Wednesday, February 26, 2014

February 26, 2014 - Fabulously Five


Our Super Girl is 5 years old today.  Kristoffer says this does not surprise him: “She’s been with us 5 years! Of course she is 5!”  …while I am more mystified that not only has she been on the planet for 5 years but that WE have been PARENTS for that long.  There is just something BIG about such a solid number…half a decade!  Wow!

So she woke up this morning to our usual birthday party scene: decorations and balloons and presents!


 A very popular gift that she has been wanting for a whole year was a dinosaur watch, courtesy of my parents.  Last night she even came out of bed to ask me, "Are you sure I'm getting a watch...because you promised me when I turned 4 that I could have one on my fifth birthday!"
 Legos were also a big hit...
 And a new-to-her bike...hoping she properly learns to ride soon!
 Early morning builders...
 Breakfast candles :)
At school she got to raise the Danish flag and was sung to her by her friends (many times throughout the day I was told!).  She also chose to wear a new dress AND her dragon cloak.   I noticed how much more easily she could raise the flag this year by herself, while last year she needed a lot of help.





(dare I ask...best picture ever?!)
I came back to school after lunch to bring her chosen treat for her class:  everyone was to have one homemade chocolate chip cookie and one store-bought OREO.  She has had this vision for weeks, and was very pleased that it came true.  She was cute distributing cookies to her class.

At home she got to watch her new Dragon shows on DVD and play with her new Lego boat that Far came home from work early to help her build.  She had her chosen dinner of spaghetti with sauce and cheese and bacon and broccoli, and chocolate cupcakes with lots of frosting.




(Noah was so exhausted from Grace's birthday that he did not even make it to dessert!)
She also had (and also missed a few - sorry!!!) Skype/Facetime calls with family members around the world.  When she went to bed she said she was HAPPY (also it’s her second night sleeping in bunk beds with Noah in their “new” shared bedroom…more on that soon) and she LOVES BEING FIVE!  So all in all, a great day!


Now we are just gearing up for her dragon birthday party on Saturday, and then Mama will be ready to start taking it easy (also more on that soon).

I am impressed with how much she has changed and grown in the last year.  There are so many things about her that we love, it is hard to track them all.  But mostly I love that she is smart and funny, and is uniquely herself – loving dragons and dinosaurs and butterflies and Legos (that Mama wishes weren’t so girly) all at the same time.  I respect that Grace is quite in tune to other people's feelings and sensitivities (especially Noah's, actually), that she is a "welcomer" around new people, and that she is really learning to learn from her mistakes.  She is a really big girl now, and we feel so much joy from her and because of her, everyday.   She is our Amazing Grace – 5 years old!

Happy Birthday, Grace!
Love, Mama

Friday, February 14, 2014

February 14, 2014 - Day of Love

Today is the final day of CHD Awareness Week.  I am not sure that I shared anything new or particularly helpful compared to my first time around last year...but for me it was more about doing something at all because from all the way in Tanzania there isn't much support I can offer to the more active cause in America. If and when we live in the US again, I hope I can particpate in spreading CHD Awareness through the resources there.



But, as it is Valentine's Day as well, today is also about appreciating the people you love.  And while I know that Kyle didn't live very long and he wasn't very big, I did love him as I love all of my nieces and nephews.  Sooooo many people loved him and miss him.  27 days is not very many, but he was brave and strong and important and special.  He is my heart hero.  His life gave me a new and different perspective on my own life, and especially on the lives of my children and my other close loved ones.  With a new a baby on the way, I am praying for her good health all the time and know that I will appreciate the miracle of her life when she is born.


Rest in Peace, Sweet Kyle.  You are not forgotten.

I love you, 
Auntie Lisa   

Thursday, February 13, 2014

February 13, 2014 - Support CHD Awareness and Research


Today I am not linking to last year's post, I am copying and pasting directly from it because it is so important.  If CHD is a cause that you care about and you are able to give charitably, here are some ways in which you can support necessary research and/or people whose lives are affected by CHD.

