Wyatt's Fontan

It has been forever since we have posted. It is really because all is well.  No news is good news. We have been busy living our mostly regular life (a bit on the sheltered side). But we have no complaints. 

The reason I am motivated to dust the cobwebs off of the blog is to ask for your prayers and positive thoughts for Audra's heart buddy, Wyatt. He will have his Fontan in the morning at UofM and we want to give him and his family all the support that they have provided us over the years! 

We pray for Wyatt, his family and his medical team that they are all strong and focused and help Wyatt to a speedy recovery so they can be back home soon! Thank you for your support!

All the best!

93!

Sorry that it has been so long since we have updated. All is well and we have had an uneventful time since leaving the hospital. Audra is doing well and we are back into our routine. 

We had a visit with our cardiologist and Audra's sat level is 93!!!!!!! This is the highest it has ever been without oxygen. This is great. 

Thank you for all of your love and support! We are blessed!

Going Home!

Good news! We got word this morning that we are cleared to go home! More later but we wanted to share the good news!

Post Fontan - Another Quick Update

We are settled in on the general care cardiology floor. It is bittersweet because one of our favorite nurses is back on shift tonight and we would have had her. But intensive care does not frequently remove chest tubes so it is good to be in general care for that. 

Audra has been in a grumpy mood because she isn't allowed to eat for 6 hours before the procedure. Fortunately, she is sleeping now and they will give her a decent dose of pain killer when she is getting her chest tubes out shortly. 

We are hoping that with the tubes out she takes deeper breaths and is able to get rid of the nasal cannula that she has had. Prayers are appreciated!

Thank you! All the best!

Post Fontan - Quick Update

This is just a quick update. Today at rounds they decided that we are going to pull all three chest tubes! We will then see if Audra takes deeper breathes and her oxygen saturation level increases so she can get rid of the last half a liter of oxygen that she has been on for a while. 

They even mentioned the H word - home! We try not to get too excited because you never know what will happen but best case would be we could go home tomorrow! Continued prayers are appreciated as Grandpa has told us how much getting chest tubes out hurts and don't want to have to get them back in again!

We will update again soon!

Post Fontan - Days 2 & 3

Editor's Note: this was written Thursday night and it did not publish. 

We are already 3 days post Fontan and it seems like we are much further down the road. We have been so busy recovering that we haven't had much time to update. But no news is good news. 

Yesterday Audra got her orders to move to the general floor. But like our previous stays here, there is no room for us up on the general care cardiac floor, so we stay in intensive care. The boy in the room next door had orders to go to the general care floor since Monday and just left today, so we are anticipating staying here in the PCTU for a couple more days. 

Audra is doing much better now that all of the heavy sedation and pain killers are out of her system. She is back to her smiling and waving self most if the time. She is still a professional sleep fighter and tries to roll onto her belly, which she cannot do because of her chest tubes. 

Speaking of chest tubes, they have thrown around taking one out but have held off because Audra had not drank much (yesterday). But she has picked up in drinking and eating too and she is more active. Often times this causes an increase in the drainage from chest tubes but so far for Audra, this is not the case. We suspect that she will get a tube or two out tomorrow. It is likely they will keep in one or two for at least a bit longer. But it is looking like we are not going to have a long stay because of chest drainage. Of course, this comes with the disclaimer that things can and sometimes do change in just a moment. But for now we are cautiously optimistic and liking it.  

We have enjoyed visits from friends and family. We think that our older daughter may not want us to come home as she is having fun with grandma and grandpa and gets to go out on adventures with our nanny when she is not visiting us. When she is visiting us, she is having a ball in the Game Day Experience, which is a maize and blue playground here.

Also, thank you to so many who have prayed for us and gotten others to do so as well. We are very thankful and feel very blessed. 

On a lighter note, my husband met Brady Hoke yesterday and today was offered tickets to a UofM hockey game. He is often a lucky guy. 

We will keep you posted. All the best!

Post Fontan - Day 1

Audra is making great progress. It is hard to believe that she had surgery just yesterday. Audra is really ready to get up and going but we have to take things slow. 

We have known that Audra likes to do things her way or throw a tantrum. And this seems to be not too different. She has not been cooperating with having a nasal cannula. Whenever she is awake, she goes straight to her nose to try to rip it off. You can tell it is really bothering her but as the day has gone in, she has tolerated it better. Hopefully, it will come off tomorrow. 

Last night we had one of our favorite nurses which really calmed our nerves. She did a great job responding when Audra was clearly uncomfortable and we feel like she is getting the best care possible when in her hands. All of the nurses, okay most of the nurses, here are really great but it is especially nice to have one that you already have a trusting relationship with caring for your little one in the first night. 

