Home sweet home!

We arrived home after a long day at UofM. Audra is such a super star! She did so well. She had no issues and is a "perfect candidate" for the Fontan (her third surgery). She required no intervention and had little issues. 

It did take us a while to get back and see her because she had issues with the blood thinner. But better late than never. We have learned to be patient. It was hard when the receptionist was on a

personal call hereby the person on the other side was directed that "you tell your baby momma that you ain't got not no money to pay for a rental car." It was better than tv. 

Back to the issues. Audra had a fair amount of sedation and so she was very sleepy, even when we left. By the time we got home, she had slept it off and was in a much better mood. We had a nice evening out in the neighborhood and Audra is sleeping well. Her sister, on the other hand, still needs another story to fall asleep. 

Thank you to everyone for your thoughts and prayers! We should be set for a while - at least until the fall. We really hope not to be back at the hospital until late October. 

All the best!

Cath - Good News

They are done with the cath and all went well! No intervention was needed. We should be able to leave this afternoon! We are waiting to talk to the doctor to find out all of the details but we wanted to pass along the good news while we have a chance. 

We will have to be in recovery for 4 hours. Recovery is never fun but it is a good feeling to hopefully be headed home today!

Pre-op day

The pre-op day today went well. Audra is a true sleep fighter. But we have known that :) She did really well until our meeting with the doctor doing her cath at the end of the day. She was cranky, hungry and over being at the hospital. Fortunately, a yummy snack did the trick but we could tell that our doctor prefers the cath lab to crying kids. 

At the echo, they were able to see flow on her left pulmonary artery. This is a good thing! It increases the chances that the doctor tomorrow will not have to do an intervention. We will not know for sure until they are doing the cath tomorrow morning so please continue to keep Audra in your prayers and thoughts!

We have an early morning tomorrow as Audra's cath is first case - meaning she goes first. The doctor expects that her cath will last 3 hours, which is on the shorter side of the estimate. We are not banking on this but it is good to hear. Our bags are packed in case we have to stay overnight and it is an early bedtime for our entire household. The hospital is tiring!

Thank you for your continued love and support! We will update as soon as we have a chance tomorrow. 

All the best!

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!!!