Congenital Heart Defect Awareness - Day 1

This year, Congenital Heart Defect Awareness (CHD) week has a much different meaning that it two years ago and even one year ago.  Two years ago, we did not even really know what a congenital heart defect really was.  Last year, we looked to find hope as we anxiously awaited the arrival of our little girl with her own CHD.  This year, we only need to look to our little Audra to see how strong someone so little can be and how much hope we can have.

Today Audra decided to celebrate CHD Awareness Week by officially crawling!  She has been on the move by rolling all over the place and creeping forward.  But today, she seriously started crawling.  As she gets faster and more mobile, her older sister is getting more and more concerned because she is having to share more and more with Audra.  We are still working on sharing.  We take things one day at a time and celebrate each moment.

Of course, we do not know what the future holds, but we feel very blessed given all that our little one has been through and how well she is doing.

All the best!

Congenital Heart Defect Awareness

With February being Heart Health Month and February 14 being Valentine's Day, it is only fitting that February 7-14 is Congenital Heart Defect Awareness week.  In many states, there have been proclamations to raise awareness for this week.  Michigan is one of these states!  This is copy of the actual signed proclamation from Governor Snyder.

Please help support Congenital Heart Defect Awareness!

More to come!

10 Months Old

It is hard to believe that Audra is already 10 months old (and two days)!  I am sorry that there have not been any updates in a month.  No news is really good news!  We are busy living and enjoying life.

Both my husband and I had the time off between Christmas Eve and New Year’s Day.  It was so nice to be able to relax and spend quality time with our family.  We had a very Merry Christmas indeed.  We had family over and the girls had a blast with their cousins!  Our older daughter had such a great time on Christmas Eve that she slept in on Christmas morning until 9:45.  Audra was up early to celebrate her first Christmas and was going down for her nap at that same time.  Luckily, our family was not scheduled to come over until the afternoon.

With the snow that fell during our break, the entire family was able to get outside and ride on the sled from Oma and Opa.  Both of our girls love the outdoors, which I credit to my husband and also our nanny who both take the girls out frequently. 

On New Year’s Eve, we reflected on the year 2012 was for us.  As you know if you have been reading this blog, 2012 was one of the best and worst years for us.  It was a rough road but we could not be happier or feel more blessed than we do today.

As we noted in our last post, we had hoped that 2013 would be a year without surgery for our family but my sister already required ankle surgery this year.  She broke it in a fall just before the new year and had to have surgery on January 2nd.  We are happy that the surgery went well and she is recovering, slowly but surely.

Audra continues to do well.  She is still growing like a weed and is sleeping well too (although my husband might say otherwise).  She can sit up on her own when she is laying down now but she still prefers rolling to crawling.  She definitely likes to do things her own way!

Don’t forget that February 7-14 is Congenital Heart Defect Awareness Week.  Stay tuned for that!

9 Months Old

It is hard to believe that Audra is already 9 months old. Time is really flying and it has been so long since we have updated. Sorry!

All is well as we get ready for Christmas. We did sleep training during the long Thanksgiving weekend after getting the thumbs up from our cardiologist. Audra took to it like a champ. The first night she only woke up two times and after three nights, she was sleeping through the night. Since then, we have all been getting more sleep. It has been great.

Audra had her 9 month check-up and is doing well. She is gaining weight well and up for feeding herself more and more.

She prefers rolling to crawling and can really get around.

We have so much to be thankful for and we are really looking forward to celebrating Christmas! We hope you have a Merry Christmas and a great 2013! We are hoping for an uneventful and surgery free 2013 :)

All the best!

Cardiology Update

Today we met with the cardiologist to have a check-up. The good news is that everything is status quo. Her heart function looks good. None of her valves are leaking. No collaterals. No coarctation. Everything looks perfect - well perfect for her, which I'd great. Her sat levels are some of the highest she has had. The cardiologist was VERY pleased to see how well Audra has gained weight. It really couldn't have gone better.

