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!!!

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.

11 Months Old Today!

Audra is 11 months old today!! It is hard to believe. We have had a bumpy road but things are going well. Audra has a cardio appointment on Friday, and hopefully there will be no news from that. We will update more after that.

In the past month, Audra has been busy. She has cut three teeth with another on the way shortly, she started crawling, she officially says mama :) and she is looking less like a baby and more like a toddler. We are so proud that she is doing so well and feel so blessed. We count our blessings every day!

All the best!

Congenital Heart Defect Awareness - Day 8

Happy Heart Day!  We hope you make this a special day and remember those whose hearts are not as healthy.  On the final day of Congenital Heart Defect (CHD) Awareness Week, we are bringing you some facts about CHDs - some you may know and some you may not.

Shaun White as born with a Tetralogy of Fallot, a CHD for which he endured two open-heart operations before the age of one.  This is the same CHD that our nanny's son has.  Our nanny told us a story of a man who was in his 70's with Tetralogy of Fallot (ToF) and never had any surgical intervention.  He only found out that he had ToF when he got his oxygen saturation measured and had lived his entire life with a much lower oxygen saturation level.

You never know who you will meet that has been affected by a CHD.  I personally know 3 friends, 2 friends from high school, and 1 sorority sister who all have a child with a CHD - that I did not know about before our daughter was born with a CHD.  This is in addition to those we have met because of our involvement in the CHD community.

John Ritter died of an undiagnosed CHD.

Max Page, the boy who played Darth Vader in the VW Super Bowl Commercial in 2011, has ToF and had surgery on the same day that Audra had her catheterization in June of 2012.

San Francisco 49ers quarterback Colin Kaepernick supports CHDs because his parents lost two babies to CHDs before they adopted him. Here is the story: Kaepernicking for Kids.

There is no known reason for most CHDs, including HLHS.  Greg Olsen, Carolina Panthers tight end, had a son in October of 2012 with HLHS.  Here is the story: TJ Olsen Comes Home.

Congenital Heart Defect Awareness - Day 7

Today is day 7 of Congenital Heart Defect Awareness Week and we are checking back in with Meghan Roswick.  Meg has provided a ton of inspiration over the past year for us through her public Facebook page.  We follow along with her and her normal life.  She is training now to run the Cincinnati Heart Mini Marathon, which is the same race my sister was training for until she broke her ankle.

Last year, Meg posted a video about a typical day in her life.  She has a very normal life for a college kid, which is awesome to hear.  In the video below, she shares her top 10 worst and best things about having HLHS.  It is great to see that she has such a positive outlook on life even after giving out the 10 bad things.  It also made my heart melt to hear that she got the okay from her cardiologist to have kids.

Congenital Heart Defect Awareness - Day 6

This is a special message from the CHD kids of C.S. Mott Children's Hospital.  If you watch closely, you will see Audra and her friends Wyatt and Aly.

We hope you enjoy this “Mended Hearts” Valentine Greeting a few days early!




GO BLUE!

Congenital Heart Defect Awareness - Day 5

Today we have another guest post from a heart mom, Christina, whom I met after we both found out we were having a baby with HLHS.  Christina has been there all along the way and her son, Wyatt, has faced many of the same struggles as Audra has.  Her post shows how supportive others can be, even if we have never physically met - it is what many refer to as the Heartland.  I am not happy that our children and families have had the struggles that we have, but I am thankful that Christina and her family are in our lives.  We look forward to getting our families together someday soon - perhaps this summer when RSV season is over :)  Love you and your family too, Christina!!  Here is her post:

Hope and What I Have Learned Along the Way

One thing that I have learned over the 15 months is the meaning of a Congenital Heart Defect.  I had no idea how common it occurs and the devastating effects it can have on a child’s life.  February 7-14th is CHD Awareness Week.  To be perfectly honest one year ago I was probably as unaware of what that meant as you may be.  15 months ago I got the most devastating news of my life; the baby I felt moving around in my belly had a heart defect and a very serious one Hypoplastic Left Heart Syndrome.  Sitting in the doctor’s office he described how absolutely devastating a condition this is for my child, (at least I think he did). I remember him saying that only half of his heart had developed and then I think I tuned in and out of what he was saying.  I remember my first question was what can I do?  His response was that there were three options: compassionate care, meaning after he was born do not medically intervene and say goodbye, we could abort, or we could try for the three staged surgeries.  I am not sure that that is the question I meant but it was not what I wanted a doctor to tell me.  All I knew is that my son deserved every chance we could give him.  Therefore, I went searching for some hope.

The first glimpse of hope was with the cardiologist and discussion of the amazing place just a little over an hour away from our home-Mott Children’s Hospital.  Ranked #3 at the time for its work on amazing little “victors”.

The second glimpse of hope came with the meeting of two little warriors Bowen (HLHS) and Nora (HRHS).  They had both undergone 2 of their 3 surgeries and were doing great!  They gave me a vision of what to hope for :)

My third glimpse of hope was Sister by Heart and Aly.  Sisters by Heart is an amazing group that supports newly diagnosed families of HLHS.  Aly is the daughter of Jenny Lincoln one of the founders of SBH, Aly has been through all three surgeries and is doing great!  Aly also went to Mott Children’s as well.

