Information Overload!

While we are trying to figure out all the details with having a child with CHD (congenital heart defect), we've been filling out tons of paperwork for medical assistance, scouring blogs, websites, and attempting to get our hands on books that have CHD as a topic. So far, our local public library has nada.

I've come across some interesting tidbits of information though and will answer a few questions for people that have asked us.

Q: When does it happen?
 According to the March of Dimes website 1 in 125 babies are born with CHD and they are formed within the first 8 weeks of gestation. So, essentially the mama doesn't have any control over whether or not her baby is going to have CHD. You've barely peed on a stick and announced to a few people at that point you are even pregnant.  No amount of prenatal vitamins can prevent this. In up to 90% of babies born with CHD, there is NO KNOWN cause.

Now, if you have heart issues in your family tree, that can contribute to raising your risk factor. We found out after Miles was born that we have minor heart issues on both the maternal and paternal sides. If you have seizures & take anti-seizure meds, rubella, or PKU that can increase your risk factor also.  Since Miles has CHD, his children will be at a higher risk (about 50%) of having one of them.

Q: What kind does he have again and how often does it happen?
Miles has Atrioventricular Septal Defect and it occurs in approximately 2 out of 10,000 live births. It effects both boys and girls equally. It is one of the more complex, but easily repaired, CHD's since it effects 2 portions of his heart.

Q: Did your age have anything to do with it?
Both Dale & I are 42; 41 for the majority of the pregnancy. Besides having older eggs, we were good to go. Age is actually NOT a factor for CHD. 

Q:  Did you have any ultrasounds/sonograms during the pregnancy?
Yes, we actually had 4 of them! Two were in the first trimester, one in the second, and the final at 39 weeks 6 days gestation (one day prior to my due date). NONE of the sonos showed any heart issues.

Q: Will it ever go away?
Well, this is a hard question to answer. Yes, the higher risk of congestive heart failure will drastically go down after his open heart surgery (OHS) since his heart will be repaired in both areas, but it doesn't actually make it go away. He will always be a boy with CHD.

Q: How many different heart issues are associated with CHD?
This astounded me when I read this!  There are over 40!!  Twice as many children die with CHD each year than all the childhood cancers combined together. Yet, there is little to NO funding available for research. According to Children's Heart Foundation, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research. Likewise in 2007, the National Institutes of Health's NHLBI (National Heart, Lung and Blood Institute) allocated less than 3% of every dollar invested in research to any Pediatric cardiovascular research.

                                                     Liam 3, Miles 7 weeks, & Mary
                                                             cell phone pic 4/29/2013
 

14 days

A few days after Miles was born, I noticed that his mouth/nose would go light white or blue-ish anytime he nurses. He would have labored breathing and fall asleep way too early during the nursing. I brought it up to Dale, who didn't really notice it, and my mom.

 

We watched it for a few days and  I told Dale to remind me to bring it up at our doc appointment for Miles when he was 1 week. Both of us totally forgot--DUH!!

 

I kept watching it and it just kept nagging at me, so we called the pediatrician when he was 2 weeks & he told us to go to Cooks' ER. We were coming back from Dallas and had to head home to get more stuff (diapers, etc) before heading to the ER.

 

Once we get there, the ER doc asks all the basic questions about when, where, etc. with the blueing (which is called cyanosis) and he thought he heard a slight murmur. Both my mom & Dale's dad had one & grew out of it. The ER doc wanted to do an ECHO, EKG, and get a chest Xray to make sure his lungs were clear.

 

 

 

We do all the testing and wait. We waited and waited and waited and we joked that either a) they were backed up or b) we were going to get some really bad news. A few minutes later, the nurse comes in and tells us that they are super behind & the doc should be in soon. WHEW! That made us feel soo much better.

 

When the doc came in, he had a laptop with him and my heart just sank. He told us that Miles had not one, but two holes in his heart and that he would have to have open heart surgery to repair them. He gave us several names of the defect and asked if we had any questions. Neither one of us did. Miles was 14 days old.

 

So, after that, we called the cardiologist they recommended and made an appointment for the first available one.

 

We went and they did a review of the tests and he told us that one hole was 7mm and the other was much smaller. Since they didn't close by 14 days, they wouldn't and surgery is definite.

Our job right now is to keep Miles healthy and he can't be around any sick or germy people. He is doing well and gaining weight right now. If he starts to slow his gaining or doesn't gain, we'll have to do the surgery much sooner than the 6 month mark which was given to us. That puts us at the end of summer in August/September.