Audra's oxygen saturation levels have been great! Although she still has a low flow of oxygen, she has reached sats of 96 and 98. This isn't much for most of us but for Audra who was at 82-ish pre-op, this is huge. She is going to have so much more energy once she is fully recovered, it will be unbelievable. 

Audra got 3 lines out today with another repeat nurse. One of the lines measured the pressures in her heart. This is one that is nice to have out because Audra is able to move more without fear of puncturing her internally. 

She has been weaned from most of her iv pain killers and is moving toward taking meds orally. This will allow her to get rid of another line so she will only have her iv. She also had been drinking a fair share of juice and milk but got an upset stomach and rejected it back out. So we are letting her stomach settle a bit

more since the anesthesia can cause an upset stomach. 

For a while today we thought that she was in pain because she was crying,

gritting her teeth and trying to roll over. But after adjusting her pain meds, we decided that Audra was just showing her dislike for the current situation (as her dad would say) and letting us know. As we weaned her from the heavy pain medicines, she began to do better. Her night shift nurses tonight even got a wave from her. Audra got to watch part of the Tigers victory tonight and is now sleeping. 

Thank you for all of the love, support and prayers we have received. 

Now we have to pray that The drainage from Audra's chest tubes clear up especially as she is on the move and eating here the next few days. We have heard over and over that the drainage from the tubes is what keeps kids here so we need Rhodes prayers that her drainage clears up and we have no other unforeseen issues. Thank you in advance!

All the best! We will update again soon. 

Fontan Surgery Day - Surgery is Done

Surgery went well and quick. Our first update from the nurse practitioner was the only update - just after 10:00. At that point, Audra was already done with the procedure and getting off the by-pass. 

Dr. Bove then stopped by and told us that everything went according to the plan. There were no issues and they hoped to get her off the ventilator by the time we got back to see her. 

The social worker just stopped by told us that Audra is in her own private room - not the bay. And one of us will be staying at Mott house, which is the in house Ronald McDonald house. We should get to see her soon!

Thank you for all your prayers!! Now the recovery is starting!

We will keep you updated!

Fontan Surgery Day - Waiting Begins

Our early morning went well and Audra was in a good mood. She was giving us smiles when we had to wake her up at 5 am. She does not get this from me. 

The good part about driving to Ann Arbor at 5 am is that Audra took a nap, there was no traffic, and we got a front row parking spot. 

Audra was giving out smiles most of the morning other than when she had to have her oxygen saturation level taken. She has not been a fan of that probe. 

She got some oral sedation before they took her back to make sure she was calm. They said it doesn't taste good but I guess when you are hungry enough, you will eat anything. This helped with her departure to the OR. 

We are getting settled into our spot in the waiting room. So far it is quiet, which is a pleasant surprise. But it is early. 

Thank you, thank you for all of the prayers and thoughts that are being sent our way. Please keep them coming as right now Audra is in the OR and getting prepped for surgery. Since this is her third open heart surgery, it takes a while before the actual surgery can begin as she has a fair amount of scar tissue from the previous surgeries. 

The plan is to have her chest closed at the end of surgery and to get her off of the ventilator within a few hours of getting settled after surgery. For her Hemi, Audra had a difficult time coming off the ventilator, so this concerning to us. But the doctors have told us that her previous trouble is no indication of what is to come after this surgery. So we are praying!

More updates to come. 

Fontan Eve

Here we are on the eve of Audra's Fontan. Fortunately, Audra and her sister are fast asleep. My husband and I, well that is a different story. 

We had Audra's pre-op day on Friday and everything went well. It was a long day but Audra is an ideal candidate for the Fontan, which is so great to hear. 

We have known this day would come but it doesn't make it any easier. But we are looking forward to having this behind us and moving forward. I really have a hard time believing that it is already here, which does not change the fact that it is upon us (and I should be sleeping). 

Thank you to everyone for your love, support, prayers, thoughts, texts, emails, phone calls, surprises for Audra... and everything! We really do appreciate it all. 

We are reporting to the hospital at 6:15 tomorrow and Audra will be first case meaning she is the first to have surgery for the day. Despite the early start for us, this is the best case. She will go back around 7:15 and surgery will take 4-5 hours. We will post updates here as we can. We should get to go back to see her a couple of hours after they finish up her surgery. 

