Little Heroes

Congenital Heart Awareness Week comes with some mixed emotions.  My life changed forever when CHD entered it.  How can you not look at this and feel pride and hope? 

(a poster and write up about Sofia and other CHD kiddos were on display at the Clinic this week.     so awesome )

As a mom, I also can admit that I feel little sad and a little fearful at this time of year.  Sad for parents who have lost their babies, and sad knowing I am all too close to it and I could put myself in that place, yet at the same time couldn't even imagine the grief.  I think you cannot be a mom of a child with CHD and not feel at least a little bit of those emotions too.  We don't know what the future brings and for planners like me, that can be scary.  I have decided though that I am mostly happy during CHD week this year.  In my mind, Sofia is a CHD success story.  She is one of the lucky ones and we do not take that lightly.  Sofia may have been born with a broken heart, but she is not broken.  It hasn't broken us.  She is happy, energetic, and so full of life.  I once read that as a parent, you are only as happy as your sickest child.  So I won't hesitate to happy and enjoy my girls!

Four years ago, I was just learning what congenital heart defects were, having a new 6 week old baby who had just had surgery 3 days before Christmas and had only been home for a few weeks.  It was a surreal whirlwind, and that I am glad time has erased some of the details.  We have come a long way in four years, and now are active in meeting and supporting other families with children with heart defects.  At the time, I didn't think I would ever to get this point in my life.  There is much to be celebrated in that.

CHD awareness to me is about sharing the stories of remarkable children (and adults!) who are literally modern miracles, and hoping that with increased awareness, that legislation will be passed (especially in Ohio where it's lacking) for newborn pulse oximetry screening.  This would help diagnosis many children, including those with Sofia's type of defect, early. 


In honor of CHD week and Valentine's Day tomorrow, here is my special sweetheart on her very first Valentine's Day. 

                                                         (Sofia - February 14, 2009)

And here are just a few more because I can't resist cute pictures

first tea party at friend's birthday party

 

love, love this one

 

 

                                             sweet Adelaide wearing red for Sofia this week

Christmas 2012

Ahhhh, Christmas.  I do love this time of year.  The lights, the colors, the tree, the cheer, the giving, the excitement.  Even wrapping presents.  I feel as if a Christmas hangover is going to be imminent.  We still have Christmas with Oliver's parents starting tomorrow as they are driving down from Toronto to spend a few nights with us, so the hangover will be delayed.  It is hard not getting caught up in the build-up to Christmas, and then suffer the withdrawal symptoms afterward.  There is always New Years to perk us back up!

We had a really nice Christmas.  We spent Christmas Eve with my family, at my parents house with all of my siblings, nieces, and some extended family too.  Christmastime at their house, our childhood home, has always been the norm for us, with family always coming to us.  It has been harder the last few years, as we all have families of our own now and for the last few years haven't all been together for Christmas Eve and Christmas Day.  But this year we did and it was nice.  My parents do so much to host these events and I just can't imagine Christmas any other way!  I love some traditions we have and we definitely owe it my parents for keeping up with them.  The 4 granddaughters were together and they were crazy together, but it was fun.  I hope they will have wonderful memories of these holidays.  I know I do!

The girls loved opening presents (of course) and playing with new toys.  I think they will keep busy with them for a long while.  I would love to purge some old toys.  It is amazing just how much stuff accumulates after just 4 years of having children. 

My brother Chris and I took on a project this year for Sofia and Camryn's presents.  He grudgingly went along with my plans and the result was perfection!  He admitted it later too.  We bought kind of a bare bones dollhouse bookshelf and decked it out with all the upgrades - carpet, flooring, a loft, furntiure.  I know the girls will play with this for years and I love that it has our personal touch on it.  Adelaide was so cute walking around the little puppy that my sister Kate got her.  She loves walking Kate's bulldog, Dexter, and now she has her own little puppy that walks on leash.  When I was tucking her into bed tonight, her last request was for her puppy.  So sweet.