  • The Children's Heart Foundation (CHF) is the United States' leading organization solely committed to funding life-saving research on CHD.  If you make a donation to CHF, over 75% of your donation directly funds research or research-education.  From 1996 to 2012, CHF has funded over $5.3 million to 52 research projects. 
  • You can also become a corporate partner of CHF or volunteer at a local chapter of CHF to help support local fundraising, awareness and advocacy activities.  
  • Write, call and visit your state legislators to ensure funding for the Congenital Heart Futures Act.
  • Share knowledge you have about CHD with your friends and family, including putting facts and resources on your social media for others to be exposed to.
  • Cardiac Kids is a Canadian volunteer organization raising funds to support children with CHD and their families.
  • Camp Taylor and Hope with Heart are American camps and Camp Oki is a Canadian camp for kids with heart defects. All camps could benefit from donations or volunteers.
  • Mended Little Hearts  and Little Hearts are non-profit organizations for families and caregivers of children with CHD to receive support, education and resources.  Donations help them support a large community of people affected by CHD.
If you know of any other ways for people to get involved with CHD, please leave a comment on this blog so that I can share them.  Thanks!

LMW

Wednesday, February 12, 2014

February 12, 2014 - CHD at the Olympics

Last year I listed a lot of "famous" people you might know of living with or who died from a CHD.  Another "famous" CHD survivor was competing in the Sochi Olympics this year.  American Snowboarder Shaun White had two open heart surgeries in his early years to repair a disorder called "Tetralogy of Fallot". (Sorry for him that he did not win a gold yesterday!) He has received criticism for not being a public figure to support fundraising and research for CHD...and he doesn't talk about it or use his celebrity to help the cause.  I'm not interested in making a statement about him (although of course it is too bad that he isn't willing to help!), but rather to make the statement that there are SO MANY PEOPLE living with CHDs.  You might know some people who have a CHD, but you might also have people in your life who have a CHD that you don't know about it.  I think it is actually pretty rare to find someone who isn't somehow connected to CHDs in some way.

The statistics that I've been posting are just very clear:  more children die from CHDs than all childhood cancers combined, but CHD research receives only a fraction of the funding that cancer research receives.  I am not at all begrudging the funding for childhood cancers...of course not!  But I do wish there was more attention for CHD research and to help families cope with CHD loss or survival. One week every year it is great to highlight this cause, but even better if it was receiving ongoing attention!



LMW 

Tuesday, February 11, 2014

February 11, 2014 - Causes of CHDs

As I wrote about last year here, it is very difficult to identify the causes of CHDs.  

Early detection is still the most important factor in an infant "heart warrior's" survival, so it is important for pregnant mothers to ask these questions below.

However, many babies with serious CHDS present to have normal, healthy hearts in utero.  This was the case for Kyle, and there was no reason to suspect that his heart was anything other than healthy.  Unfortunately, as with many birth defects, there is no way to tell until the baby is born, and even then it can prove to be extremely difficult to diagnose.  Because there is no easily identifiable cause of CHDs, there is no perfect way to detect or cure them either.  The very best thing new parents can do is have all relevant information, ask a lot of questions of their doctors and nurses, and pay very close attention to their baby's health and behavior.  

LMW

Monday, February 10, 2014

February 10, 2014 - CHD Pulse-Oximetry Screening


On this day last year, I wrote here about pulse-oximetry screenings for newborns. It cannot detect ALL CHDs (for example, Kyle passed his screening), but it can detect many CHDs before babies are ever sent home from the hospital. Pulse-oximetry screenings are not always mandatory, so it is definitely something to talk to your doctors about while you are in the hospital with your newborn.

This year, please visit this website to see a brief video about how pulse-oximetry screening works and why they are so important.  

To my fellow Americans: This image can tell you if your state in America has active pulse-oximetry screening legislation or not.  Please contact your Congress-person if pulse-oximetry screening is NOT active where you live!

