to spare the house the drama. We figured when we came home he would crash. wrong. He was up until 9!!! Then he woke up at 2:30 and did not go back to sleep until 4!!!! And he is not just in there whinning the "I'm tired and I can't get comfortable" cry. It's a new "I'm shreeeeeakkkking and you don't know why! You can just let me lie here alone if you want to, but keep in mind that I have multiple heart defects, possible teeth coming in and oh yeah, you did just hand me over to a man who stuck a tube up my leg and into my HEART but not before you held me down while they took my blood..but sure you just let me scream in here by myself. I'm probably fine" howel that we can not ignore. Needless to say - we are exhausted this morning.
It's a good thing I've found coffee! Poor Jon.

ps - the photo is Parker about 5 minutes after his versed shot (nice and relaxed)

Remember when...

Research

There is an organization called Saving Little Hearts that is dedicated to congenital heart defects and I invite you to go to their website: savinglittlehearts.com and snoop around. It is an amazing resource center! There is something in particular I wanted to tell you about!

As I mentioned in a previous post, there is not much happening to improve prenatal and post partum screening in newborns to help these babies. One of the tests that would be noninvasive, quick and cheap to do is pulse oximetry screening. All a nurse would do is wrap a little wire around the toe of a newborn baby and in a instant, she would know exactly how much oxygen the baby is getting. For cyanotic babies, oxygen levels are not 100. Parker Jay scored an 8 on his apgar scores, he was not blue, he did not look like he had a heart defect right after birth. When they put on the pulse ox, it was 80. Something was clearly wrong. We already knew of course, but what if we hadnt - would they have sent us home?

In Tennessee, the "Tennessee Task Force on Screening Newborn Infants for Critical Congenital Heart Defects met and reviewed what was known on this topic and they estimated the incidence of critical congenital heart disease is 170 in 100,000 live births, and of those, 60 infants have the potential for shock or death if the diagnosis is missed. They also found that the diagnosis is missed in 9 infants by fetal ultrasound assessment and discharge examination. These babies might have been diagnosed by a screening program. Getting the right diagnosis in these infants before discharge could spare many of them death or neurologic problems." A bill was passed on June 11, 2007 to allow further study and as of Oct. 2007, several hospitals in Tennessee are testing every baby before they are discharged, a few that have the equipent to test every baby in place, and also hospitals waiting for doctors to come by and set up the program. That is FANTASTIC!

On the Saving Little Hearts website is a link under "News" called "Expanding Newborn Screening Appeal" and there is a format for a letter to send to The American Board of Pediatrics and the American Academy of Pediatrics. The addresses are right on the page. All you have to do is print it off, and stick it in the mail! I think there is an electronic page as well.

I LOVE when there is something to do in a situation when I feel like I have no control! I feel like the best thing I can do for Parker is to make sure he has the best doctors and the best care possible. I am now finding out that there are things I can do to support research so that the doctors have the information they need to do their best!

Gotta love kids!

Ok, this might be the funniest thing I have read in a LONG time. These are questions about moms answered by 2nd graders!


Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my Mom just the same like he made me. He just used bigger parts.

What ingredients are mothers made of ?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you your mother and not some other mom?
1. We're related.
2. God knew she likes me a lot more than other people's moms like me.

What kind of little girl was your mom?
1. My Mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss , but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess Mom is, but only because she has a lot more to do than dad.


What's the difference between moms & dads?
1. Moms work at work and work at home and dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power cause that's who you got to ask if you want to sleep over at your friend's.
4. Moms have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my mom smarter. Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

Because hearts are important too

Research has shown that Congentital Heart Defects are the number one birth defect in our country and it has also shown that research on congenital hearts is unbelievably underfunded.



Early detection gives parents the chance to have their baby at the right hospital surrounded by the right doctors and that can make all the difference in the world. I remember during my pregnancy how many times I was offered a procedure that would test for a chromosomal defect and really, heart defects are much much more common than chromosomal abnormalities. As of January 2007 the American College of Obstetrician and Gynecologists will recomend prenatal screening for down sydrome for every woman regardless of age. Unfortunately, similiar procedures in relation to heart defects are still not available.