We will never forget 2008 when Sofia was born exactly one week before Christmas.  I was due 12/20 and I was kind of relieved to be induced on 12/18,  so that we could spend our first Christmas at home as a family.  And as I learned, there are things you can't plan for, or you can try to plan all you want, but some things can't be predicted.  Sofia had surgery on 12/22 and was in the hospital well into the new year.  It was a hard holiday season, but somehow we made it through.  I think we have come to love this time of year even more and appreciate the good years we've had since then.

We are very lucky everyone was in good health this year and we truly had a holiday season to remember! 

Oliver and Sofia on Christmas Eve

4 Granddaughters

Sofia with her ornament she made in preschool

Adelaide and me on Christmas Eve

Dollhouse Before

 

Dollhouse After

Decorated for Christmas

 

London

I've been thinking about updating for awhile, but knowing it would be a bit of a lengthy post, I wanted to find time to sit down and write.  First things first, we had an amazing time in London!  We had basically a 10 day vacation visiting Oliver's brother in London and in Wales for his wedding.  The girls were good on the flight over and we had Oliver's parents to help us on the flight. When we arrived in London we went into the city and they spent the week in Bath.  We did lots of sighseeing in London and the girls enjoyed being strolled around the city and shown the sights.  It was on the cold side, but not very rainy, so we managed.  We had a great apartment that we rented, which was in a good location and had 2 bedrooms, and a kitchen.  The wedding was beautiful and it was an all around great trip.  It was nice to be able to enjoy a real family vacation.

Germ season is clearly upon us as both of my girls have had stomach bugs in the past 2 months, but luckily Oliver and I have escaped it.  Sofia's was particularly persistent over 14 hrs. and involved a trip to the ER as she wasn't keeping anything down .  The next day she bounced right back and was fine.  She is doing well heart-wise.  She has done well since her heart cath and is doing well on coumadin.  We have now gotten her at a good dosage and we were able to get a home testing device and monitor her levels at home.  She now only has to be tested once per month at home, so the frequent trips to the lab are going to come to an end, which is nice.  She had a cardiology check up this week and Dr. Edwards said how good she looks, which is what we like to hear.  Her echo was good and it was uneventful, which is great. 

She is being followed by a gastroenterologist ever since it was discovered she had gallstones back in June.  One of the reasons we took her to the ER when she had the stomach bug was to rule out that her gallstones weren't what was causing her to be sick.  And over the past few months, when her liver is palpated, it seemed to be larger than normal, but her blood work had been normal.  She then had one result that showed a slightly elevated AST and ALT.  The gastroenterologist recommended that we recheck, do an ultrasound and then meet again in January.  Thankfully, her bloodwork and ultrasound were both normal in October and November, so I'm hoping for a good appointment in January with her.  I'm hoping her liver had just taken its time to recovery from her heart surgery in May and that these issues are behind us at this point.  I also know that Fontan patients can develop liver problems due to their elevated venous pressues, so I would expect she is always monitored for these issues.  I also hope that they know more about these problems and have a course of treatment by the time Sofia reaches an age where this could be a real problem for her and patients with similar anatomy.

There is big cause for celebration tomorrow because it is Sofia's 4th birthday!  I truly cannot believe she is going to be 4.  When she was born I couldn't imagine what things were going to be like when Sofia was a toddler and preschooler and into the future, and I am so very proud of this sweet, beautiful girl.  I can't wait to see her excitment on her big day and celebrate Christmas with her, Oliver, and Adelaide this year. 

Adelaide celebrated her 2nd birthday in London.  She is becoming such a big girl and has a vocabulary to rival her sister's at that age.  She is sweet and sassy and still a mommy's girl.  She loves her big sister and it can be very cute to watch them together.

I am so thankful to have these beautiful girls and my heart just breaks for the parents who had their children taken from them this week in Connecticut.  I just cannot imagine life without my girls, and I pray for these families because their lives will never be the same.  So, so sad.

