Update

It has been a while since we posted an update. We have been busy living life, getting ready for vacation and getting ready for Audra's catheterization this week. Yes, you read that right Audra has her cath this week - on Tuesday and her pre-op day at UofM is tomorrow. 

At her last cardio appointment, we decided that since we will be doing some traveling before her Fontan (her third surgery in the fall), we would have her cath before we go on vacation. During Audra's echo, our cardiologist was not able to see the flow in Audra's left pulmonary artery. It doesn't mean that the flow is decreased and Audra has no symptoms that would indicate that the flow is decreased, but we decided - better safe than sorry - and we had to have the cath now. 

So here we are. Just two days out from Audra's second cath. This will be the second time Audra has spent the days of July 1 and 2 in the hospital. And we are hoping and praying that she does not have to spend the night of July 2 in the hospital. 

When the doctor is doing the cath is when we will find out if any intervention is needed on Audra's pulmonary artery. She may need a shunt or a ballooning of it. If she has either of those, we will stay overnight. The recovery is typically very fast from either one and we should be discharged on Wednesday morning. 

What I just found out is that if she has to get a shunt, Audra will be on a blood thinner that requires regular blood draws to monitor levels. If you remember just less than a year ago, we had some pretty horrible experiences with getting Audra's blood drawn. And the time frame for that is six months to indefinitely. Indefinitely?!? That is hard to think about so right now we are hoping and praying that Audra does not need a shunt. Please send your prayers and thoughts Audra's way especially between now and Tuesday!

The pre-op day consists of a chest x-ray, an echo and an EKG. Hopefully it is a pretty easy day. 

The cath is expected to last 2.5-4 hours. It will be on the longer side if she needs a balloon or shunt and on the shorter side if not. We will not get our first update until about an hour into the cath. At that point, they should know whether they have to do any intervention. Should being the key word, of course. We will keep you updated. 

On a lighter note, we are again fighting with our insurance company. This time it is over oxygen for a flight we are taking in July. Audra qualifies for fully-paid in home oxygen, which includes a travel unit. We do not use it so we do not have either one. We cannot get only the travel oxygen since she doesn't have the home oxygen. But we can get her the full home oxygen to also get the travel oxygen, which will all be fully covered. Make sense? Yeah, I don't think so either. But it is what it is. 

We will be updating soon! Thoughts and prayers appreciated! 

All the best!

14 Months!

Yes! Audra is already 14 months old! A lot has happened since my last post and I am sorry it has been so long. We have been living life to the fullest and haven't been taking time to document it here. 

Today we had a cardio appointment so this causes us to stop and reflect (and document). The good news is that Audra's heart function looks "perfect". It is pretty much unbelievable to say "perfect" given all her little heart has been through. But for a HLHS patient, her heart function looks both "perfect" and "fabulous". These are both words our cardiologist used today. She does not use these words lightly. This makes us happy!

Today we discussed Audra's Fontan. We

are looking at having it this fall. This came

as a HUGE surprise as we had previously discussed next spring. So our cardiologist will talk to our surgeon this week to see what he thinks about the timing. A key here is to avoid RSV season. If you read the blog, you know about RSV. If you forgot, it is a respiratory infection that most kids get but causes huge problems for HLHS kids, especially those that are pre-Fontan. 

So we want to have surgery outside of RSV season, which is much earlier than we were expecting. It shouldn't cause any issues but is just not what we were planning for. You never know what is around the next corner - even is you try to plan for it. 

This is a lesson we have constantly learned over the past few years. 

Once we find out the timing of the third surgery, we will let you know. 

All the best!

Home Sweet Home

Home Sweet Home one year later. One year ago today, we left the hospital for the first time with Audra. It was one of the happiest days of our lives (but also very annoying).

We got everything wrapped up and were ready to go but our nurse left for lunch and did not submit our discharge papers. When you just want to go home to have your family together, any delay is such a delay. Ugh.

We had to stay to feed Audra one more time before we left and then Audra messed her pants (as grandma would say) and we had to change her out of her coming home outfit to her back up outfit. Mind you, her outfit last year was a summer outfit because it was so warm.

Anyway, we walked out of the hospital and over to the parking structure and there was this woman smoking one hospital property where it is not allowed. I was mad but just charged past not husband, being the German that he is, made a comment and I thought he was going to get in a fight (which was not happening but in my over emotional state, that is what I thought). I kept pushing Audra in the stroller and everything was fine. When we were driving our hour ride home, Audra slept and I worried. I had not been in a car for over two weeks and felt like my husband was crazily driving. He wasn't but I just felt like he was. Sorry honey! Again, I blame the hormones!