Please keep Audra, Dr. Bove, her surgical team, her PCTU nurses in your thoughts and prayers! We are feeling comforted by the fact that we will have one of our favorite nurses caring for Audra tomorrow night. She took a non-weekend shift just for Audra and she is the best! We know that Audra will be in the best hands possible. 

We will be back all too soon. 

How Can You Help Us?

We haven’t updated in a while and with the temperatures dropping and the leaves changing colors, we know that October 7^th is just around the corner.  This means that Audra’s third open heart surgery (called the Fontan) will be here before we know it.

Right now we are in lock down mode where we are not taking Audra and her sister out to large crowds.  We are trying to keep everyone healthy so that Audra will be strong for her surgery.  Unfortunately, once Audra recovers from her surgery, we will be into RSV and flu season.  Since Audra will only be a few weeks post-op and will receive a $1000 a month vaccine against RSV, we are going to have another low key winter.  Just wanted to give you a heads up on that.

As October 7^th approaches, we also know (and appreciate) that people want to help.  We want to make sure that you know that your love, support and help are really appreciated and there are things you can do to help us.

Pray for us

Please keep Audra and our family in your prayers and thoughts.  We need all prayers we can get.  So reach out and talk to the powerful G-O-D with us (alright I may have watched The Mindy Project last night).  If we want some specific things to pray for, pray that:

Audra stays healthy so that she is strong for her surgery;

No one needs Audra’s scheduled surgery more than her so that her surgery gets bumped;

My parents have safe travels as they travel across the country to help us out;

The surgical team, and specifically Dr. Bove, is healthy and rested for the surgery so they are at their peak performance;

The surgery is routine and there are no complications;

Audra will have a quick recovery and her body will adjust to her Fontan circulation; and

Audra’s older sister will enjoy her time with her grandparents away from her parents as we help Audra’s “owie-heart” as she calls it.

Help Us with Audra’s Surprise Box

We are putting together a box with things that Audra likes that she can open whenever she needs a little pick-me-up, such as after a poke for blood, dressing changes, etc. Anything that is great for an 18 month old goes –balls, books, cars, stickers, Little People toys (the brand, not actual people, lol).  She especially loves books about animals and babies and especially lift the flap type books.  Also, we are looking for fun ways to get her lungs clear by blowing on things.  We have Gymboree bubbles and a few kazoos but any other (quiet) whistles, musical instruments, bubbles, etc. would be also appreciated.

Also, a few items for Audra’s older sister would be highly appreciated for visits as we are always working on sharing.

Help Us Decorate Audra’s Room

We would love to have signs, wall stickers, decorations to hang up on the walls of Audra’s room.  Hand drawn pictures or signs, paintings, coloring book pages, cards, whatever – it all works.

Also, Audra and her sister love opening cards so we would love to have you send or give us cards for both of the girls.  An occasional singing card has been known to receive extra attention :)

Visit Us

This is a pretty big change from the past when we didn’t want a lot of visitors.  While we obviously do not want anyone who is ill to visit, we would love to have you come visit.  The first couple of days will be rough and Audra may not be up for visitors.  But after the first few days, we are going to be getting back to normal while we are trying to get all of the extra fluid drained from her chest.  So visitors will be welcome! 

If you want to come visit, please let us know when.  We will put together a sort of schedule just to keep things sane on our end but we would love it if you could make it out to Ann Arbor!  Also, if you want to bring some lunch or dinner with you when you come, you won’t be turned away.  Hopefully our stay will not be too much longer than 10 days but hospital food, Subway and yes, even Pizza House get old quickly.

Donate Blood

Audra is likely to need blood during or after her surgery.  She needs generous donations of life-saving blood like yours because there is no alternative to human blood.  We have literally sat next to her as she received a transfusion and seen her change color from gray to pink.  It is really a miracle. 

If you haven’t given blood before, please consider it now.  Go to: http://www.redcrossblood.org/make-donation to find a blood drive near you and make a donation.  Audra and my family thank you in advance!  And believe me, if I can do it, anyone can do it!

Thanks for sticking with us!

All the best!

October 7

We got a date from Audra's surgeon, Dr. Bove: October 7. It will be here before we know it. Although we are not looking forward to the surgery, for obvious reasons, we are looking forward to getting it over with. 

We are also looking forward to meeting Audra's heart buddy, Wyatt, and his family this weekend. It will be the first of many play dates, I am sure!

Fontan Scheduling

Just a quick note to let you all know that we are scheduling the date for Audra's third surgery - the Fontan. Going a bit crazy. It will be good to be able to plan and then have the surgery behind us but our anxiety level is very high right now. It looks like we will get a date in October. 

More later!

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!!!