The four of us at Thomas and Selena's wedding

                                                           Adelaide on her 2nd birthday

                                                                 

Coumadin

Sofia is doing great and she's back to feeling like herself after her cath. She has been on coumadin for 11 days now and INR has been tested twice.  After the first time, she wasn't at a therapeutic level yet, and she was just checked yesterday for the second time and the results weren't back yet.  She went back to gymnastics yesterday, which she is allowed to continue.  She follows up with Dr. Golden, who did her cath, on Tuesday and she also has an appointment with the gastroenterologist.  I think forgot to mention in August that she went to see her for the first time because it was discovered back in June when she was in the hospital that she has gallstones.  Dr. Hupertz, the gastroenterologist, will follow her.  She's not having symptoms so we will just hope that she continues to not be bothered by them.  However, if they do cause a problem they will take out her gallbladder.  Hoping it doesn't come to that!  Her liver was also enlarged, so they are going to keep an eye on it.  Dr. Hupertz's opinion is that if there was some liver congestion after the surgery it could take a few months for it to return to normal.  She will have an ultrasound on Tuesday.

Only 3 more weeks until our trip.  Have a lot to do before then!  

Heart Cath and Heart Walk

While it's still fresh, I wanted to write about Sofia's heart cath.  She went in on Oct. 1st for what was her 4th heart cath.  As I've written before, the primary reason she was having this cath is because her left pulmonary artery (PA) has looked narrow in one area.  The secondary reason is if there were any collateral vessels, they would be coiled.  Her left pulmonary arterty has been worked on before in her Glenn surgery at 6 months old.  In her pre-Fontan cath in April, Dr. Golden pointed out a narrow section on 3D imaging, but it was thought to be in a good position that would be right where her Gortex conduit was going in and that would hopefully take care of it.  However, in the last few echos in August and September it looked narrow again.  Dr. Edwards said she would need a cath to put a stent in it to keep it open, and that we could have it sometime in the winter.  We opted to have it done before November, which is when we are going on vacation.

Dr. Hill and Dr. Golden told us on the morning of the cath that it was possible that they could get in there and decide that the PA looked fine and they wouldn't need to do anything.  Dr. Golden also said that if he saw collateral vessels he would coil them, but he would not go looking for them.  The reason is that there is not definitive research that coiling them is the best thing go do, and there could be a benefit to the body creating this natural "top off."  Therefore, if big ones weren't evident, he would leave them alone.

Sofia did well in the morning.  Her cath was pushed back and we didn't even have to be there until 9.  She mentioned being hungry a couple times, and we promised something to eat when she woke up.  She requested French toast.  We were able to be with her and take her to the cath lab.  She was given versed first, which made her very relaxed.  She was under at 11 AM.  It was a really long wait.  She was extubated at 4:55, so the entire cath took 5 hours.  We did get a few updates during the cath, and had learned that she would need the stent.

Dr. Golden came out to talk to us right afterward and gave us the details.  Her Fontan pressures were on the higher side at the beginning of the cath, which suggested something was going on.  At the end of the cath when the stent was placed the pressures decreased (we were told that pressures tend to be higher at the end due to being under anesthesia that long and the use of the dye), so it was good that her pressures came down.  It was obvious the stent was needed and the timing was probably good.  There were no collateral vessels that were coiled.  Dr. Golden described himself as a perfectionist, and there was one thing that didn't please him.  Apparently, the stent can moved when it is being placed.  But once it is place, it cannot move.  The only way to remove is through surgery.  Hers did move when it was placed and it sticks out slightly.  We saw it on video.  Really wish I could draw a picture here to show it.  Essentially, it is not completely off blocking anything, and it is mesh so blood can travel through it, but because of it sticking out he told us she would probably need to be on Coumadin.  This wasn't expected, as Dr. Edwards favors aspirin, and we thought we'd have a lot more time before she'd need to be on coumadin.  However, we understood the need to for coumadin due to the stent placement, just not thrilled about it. 