Anyway, one of most vivid memories of that day (or our first 24 hours home) was when Audra woke up around 2 am and started crying. Then our older daughter woke up and started crying. Then I started crying. My husband was a tad bit worried at this point. Fortunately, we have come a long way in one year! Both of our girls are sleeping and gone rally sleep through the night.

Last Sunday, we celebrated Easter with our family and had a great time. But we did talk about the fact that if Easter was March 31 last year, we would have been in the hospital. Well as the dates fell, we have been able to spend both of Audra's two Easters at home. But this year we were all able to enjoy ourselves a lot more.

We are looking forward to renewing Audra's baptismal rites in a few weeks. Since Audra was baptized in the hospital and we have been limiting her exposure to germs, we have not had a celebration of her baptism. We are looking forward to this celebration!

All the best!

One Year Norwood Surgiversary!

Today is Audra's one year Norwood Surgiversary!  Yes, one year ago today at 7:15 AM she was just three days old and had her first open heart surgery.  How far we have come!

This morning a year ago, we spent 5 AM - 7 AM cuddling and taking some early morning photos.  It was such a hard morning for my husband and I - one of the hardest of our lives.  We had to hand our little 3 day old baby over for surgery - signing a document that we acknowledged that death was a risk - and sit by with only our faith, hopes and prayers.

While the time that we spent with Audra that morning flew by, the time waiting in the waiting room went by excruciatingly slow.  We tried to keep ourselves busy but it didn't help much.  We settled into a small room in the back of the waiting room and waited.  I tried to read but couldn't do much of anything.

After hearing a positive update from the nurse practitioner, we were told that Dr. Bove would be up to see us.  Waiting for Dr. Bove seemed like an eternity.  While we didn't want him to rush, we were eager to hear his prognosis and move along with recovery for Audra.  I remember him giving us a favorable prognosis for Audra and it was so reassuring because Dr. Bove has been doing this for a long time.  In fact, Audra's surgery that morning was about his 9,995th open heart surgery - just a few days later he celebrated his 10,000th surgery.

Once we spoke with Dr. Bove we had to wait longer until we could get back to the Bay to see Audra.  When we went to see Audra in the Bay, it was very difficult.  She was just a tiny 8 lbs baby who was hooked up to all these machines that, at the time, were very unfamiliar to us.  I remember how overwhelming it was to see my little baby the first time after surgery.  But we stayed positive and it is easy to look past all of the medical devices.  She was still our beautiful little girl and her heart was on the way to recovering.

When Audra came back from surgery, her chest was not closed because of the swelling of her heart in order to keep pressure down.  The opening was covered with a simple patch and you could see her little heart beating through the patch.  It is so weird to think that this is something that we have seen but it has become part of our normal.  We will take it if it means spending this wonderful time with our little one!

I remember when Audra got the hiccups the first time after surgery when her chest was still open.  I had to call the nurse over to ask her if everything was okay.  It looked so odd because of the patch on her chest and I had absolutely no clue that she just had the hiccups.  It looked like she was having some sort of spasms.  Fortunately, my husband's favorite nurse quickly set me straight.  She was not one to BS around.

It is hard to believe that this was all just a year ago.  On one hand, this year has passed so quickly but on the other hand, so much has happened in this past year that it seems like it has been at least two years packed into the one!  We are so very thankful and blessed to be where we are now.

Today we were able to celebrate Audra's 1st Birthday and Surgiversary with family.  Both of our girls have stuffy noses (and hopefully nothing more) so they were pretty cranky when they got up from their naps.  But they quickly warmed up and had such a fabulous time.  My sister made a great heart cake and Audra got to smash a heart cake of her own.  We had a great time and would rather spend the day like this than last year without a doubt!

Happy Surgiversary, Audra!  We love you very much!!!

Happy Birthday Audra Jane!

One year ago at 3:22 pm, Audra Jane was born. Seeing as we were a bit busy with our events, I thought we would share some to the details of the day.

When we arrived at the hospital, we were put in a small triage room and it was quickly determined that I was going to be admitted.  So they moved me over to my room and I got settled in.  Most of the morning we slept and sat around.  I had only really moved into active labor in the afternoon and when I was ready to push, they wheeled us over to the OR. That is where c-sections are preformed and it is done when you are having a high risk baby as a precaution. It is also where there is close access to "the nest", which is an intensive care area for newborns that is separate from the OR. It allows for less people to be in the room with you. But there were still quite a few people in the OR with us. One of those persons was a nursing student whom I believe may never want to have children after what she had to witness lol!

