9 Months Old

It is hard to believe that Audra is already 9 months old. Time is really flying and it has been so long since we have updated. Sorry!

All is well as we get ready for Christmas. We did sleep training during the long Thanksgiving weekend after getting the thumbs up from our cardiologist. Audra took to it like a champ. The first night she only woke up two times and after three nights, she was sleeping through the night. Since then, we have all been getting more sleep. It has been great.

Audra had her 9 month check-up and is doing well. She is gaining weight well and up for feeding herself more and more.

She prefers rolling to crawling and can really get around.

We have so much to be thankful for and we are really looking forward to celebrating Christmas! We hope you have a Merry Christmas and a great 2013! We are hoping for an uneventful and surgery free 2013 :)

All the best!

Cardiology Update

Today we met with the cardiologist to have a check-up. The good news is that everything is status quo. Her heart function looks good. None of her valves are leaking. No collaterals. No coarctation. Everything looks perfect - well perfect for her, which I'd great. Her sat levels are some of the highest she has had. The cardiologist was VERY pleased to see how well Audra has gained weight. It really couldn't have gone better.

We discussed many things with our cardiologist. One thing is the timing of Audra's next surgery. At UofM, the third surgeries are typically done when the baby (toddler I guess) is 18-24 months old. We discussed that many centers are delaying this but UofM really isn't for various reasons. Since there are such rapid improvements in the surgeries, it is not settled if the delays are actually causing any long term benefits. Anyway, we decided that we can "plan" for Audra's Fontan in spring of 2014 when she is just over two and RSV and flu seasons are over. I say "plan" because as we know from the Hemi, Audra may decide otherwise and things may not go as we plan them.

We also discussed Audra's sleep habits and how we can improve them. We got the clear to try some sleep training with her. We are very excited to work on getting more sleep for all of us!!!!

All and all a good appointment. We don't go back to the cardiologist for another three months! Our next doctor appointment is for Audra's 9 month check-up. It is such a change from the days of constant appointments and home visits.

We are in such a good place this thanksgiving and have so much to be thankful for!

8 Months Old

Today Audra is 8 months old!! How quickly the time passes. She continues to amaze us!

Today we are thankful that Papa arrived safely home from his business trip. He is really our rock and we missed him dearly!

Today also marks 12 weeks without a feeding tube! There isn't a day of those 12 weeks that has gone by where I was not thankful that we persisted to get rid of the tube. It is hard to think of how different our lives would be but we are beyond thankful that Audra has really taken off with eating on her own.

Tomorrow is Audra's cardiology appointment. So thoughts and prayers are appreciated for that. We will update on the appointment when we have a chance.

One Year Ago

One year ago, almost to the moment, we were sitting in our level two ultrasound anxiously waiting for the tech to get through with the scan so we could go merrily on our way to our parenting group.  As you know, this did not happen.

It is very hard to write the post because we have been through so much this year but we feel very blessed and thankful to be in the position that we are.  It is a weird dichotomy.  Of course, we wish that our daughter’s heart was not underdeveloped on one side.  But given all that could and did happen in the past year, we are in a good place. 

Right now, we wish we could travel back to the bad news room we were sent to after receiving Audra’s diagnosis and tell our past selves that everything is going to be okay.  Then again, right now I wish that our future selves would do the same.  Of course, this is not going to happen.  All we can do is keep on keeping on, as the saying goes.  We do not know what is around the next corner and we never did.  That is the ironic part.  You never know what the future has in store for you.  We were just in a place of ignorant bliss that allowed us to ignore this fact.  Now, we cannot ignore it.  But despite this fact, we are in a good place.

Audra is thriving!  She has continued to gain weight and develop on track.  She is eating solids three times a day and loves everything we put in front of her.  She loves when her older sister makes her laugh (and her older sister loves making her laugh).  She is getting up on her arms and her legs to start crawling, although not at the same time.  She can sit on her own but not when she gets too excited – she will still topple over.  All is well, although I would be remiss if I did not mention her hate of sleep.  It is such a change from our older daughter who loves sleep.  Audra, on the other hand, is a huge sleep fighter and would probably stay up all night if we would let her.  So if any parent who was once sleep deprived and found a trick to help your baby sleep, PLEASE let us know.  We will take all the advice you guys have :) 

We have a cardiologist appointment next week on the Wednesday before Thanksgiving.  The Wednesday before Thanksgiving of 2011 was the first date we met Audra’s cardiologist before we went over to UofM.  We are hoping that this year’s meeting does not uncover any unexpected complications and that things continue on the status quo.  We do, however, plan on discussing Audra’s third surgery – the Fontan.  There are some different theories out there for the Fontan and we plan on getting more information about them.  There are two different types of Fontan surgeries offered and different centers have different timings for both types of the Fontans.  We want to make sure we have the most information possible so that we are making the best decisions possible.  It is hard because hindsight is 20/20 and we don’t have the luxury of hindsight right now.  Again, where are our future selves to help us out?!?