LMW

Sunday, February 9, 2014

February 9, 2014 - CHD Signs & Symptoms

As I reported last year here, some people born with CHDs start showing symptoms as early as birth and others do not until older childhood or even adulthood.  It is important that new parents know, however, what might not be normal in their newborn just to be sure that everything is OK.

For example, I have just recently reconnected with a friend from high school whose daughter was born with some pretty critical CHDs.  Her conditions were detected early when at 23 hours old, her doctors and nurses noticed that they couldn't get a pulse in her lower extremities.  That lead to further testing and the discovery that she had an interrupted aortic arch, similar to Kyle's.  She was not without complications after her surgery to repair the arch, but she is still a fighting little "heart warrior" today.  

One of my closest friends recently had a baby girl who is perfectly healthy but had a low pulse-ox and was kept in the NICU until she was almost 3 weeks old before she should go home.  They had to make sure that her heart function and other organs were all OK before they could send her on her way. What a relief it was the day she was able to go home with her parents! 

I'm not writing this to sound scary, but with almost 1 in 100 babies born with some kind of CHD each year it is a reality that I think all parents should be aware of.  The more information you have, the more likely you are to be able to help your child.


LMW

Saturday, February 8, 2014

February 8, 2014 - Basic Facts about CHDs

For some basic facts about CHDs, please read last year's blog here or read the graphic below.
Thank you.
LMW


Friday, February 7, 2014

February 7, 2014 - CHD Awareness Week is Back

February is Heart Awareness Month and this particular week, February 7-14, is Congenital Heart Defect (CHD) Awareness Week. 

As you probably know, my newborn nephew Kyle passed away on October 7, 2012 from complications related to four CHDs he was born with.  In fact that was 16 months ago today, an anniversary I will never forget because I was in his hospital room with his parents when he died.  He was 27 days old.  

Last year I posted a series of (what I hope were) educational blogs about CHDs.  I have unfortunately not come up with anything more creative to do this year, so I will be resharing some of what I posted last year and if I can find anything new to share I will do that as well.  It is not very much - I certainly wish I could do more - but is a small gesture to show my sister and brother-in-law that I have not forgotten Kyle, I have not forgotten their grief, and I will continue to be an advocate for more CHD awareness and research so that other parents are spared the painful experience of losing their child.  With a baby on the way and Kyle always on my mind, it is a cause very close to my own heart.

To read last year's post sharing a little bit of information from the Congenital Heart Information Network, click here.


In loving memory of Kyle Michael,
LMW

Sunday, February 2, 2014

February 2, 2014 - 28 Weeks

Let's play a game where I give you the answers to the questions I was asked several time this week, and then you guess what the questions were.  Ready?  Ok!

1.  Nope...just one baby in there.
2. Nope...still 12 weeks to go! [although technically 11 weeks from tomorrow my c-section is scheduled)
3.  Nope...not leaving Dar for 6 1/2 weeks yet!

So I guess if I am good at taking a hint, I am really big and people think I'm having multiples or giving birth tomorrow.  Awesome :)  I just keep telling myself: third time around so my body has jumped to the end game a bit before we're ready.


I am feeling really well and the baby is doing great as far as we can tell. She is incredibly active, especially in the evening but also she has the hiccups quite often during the day and every now and then I can feel her do a full flip.  My only complaints are some pretty serious sciatica (I don't want to write much about it, but damn it hurts!) and indigestion if I eat anything even slightly fried.  So there you go.  I've gained about 20 lbs so far, so I am sure this pregnancy will rival or surpass the 35 lbs I gained with Noah (I think with Grace it was more in the 25-30 lb range...but who knows or cares, really).  

I am not quite ready to start counting down to my departure - still feels like there is a lot to do here on the homefront (nesting, nesting, nesting)...but I know that the middle of March will be here soon if the speed in which we flew through January is any indication.

Lately Grace and Noah have been super curious about their baby-hoods so we've been watching pictures and videos, looking through albums and baby books.  And every time I see their teeny tiny selves on film or in their baby books, my heart soars a little bit higher that we get to have one more round.  I know we'll be exhausted and all of that, but I am still more and more excited every single day to meet our baby girl (and yes, it will also be pretty sweet to get rid of the sciatica when she is here too!).