Finally, my other hope and friend is Lora and her daughter, Audra.  Jenny from SBH connected me with Lora whom was due just a couple weeks ahead of me and was set to have Audra at Mott as well.  Lora and I began emailing exactly one year ago this week, as crazy as that is.  Lora and I have made a connection as only heart moms could, and only someone who was carrying that same uncertainty while carrying her baby could understand.  I was lucky enough to be pregnant with my first child Marshall with my best friend Melissa.  We grew so close and I loved sharing that experience with her! I WONDERED HOW WAS I GOING TO DO IT THIS TIME? Thankfully I had Lora and eventually just 3 weeks before Wyatt was born, Audra to inspire and give me hope!  Audra rocked the Norwood and had gave me so much hope as I went to have Wyatt.  Wyatt and Audra have had many of the same bumps in their path and Lora has helped me so much along the way!  I Love You, Lora!  Thank you for being my constant connection and sounding board as moms who travel a different path along the way.  

Congenital Heart Defect Awareness - Day 4

Today is day 4 of Congenital Heart Defect Awareness week!  Thanks for staying with us.  Today we have our first guest post.  This is a post from Esther, who is a friend that we knew for years through my husband's work.  She has two wonderful daughters and her second daughter was born only a few months after Audra with a CHD.  They also went to Mott hospital at U of M and her daughter had the same surgeon as Audra had - Dr. Bove.  I am very sad that we had to bond over such difficult health issues for our daughters, but we feel blessed to have Esther and her family in our lives.  Thank you to Esther for sharing!  Here are Esther's thoughts:

Congenital Heart Defect.  These words are usually meaningless until a doctor uses them to describe a problem with your unborn child.  Then those words stop you in your tracks and just about stop your own heart.  I heard these words used to describe a problem with our daughter at 20 weeks gestation.  Our precious girl was born with an atrial septal defect (ASD) and a ventricular septal defect (VSD).  This basically means two holes in her heart.  We were blessed to be cared for by a wonderful surgeon and incredible hospital, and at three months old my daughter had open heart surgery that saved her life.  Tears of joy fill my eyes even now as I recall how my champion 8 lb baby girl went through more than I could have imagined, and came out better than ever!  My family and I are so grateful for other CHD parents that prepared us, supported us, prayed for us, and cheered us on when times were tough.  I feel gratitude beyond what I can express.  The experience we have with our baby girl has made us different people, better people, and given us a CHD family.  Our CHD family has inspired us and created a community of understanding as we all take the journey together toward healthy hearts.  There are thousands of us with similar stories and wonderful children that have made our lives worth every minute.  A million thanks to the researchers, doctors, nurses, hospitals, care givers and families who have sacrificed so much for the congenital heart!  Bless you all!

Congenital Heart Defect Awareness - Day 3

A new heart warrior that we have "met" over the past year is Bill Coon.  Bill  was born on April 24, 1989, Bill Coon Hypoplastic Left Heart Syndrome.  His parents were told that the only option was a heart transplant and Bill had 21 days left to live.  If they waited longer than 21 days, the rest of his organs would begin to fail.  In the last hours of his 21st day, the phone rang with a donor from Canada. That night Bill became the fourth infant to receive a heart transplant in the Midwest, and the eighth in the nation.

Over the years, Bill did not suffer any complications. On June 8, 2009, he was rushed to the hospital where he was diagnosed with end-stage heart and kidney failure. He later spent 70 days in the Intensive Care Unit awaiting his second heart and first kidney transplant. His life was saved on October 21, 2009.

Bill wrote a tell-all memoir, "SWIM: A Memoir of Survival" which provided vivid details of his experiences.  It was very enlightening and difficult for me to read his memoir.  But it provides such a unique perspective and I couldn't put it down.  Of course, we hope and pray that Audra will not need a heart transplant but it is always an option that may be on the table.

We have an autographed copy of his memoir with a message made out to Audra.  He is wise beyond his years.  Below is an excerpt from an email that he sent to me:

On a deeper note, you mentioned your constant questioning of her future and if you are making the right decisions. A huge part of that speech that I never presented in Michigan was about not thinking about tomorrow. You need to focus on today. Focus on finding the beauties and happiness in today and allow Audra to find those beauties and that happiness. Overall, you need to allow her life to dictate the course of her illness as opposed to allowing her illness to dictate the course of her life.

Here is an introduction to Bill Coon:

Congenital Heart Defect Awareness - Day 2

Over the past year, one of the biggest sources of inspiration has come from other families who have gone experiences similar to ours.  If you have been reading the blog all along, you will remember Jenny and her daughter Aly.  Jenny was the first heart mom that I contacted after getting our baby girl's diagnosis and wow, did she make such a difference.  She set us up with Sisters by Heart, which is a group that sends out care packages to HLHS families and has a blog that provides resources for HLHS families.  She also answered tons and tons of my questions early on and has continued to support us throughout our journey.  Her blog postings and Facebook updates are constantly making me tear up and keep hope.  Thanks to Jenny and her wonderful family for providing inspiration to us!

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!