We discussed many things with our cardiologist. One thing is the timing of Audra's next surgery. At UofM, the third surgeries are typically done when the baby (toddler I guess) is 18-24 months old. We discussed that many centers are delaying this but UofM really isn't for various reasons. Since there are such rapid improvements in the surgeries, it is not settled if the delays are actually causing any long term benefits. Anyway, we decided that we can "plan" for Audra's Fontan in spring of 2014 when she is just over two and RSV and flu seasons are over. I say "plan" because as we know from the Hemi, Audra may decide otherwise and things may not go as we plan them.

We also discussed Audra's sleep habits and how we can improve them. We got the clear to try some sleep training with her. We are very excited to work on getting more sleep for all of us!!!!

All and all a good appointment. We don't go back to the cardiologist for another three months! Our next doctor appointment is for Audra's 9 month check-up. It is such a change from the days of constant appointments and home visits.

We are in such a good place this thanksgiving and have so much to be thankful for!

8 Months Old

Today Audra is 8 months old!! How quickly the time passes. She continues to amaze us!

Today we are thankful that Papa arrived safely home from his business trip. He is really our rock and we missed him dearly!

Today also marks 12 weeks without a feeding tube! There isn't a day of those 12 weeks that has gone by where I was not thankful that we persisted to get rid of the tube. It is hard to think of how different our lives would be but we are beyond thankful that Audra has really taken off with eating on her own.

Tomorrow is Audra's cardiology appointment. So thoughts and prayers are appreciated for that. We will update on the appointment when we have a chance.

One Year Ago

One year ago, almost to the moment, we were sitting in our level two ultrasound anxiously waiting for the tech to get through with the scan so we could go merrily on our way to our parenting group.  As you know, this did not happen.

It is very hard to write the post because we have been through so much this year but we feel very blessed and thankful to be in the position that we are.  It is a weird dichotomy.  Of course, we wish that our daughter’s heart was not underdeveloped on one side.  But given all that could and did happen in the past year, we are in a good place. 

Right now, we wish we could travel back to the bad news room we were sent to after receiving Audra’s diagnosis and tell our past selves that everything is going to be okay.  Then again, right now I wish that our future selves would do the same.  Of course, this is not going to happen.  All we can do is keep on keeping on, as the saying goes.  We do not know what is around the next corner and we never did.  That is the ironic part.  You never know what the future has in store for you.  We were just in a place of ignorant bliss that allowed us to ignore this fact.  Now, we cannot ignore it.  But despite this fact, we are in a good place.

Audra is thriving!  She has continued to gain weight and develop on track.  She is eating solids three times a day and loves everything we put in front of her.  She loves when her older sister makes her laugh (and her older sister loves making her laugh).  She is getting up on her arms and her legs to start crawling, although not at the same time.  She can sit on her own but not when she gets too excited – she will still topple over.  All is well, although I would be remiss if I did not mention her hate of sleep.  It is such a change from our older daughter who loves sleep.  Audra, on the other hand, is a huge sleep fighter and would probably stay up all night if we would let her.  So if any parent who was once sleep deprived and found a trick to help your baby sleep, PLEASE let us know.  We will take all the advice you guys have :) 

We have a cardiologist appointment next week on the Wednesday before Thanksgiving.  The Wednesday before Thanksgiving of 2011 was the first date we met Audra’s cardiologist before we went over to UofM.  We are hoping that this year’s meeting does not uncover any unexpected complications and that things continue on the status quo.  We do, however, plan on discussing Audra’s third surgery – the Fontan.  There are some different theories out there for the Fontan and we plan on getting more information about them.  There are two different types of Fontan surgeries offered and different centers have different timings for both types of the Fontans.  We want to make sure we have the most information possible so that we are making the best decisions possible.  It is hard because hindsight is 20/20 and we don’t have the luxury of hindsight right now.  Again, where are our future selves to help us out?!?

Anyway, if you are reading this, we want to thank you for your support!  We couldn’t have made it through the past year without all of you.  From reading these posts and knowing what was going on, to the phone calls, to the emails, to the cards, to the texts, to the thoughts and prayers, to the meals, to the gifts – we appreciate it all… more than you know.

All the best!