LMW

Saturday, January 25, 2014

January 25, 2014 - Noah's 3rd Birthday Party!

For Noah's first two birthdays we were visiting my family in America, so he had small family birthdays.  They were wonderful and lovely, and totally appropriate for a 1- and 2-year-old.  But our 3-year-old was definitely ready to expand his birthday partying style, and so this year he had a party with his four friends from school and his big sister.  

The first and only glitch was that the drumming teacher, who was going to come to do drumming with the kids for 30 minutes, cancelled 2 days ago and I was not able to find a replacement (and Noah did ask for him twice today!).  So we sort of had a little more "free time" than anticipated.  But otherwise it was really fun: bouncy castle, bajaji rides, treasure hunt, great cake!  All of this made for a happy birthday boy.  
Fun Presents!



Bouncy Castle with Friends!

Bajaji Rides!
So the story behind this is that Noah would love to ride in a bajaji all the time, but we never let our kids do it because it is so unsafe (and we have a good friend who was in a bad accident).  So for 30 minutes we hired a bajaji to drive around our compound with the kids...and as you can see below Noah loved it, which was totally the point!

 (check out this smile!)
 Kristoffer and 6 kids in the Bajaji at the same time!


 My first ever "selfie" with Noah and his friend Anker :)


 Treasure Hunt!
Kristoffer had the kids going all over the compound and the house finding shovels and buckets (and some candy) along the way until they came to the spot where the treasure (their goodie bags) was buried.  The hard part was that Noah's treasure was buried the deepest and was found last - but he was a great sport.  And the goodie bags - which were sand buckets filled with a few beach items - were a big hit (although the kids thought they were missing the actual "goodies" - candy!  My bad!).







Grasshopper Cake!
Noah really wanted a grasshopper cake for some reason. And I found a great expat baker who was able to make this from an internet picture.  It not only looked insanely cute, but tasted REALLY good.  Moist and delicious chocolate cake - everyone loved it! And after dinner tonight we polished it off :)


So happy for our happy 3-year-old boy!
(and now we have a month to gear up for Grace's birthday! Then I can fly over to Boston for the final countdown to the BBG's arrival.  Yikes!)
LMW

Friday, January 24, 2014

January 24, 2014 - Major Milestone

I hope this isn't tooooo embarrassing to Grace (or perhaps with five years of being blogged about we're beyond embarrassment and just fueling her future-pyschologist's hours...), but in our house this week we are super excited that she has started sleeping through the night DRY.

Obviously she has been potty trained for a long time - like more than 2 years - but night time has never been easy.  As much as mentally and emotionally she's been ready to sleep in big girl underwear since before she was 4, physically it has not been possible.  Even over the Christmas holidays when we tried it she had several nights of accidents and we went back to Pull Ups.  Even recently she was wetting through Pull Ups and changing them in the night herself.  

But to all the Mamas out there who told me not to worry or stress and promised me that she would not go to high school sleeping in Pull Ups - Thank You!  You were right!  I don't know exactly what has clicked in the last few weeks but something has changed.

Now we continue to not let her drink too much after 5 pm (she used to be sort of an addict-drinker), she goes potty 2 or 3 times before bed, and one of us wakes her up to pee once before we go to bed (a strategy that previously only worked if I set an alarm and woke her up every 3 hours...which was horrible for both of us!).  She has been dry in her Pull Ups for a few weeks, and three nights ago she said she was ready to try underwear again.  With complete success!  

Her pride and confidence has sky-rocketed, and so has mine!  I feel like this is a particularly good reminder that all kids are different, and there is no "right" or "wrong" time necessarily for these things to happen.  I am especially happy for her that it happened before she turned 5 (since we know kids who have been dry at night since they were even 2 or 3!) because that was something she was really hoping for!  

And here is our happy almost-5 year old big girl today being cute and silly with her 3 year old brother before school today.  We've definitely had some happy mornings this week!


LMW