About half of cardiologists prefer that Fontan patients are on coumadin, so if we had a different cardiologist she might have already been on it.  So she is going to have weekly blood draws until a therapeutic level is set and then hopefully about once per month to monitor.  I did find out that my insurance company will cover an at home testing kit.  I had a long talk with Dr. Edwards on Thursday and felt better about it after talking to him.  He has a reassuring effect and are thankful that after things happen that we can call him and have a good explanation of things.  She can continue to do gymnastics.  We are still going to go to London.  I just worry about how active she is and the risk of injury due to falls.  We will need to make sure the preschool and our babysitter know that it is important for her to avoid physical contact and notify us of any injuries.

I'm glad that Sofia is recovering well from the cath.  When she woke up after surgery, she was so hungry and it definitely made me smile that the first thing she said was request for breakfast.  She proceeded to eat a ton of spaghetti and meatballs.  She stayed one night at the Clinic and Oliver spent the night with her.  Thankfully, they had a private room.  It was really hard for me to work the next day and it would have been nice to have one day more off.

We had a nice weekend, and we had the big Congential Heart Walk on Saturday.  We really enjoyed it last year and were glad to be doing it again.  There were double the walkers this year and the last number I heard was that it raised $70,000, which is great.  Mended Little Hearts also had a table set up and we raised some money selling some merchandise.  It was a cold, rainy Friday, but it stopped raining for walk day, and then resumed today.  The walk reminds me of how lucky we are that           1) Sofia has continued good health, and it is not lost on us that there are lots of families that have more struggles than we do, and 2) that the CHD community is a very caring and close one.  Because when things happen that have you down, there are always people to talk with.  There were lots of families there that I have come to know over the past year or so, and it is nice that everyone comes together for this annual event.  This has been a big heart year for Sofia having 2 heart caths and her Fonan surgery, so we have become more involved.  It was also nice to see a good turn out from the health practitioners too - we recognized lots of nurses and doctors there.  The support of our family and friends is so touching and it means a lot that we had a lot of support and a lot of walkers for Team Sofia at the walk!  Great weekend!

Just one of the Hazel siblings missing... Next year the Hazel 5 will walk together again!

My Favorite Season

We have been sailing through a few busy weeks.  We decided at the last minute to take a trip to Toronto over Labor Day weekend to see Oliver's parents.  I was surprised when I realized we hadn't been up since last Christmas.  We usually make a few trips during the year, but this Spring with Sofia's surgery we hadn't been able to.  We are lucky they were able to come down several times to see us though.  The girls love seeing their Oma and Opa.  We were even able to take advantage of my in-laws' babysitting skills and have night out to ourselves (it is hard to remember what that is like!)  The great thing about their location in Toronto is being able to walk to see a movie and get some yummy gelato on the way home, and have fresh chocolate filled croissants in the mornings.  It is nice to be reminded of what city life is like...don't get much of that around here :)  Thankfully, Toronto is a short 5 hours by car and that seems to satisfy the craving.

It has been a rainy morning here, and it definitely feels like fall - my favorite season.  This fall is going to be particularly eventful for us.  Here's what's going on:

Sofia started preschool last week!  I feel like this is a big milestone in her life so far.  She had no reservations and seemed to love it as much as we did.  I really liked the teacher and feel like it is going to be a good atmosphere and good experience for her.  I'm so excited that she doing "normal" activity for her age and that she is not being held back anything health related.  She loved getting ready the night before school by sprinkling "magic preschool dust" around her bed, which was supposed to ward off preschool jitters.  She liked getting ready and carrying her backpack.  She was all talk about her new friend Chloe when she got home.  Sofia also had her first night of gymnastics class with her friend Irelynn and her favorite was the balance beam.