 

His heart defect is known as Endocushion Cardio Defect or Atrial Septal Defect (ASD) or Artioventricular Canal Defect.  Miles has two holes, one in the atrial portion of the heart and one in the ventricular part. This means that blood (oxygenated and nonoxygenated) mixes and moves freely between the chambers. It is the most common (or second most common) heart defect and is associated with children with Down's Syndrome. Miles does not have DS.

 

Miles' heart defect is primum meaning it will not close on it's own and partial meaning there is only one defect.

 

Here is a normal heart:

In a normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped through the pulmonary artery into the lungs, where it receives oxygen. And oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped through the aorta out to the body. 

 

 

Here is Miles' heart:

 

 

Another way to look at the heart differences side by side:

 

 

 

So, we watch and wait and pray for health and peace for Miles. It is hard to watch him struggle already and not be able to do anything about it. We do have to worry about congestive heart failure, but not in the sense of his heart will stop. We have to worry about his heart over working and the blood will mix too much; which will not oxygenate his body and organs.

 

Here are a few websites if you want to learn more:
Mayo Clinic

Boston's Children's Hospital
David Darling
Cook's Children's Hospital

 

He will be 4 weeks on Tuesday.

 

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Seven Gifts: Good & Perfect

I've been reading a few blogs and have come across one that always catches my heart. It is called A Holy Experience. I'm not the most religious person, nor even the most Christian, but this family amazes me. They live SOOO different that I. They are a farmer family.

Anyways, she posted a link for a free download called 7 Gifts, which is based off the book entitled One Thousand Gifts by Ann Voskamp. I downloaded and printed right away. It is a week's worth of spaces you can fill in and record what you are most thankful for.

Here are mine:
Sunday
brushing my teeth, text messages, people that disagree with my parenting style in public and feel the need to comment to me, cake, a husband that truly loves me, lip balm and witnessing miracles as they are born~

Monday
cream cheese, a happy morning, fluffy towels, being wanted, completing tasks, friends, email

Tuesday
great preschool teachers, loyalty, follow through, a good book, great makeup, beautiful children, picnics

Wednesday
Grayson's thank you letter to his 4th grade teacher (which made me cry), the sunset, Liam's laughter and "what's that", Brian's eyes--they are the most expressive eyes I've ever seen, Dale's job, being able to stay at home, Facebook

Thursday
hot showers, baby hugs & kisses, pitter patter of baby feet down the hallway, running vehicles, green smoothies, healthy children and prayer

Friday
flip flops, dishwashers, clean bathrooms, sleepy children, drums played well, Dale giving me a moment to breathe and sleeping in

As you can see, some a frivalous, some are serious, some are yummy, but they are all things I am truly thankful for. They are helping me live an emptier, but fuller life.

Sleep

As you know, I have three young boys. They really are the loves of my life, but I am a busy mom. JUST like every other mom I know. I do stuff. I attempt to keep a clean house, I volunteer at preschool and public school, I read, I spend way too much time on the computer and I actually cook meals five nights a week.

The one thing I miss terribly is sleep. I can't seem to get anything checked off my list during the day when the boys are busy and here. They go to sleep, around 8:30pm, and I get my time to do whatever. I normally do housework and catch up on my t.v.

That brings me back to sleep. Grayson started sleeping through the night the night after he stopped breastfeeding-12 months and 1 day. Brian is 4 and still wakes up at least once per night. He is not breastfeeding. Liam wakes up-and I am very serious when I type this-at least once every 2 hours. He is breastfeeding. I have tried a few things to help him sleep better, but nothing is working.

I AM TIRED!! I haven't slept more than 4 hours straight in the past freaking 4 years. I know this is a season in my life, but I hope that it changes soon. I feel that I am not being my best ME because of it. This is a small complaint compared to dealing with other BIG issues like cancer or a job loss, but it effects me daily.

Now, I am off to bed for some needed sleep:)

Getting through the week

Sometimes being a mom is hard and sometimes it is such a piece of cake. Seriously, you just never know what kind of day it is until your feet hit the floor in the morning. Add in the chaos of the fur babies & well, you get the picture.

I do love being a mom and I think, on most days, I am a decent mom overall. I make tons of mistakes, know how to apologize and have a thick skin that can take alot. I also love my boys, my three fellas, soo much.

This is all leading up to our boy #2. He is 4 and has an older brother to look up to and is an older brother for another to look up to. Some days it is just too much for him. I can't imagine how he feels to be put in the middle and want to do everything his bigger brother is doing and then want to do everything his baby brother is doing. Frustrating for sure.