Anyway, right after Audra was born and I got to see her, she was taken to the nest. My husband was able to go with her. Once they checked her out, they brought her back to me and I got to hold her. It was obviously very emotional for all of us at that point. We were able to take some pictures and Audra flipped off the camera in her true punk style :)

They then took her back to the nest and I had to go back to my room. I was able to go back to the nest but my husband was a lento stay with Audra the entire time. After I saw her again, Audra and my husband found their way to Audra's room on the 11th floor of the intensive care for cardio patients.

I was able to go up and see her after I used the restroom. It didn't take too long and I hung out up stairs as much as possible. In fact, I think our insurance should not have had to pay full price for my room as I do not think they made one check on me all night. Scratch that. I remember that one of my night nurses, May, came by and did a check of my blood pressure. It was high and she asked me if she should be concerned. My sister and I joked around about it but definitely thought she should be the one telling us if we needed to be concerned. They just watched it, although I am not sure it ever got measured again seeing as I was never in my room.

Anyway, this year we have a much calmer birthday planned for Audra. We are looking forward to celebrating her surg-iversary on Saturday and then having a big celebration in April for the renewal of her baptism :)

Life is good! We are blessed!

Until the next one year ago today post!

All the best!

P.S. Please leave a Happy Birthday comment for Audra so when she goes back to read this when she is older, she will have your comment!  Thank you :)

One Year Ago

And so they start - the posts reflecting back on what was happening one year ago at this time. It is hard to believe that a year has almost passed since Audra was born but we have been given many blessings and feel very fortunate to be where we are.

One year ago today my oldest (and only at the time) daughter had a fever because of a virus. We were nervous that everyone else was going to get sick but luckily we all avoided it. I had had a non-stress test and passed despite failing previous tests. My parents were in town helping out and waiting to take care of our older daughter while my husband and I were at the hospital.

We all went to bed and then at 2:30 am when I got up to use the rest room, my water broke. I walked into the bedroom and woke up my husband. I told him that my water broke and we had to go to the hospital. He responded "now?" It was classic but I did just wake him up from a nice deep sleep. Anyway, it wasn't the first time I had seen Ann Arbor at 3:30 am :)

When we got to the hospital, we thought that I may need some medicine to help things progress along. But fortunately, they were not in any rush and I spent most of the morning relaxing. In fact, the resident on call in the morning let me eat a big breakfast. She must have known that I had until the afternoon and ice chips wouldn't cut it. I also blame her for introducing me to the yogurt parfait at the hospital, which was my breakfast for the entire time we were there and I still eat nearly every morning :)

Anyway, tonight was filled with present wrapping, cake making and decorating so we cannot complain one bit! It has been a very long year that has gone by so quickly. We treasure each moment!

Thank you for your love and support over this past year! It has really meant a lot to us!

Update

Sorry for the delay in an update.  Audra had her appointment with her cardiologist last Friday.  We didn't get to update after that because the stomach flu hit our house that same day and we have been recovering and getting back into things since then.

The cardiology appointment went well.  Audra's heart function looks good and she cooperated for most of the appointment.  We are on track to have her third surgery about a year from now - around her second birthday.  Of course, Audra is in control of this and may tell us if she needs to have this surgery sooner.  But for now, we are planning on March of 2014 for her surgery.  Some centers do the third surgery later, but UofM has not found compelling reasoning to do so.

The stomach flu struck my husband, older daughter and nanny first.  Audra only had a mild case and didn't vomit.  She did loose weight but we kept her from getting dehydrated   She is now back to gaining weight and eating like she is making up for lost time (or perhaps just lost weight).  When everyone else was on the mend, I got it.  But it was short lived.

Audra is cutting another tooth and may be getting two more on the bottom jaw.  She has been handling all these new teeth pretty well, considering she has gotten 4 teeth in 2 weeks with potentially 2 more coming in.  She is really a tough little cookie :)

We are also happy to report that Audra had her last shot against RSV for the season.  It isn't a fun trip into the doctor's for that (although our older daughter always wants to go and get a shot of her own).  Audra will have to get the monthly shots again next winter but we are glad that the season is almost over and we have fared well.

We cannot believe it is already March.  Soon enough we will be starting the "one year ago today" type posts.  Things have changed so much for us in the last year that it will be great to reflect on the differences from a year ago.