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!