October 1st is Sofia's cath to put a stent in and possibly coil collateral vessels.  That will be a one night hospital stay.  On October 6th, we are taking to the streets for the 2nd Annual Congenital Heart Walk.  Very excited to support this cause again and have some fun.  It sounds like there are going to be lots of fun things for the kids to do and I know we have a great time supporting our little love, Sofia and supporting the Adult Congenital Heart Association and Children's Heart Fund.

In November, Adelaide turns 2!  Actually she will turn two while we are on vacation in London!!!  We have booked our trip to the UK for Thomas's wedding.  The girls will love to see Uncle Thomas and their new aunt, Selena.  Their wedding is in Wales and the from the website, it will be a stunning location.  It is hard for me to believe that Adelaide will be 2 soon.  She keeps up with her sister and it's hard to keep track of all the things she's doing and learning because it happens so fast.  She is my fiery redhead still and I love this still-cuddly, still mama's little girl.

When we return from our trip, my parents will celebrate their 40th wedding anniversary, and it appears they are going to let us plan a dinner.  Not a party, but a dinner.  I know they don't want to do it up big, but 40 years is worthy of celebration!  During the week of Thanksgiving, both my grandpa Locke and my dad also have birthdays, and my grandpa's is a big 95th!  Very awesome.

There are some exciting thing to look forward to and I feel like it is going to be a great fall! 

                                               Sofia and her friend Irelynn at gymnastics

                               Sofia with her cousin Camryn on her first day of preschool

                                                                First day of preschool

                                                                      In Toronto

                                                          sweet 22 month old Adelaide

                                                         on the Subway in Toronto

                                         hanging out eating cake in Oma and Opa's garden

Update

Finally finding a minute to sit down a type out an entry. It's been a busy month! Here are the highlights:

1- Oliver and I celebrated our 9th wedding anniversary at the beginning of the month. Hard to believe it's been 9 years!

2- Oliver's birthday was last weekend and he took Sofia camping at Wheatley Provincial Park, where he met his parents. From what I hear they had a great time. Adelaide and I went to BGSU instead for a family reunion with my dad's cousins and their families. We had a nice little road trip with Kate, Emily, and Amelia too. It's fun being on a college campus and it was nice to see all the family and visit. It was especially interesting looking at all of the pictures the cousins brought of my great grandparents and their families. I have to post some of these.

3- We are headed to Toronto for Labor Day weekend. It's been since before Easter that we've been there. I'm looking forward to being in the city and hopefully getting a date night while we're there.

4- We are in the midst of planning a big trip to London in November! Oliver's brother is getting married and it looks like all 4 of us are going to go for a week and a half.

5- Sofia is doing very well. Her energy is great. Her coloring is really good. Her pulse ox is at about 91. She will be having a heart cath on October 1st. She has a little narrowing near one of her pulmonary arteries (the exact location is confusing to me b/c apparently it is not one of her arteries but near the opening of it, but behind the heart? I think I need to see a picture of this). So she will require a stent. Dr. Edwards was ok with waiting until winter, possibly around Christmas time, but with planning a trip overseas we have decided to do it a month prior. At the same time, if needed, they will coil any collateral vessels (which is probably the cause of her pulse ox hanging out in the low 90s instead of mid 90s). Dr. Golden will perform the cath. He did her pre-surgery cath and we are comfortable with him.

6- Sofia starts preschool on the Tues. following Labor Day. So excited for her! We are also registering her for gymnastics class. I think she is going to love these things and has been cleared by Dr. Edwards to do any kind of physical activity. She will self-regulate.

7- Adelaide is talking up a storm and in my biased opinion, is such a bright child. She is very entertaining. She loves her big sister so much. She is almost at the age that Sofia was when Adelaide was born. That is crazy to me because Adelaide still seems like such a baby. They are only 22 1/2 months apart.

8- I guess that's it. I don't know why I'm numbering these things. I love that fall is on the way...my favorite season of the year!