Here are some other facts about Congenital Heart Defects that I found amazing. This can be found on It's My Heart's website.

* Congenital Heart Defects are the #1 birth defect.
Source: March of Dimes

* Congenital Heart Defects are the #1 cause of birth defect related deaths.
Source: March of Dimes

* About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)
Source: Children's Heart Foundation

* Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers COMBINED, yet funding for pediatric cancer research is five times higher than funding for CHD.
Source: Children's Heart Foundation.

* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.
Source: Children’s Heart Foundation.

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year.
Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

4-8 percent born with CHD have Hypoplastic Left Heart Syndrome.
4-10 percent born with CHD have Atrioventricular Septal Defects.
8-11 percent born with CHD have Coarctation of the Aorta.
9-14 percent born with CHD have Tetralogy of Fallot.
10-11 percent born with CHD have Transposition of the Great Arteries. (PARKER)
14-16 percent born with CHD have Ventricular Septal Defects. (PARKER)

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.
Source: March of Dimes

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
Source: March of Dimes

Pediatric Cardiothoracic Surgery has improved drastically in the last fifty years. The strides they have made and the diseases they can now fix are truly amazing. 30 years ago babies born with TGA would have died in a matter of days. It is awesome that there is still more room to improve things in this "heart world". I think it is really important to raise awareness of CHDs. I know that when I found out about Parker's heart I had never heard of anyone who had a heart defect. I don't think I had ever considered that babies had heart problems. Anyways, it all starts with education and I am hoping that by putting Parker's story out here I can help to bring awareness to congenital heart defects and maybe if there is enough talk by enough people then there can be some changes in prenatal and post partum testing in every infant. No family should have to hear "We don't know what else to do".

Halloween 1957

Happy Halloween!
I found some Halloween - Heart trivia for you! Because I can relate anything to the heart! I found this article from a friend of mine, a fellow TGA Mama, and wanted to pass on the information! This is how the portable pacemaker came about!

A little backround on what was going on in Cardiac Surgery World: they had just started using pacemakers to help kids recover from open heart surgery. They plugged into the wall socket and were pretty big.


Well - on Halloween night in 1957 there was a HUGE blackout affecting most of Minnesota and the western part of Wisconsin. There was no power for 3 hours. "For most, the blackout was just an inconvenience. But for a few young heart patients connected to pacemakers it was life threatening". Jack Norton, a historian, found a newpaper article that described what went on in the hospital during that blackout.

"They had police officers pull up to the side of the surgery suites and simply turn on their headlights to provide light for the surgeons. They scrambled to try to keep blood cold by grabbing ice from various coolers to stick in the blood refrigerator. Doctors scrambled to find drugs to keep their patients hearts pumping" he recalls.

Not one child survived.



The trauma of that event rattled pioneering heart surgery C Walter Lillehei. The next day in the hospital hallway he flagged down Early Bakken, an electrical engineer who was working with hospital surgeons on new medical devices - working OUT OF HIS GARAGE. The two agreed that there needed to be a way to back up the pacemakers when there was a power failure. The children would have survived the three hours had the pacemakers worked.

Lillehei asked Bakken if he knew how to make a pacemaker than ran on a battery. After some tweaking they came up with a device that was about the size of a paperback book and fit in the patients bed. Bakken tested it out on a lab dog and saw that it worked. He said "Ok now, this seems to work so I'll go back to my garage and make a pacemaker for humans".

But he never got the chance! When Bakken went to work the next day, he saw Lilliehei using it in the recovery room of a CHILD. Bakken was not convinced that it was ready for human use yet and questioned Lillehei about why he didn't wait for the "people version" of the pacemaker.

Lillehei says "As long as this battery operated pacemaker is avaiable, I'm not going to risk using another child to a power failure".

Can you imagine if that happened now?! It wouldn't! Too many politics and law suits! Too bad - I wonder how much creativity is being shut down because of red tape!