I've been reading a book entitled, Love & Logic. It is pretty good and has given me a few tips and tricks to work with this beautifully passionate young child. His temper is pure Irish (thanks Grandma) and bubbles over quickly, but is such a loving child at the same time. I can't imagine life with out him.

In the truck today, we saw an ambulance and a fire truck with lights flashing and the sirens blaring. He quickly said we needed to say a prayer for the people and the firefighters. We did and Brian ended the prayer with, "In the name of the Father, the Sonners and the Holdy Spirit. The End."

That's my 4 year old~

Bluebonnets

The annual bluebonnet time was leaving us quickly. I have this THING that I have to have the boys pictures in the bluebonnets every year. So, Dale & I grab the kids after school and quickly pick out somewhat coordinating outfits from their closets and drive to the wildflower patch.
Of course, no one wants their picture taken and I soon turn into THAT mom...you know the one whose head starts turning and you laugh because her kids aren't doing what they are supposed to do and they are all crossed eyed!
I quickly realize that it just isn't going to happen and figure I don't need magazine worthy images. I just want ONE picture of each kid. Pressure off and now the camera stops working. Totally stops.
I check everything: battery, memory card, the other memory card, etc. Nada. Oh well. I feel bad, but I can't do anything about it. We go home & I'm steaming in the front seat because I don't want a broken camera.
We get home, eat dinner and I try the camera again. IT WORKS!!! We quickly drive back to the field and realize every other family in Denton is doing the same thing. Just one for each with no boogies is my mantra. So, while these aren't magazine worthy-they show an accurate account of just how darn cute and handsome my three fellas really are and that, my friends, is what really matters in the end.

13 months...

Liam is 13 months old & we're more in love with him now than ever. He walks, talks, crawls, climbs, run, cries, hugs, hits, kicks, kisses, nurses, sleeps, plays, reads and does everything else a baby is supposed to do.

Brian is 4 years old and we're more in love with him now than ever. He does everything too...but just a bit louder and wilder.

Grayson is 10 years old and we're more in love with him now than ever. He does everything too...but quieter and "funner".

Pics to come soon...

SNOW DAYS....Heaven or Hell???

While I am all about snow and fun, being forced to be in the house for 3 days with 3 kids, 2 dogs, 2 cats and hubby has brought me to my knees at times. I am a recluse and love being inside, but the deals is I get to pick when I leave. In Texas, it is the weather that is choosing for me. That sucks. 

We haven't had the rolling blackouts like several of my friends have had. They are just across town too.
Maybe it would be easier if we all were felling 100% too. We're dealing with sniffles/coughs and a touch of cabin fever.

Oh, Mother Nature, bring my sun back. Then I will complain it is too hot...just like a Texan should.



This much snow is just wrong!

THE 2011 Decluttering Challenge!!

Hello. My name is Mary and I am a piler. Here is how I got started on decluttering!

I am a huge Mothering.com forum fan. I've been posting there for several years and always checked out the birth & pregnancy stuff. With Brian's pregnancy I noticed they had decluttering & simplifying your life forum. I checked in with that a time or two & didn't think much of it. We collected more stuff for baby and for the house.

Then I got pregnant with Liam. I had HUGE nesting issues with this pregnancy and just had to get stuff out of my house. I felt closed in and smothered. I remembered seeing that forum and immediately signed up for the 2010 things out of your house in 2010 challenge.

Realistically, that is a mere 5.5 things to purge on a daily basis. Well, you know that life happens and along with that comes stuff to deal with. Some days I purged like crazy and other days it just plain didn't happen.
As I got bigger, my list got longer and longer. The items got harder to find and to let go of.

I purged my house of 2013 items in 2010. I purged around 1,000 items of clothing between all 5 of us. Nothing was sacred...not even pictures and I realized that I still had MORE that needed to leave my house. This year, the bar is raised to 2011 items to be sold, trashed, donated, gifted or recycled.

I want a functioning, easy-to-clean house. One that where everything has a place and EVERYONE knows where to find it. I want that comfortable, beautiful, decluttered and CLEAN house that magazines showcase. Okay, that is a little too perfect, but it is a lofty ideal to shoot for. I don't want to have a 2012 aspiration for decluttering.

January is half over and I have purged approximately 440 things out of my home. Not bad for just 20 days in. I started a Facebook group and it has close to 40 women sharing the same goal. My piling habit ends. I am working with small area at a time and coming back to each area to double check.

 I am teaching my family to respect the things we have, make them last and to be resourceful and creative with the stuff we already have.