Anyway, if you are reading this, we want to thank you for your support!  We couldn’t have made it through the past year without all of you.  From reading these posts and knowing what was going on, to the phone calls, to the emails, to the cards, to the texts, to the thoughts and prayers, to the meals, to the gifts – we appreciate it all… more than you know.

All the best!

Discharged!

Discharged? You may ask. Yes, discharged. Today was our last home care nursing visit. This is very exciting and also scary at the same time. Our nurse has been coming since we got home from the hospital in April. She has been through it all with us. She has given us the help and support we needed. I told her that without her support, Audra would probably have a G-tube and our lives would be a lot different. She didn't think that was true but I really do.

Audra is looking good on all accounts. We feel very blessed. We are cautiously optimistic as usual :) We do not know what is around the next corner but we never did anyway. We are just much more aware of this now.

Our next appointment isn't until right before Thanksgiving! Craziness. We aren't sure what we will do with so many appointment free weeks! Well, we do have to drop into the pediatrician to get some shots for flu and RSV. Not fun but necessary.

Thanks for your support!

We Won!

Now I am not talking about the Tigers game on Thursday to advance to the World Series or the UofM win over State earlier, which both happened. No, we won our appeal to get the feeding program covered by our insurance! We are so excited!!!!

It was a bit of a roller coaster this week to get here. On Wednesday morning we got a phone call from the claim supervisor handling our claim that we would get reimbursed. We were so happy and called and texted many. Then three short hours later she called again because the senior VP and chief medical officer of our insurance wanted to review the appeal. I get it. I am sure he was questioning why the program was approved in the first place. I made it clear that it was unacceptable to indicate that we won our appeal and then to take it back. They promised a decision by the end if the week and we got it. Our insurance wanted to point out to us that this program is not a covered benefit but because they looked at the bigger picture, they covered it just for this instance. I am quite confident that it was the 100 pages we submitted - a 14 page memo with references and attachments. We hammered home our point that if we did not do this program, we would have done surgery for a G-tube at a cost nearly 10 times the program cost. So they agreed to cover it "this time".

We are feeling pretty pleased. Everyone is doing well. Audra is already 7 months old! She hasn't been eating a ton lately but she is getting another tooth. She still isn't the best sleeper either.

Time to sleep - I am doing the shortest leg of the relay for the Detroit Marathon in the morning. It is just under a 5k. Hopefully it goes well.

All the best!

First Tooth

Audra's first tooth finally broke through today! It is so exciting - although Audra is a bit more cranky than excited ;) The second one is close behind.

Our week went well. We like our new pediatrician and had a good first appointment. We filed our appeal to try to get our insurance to cover the feeding program - they would cover a $37,000+ surgery to get a G-tube with no questions asked but not a feeding program that is a few thousand and has a success rate of nearly 100% for cardiac patients. Craziness! Anyway, we submitted our 100 page appeal and will hear back in 20 days. I do not have high hopes but stranger things have happened.

Until next time...

6 Months Old

Happy 1/2 Year Birthday to our little baby, Audra! She is getting bigger and bigger every day and continues to do well. We are so very thankful. Audra is interacting more with her older sister and it is such a joy to see. They are going to have such great fun together and we are so blessed to have them :)

All the best!

Firsts :)

Audra continues to do well. She is eating a lot and growing like an awesome weed. We love it. She has had some fun firsts recently.

Audra had her first visit to the zoo. Since it is close and we have a membership, we made a quick family visit on Saturday. The weather was perfect and it wasn't too crowded. We made a half loop that included the tigers, lions, monkeys, apes and chimps - all of our older daughter's favorites :)

Audra also had her first cereal this weekend. She did so well. This is only possible because we were able to wean her from her feeding tube. So happy she has done so well!

Finally, Audra got to go to her first parenting group meeting. Most of you know it - it is the group we have met with who all have kids born around the same time as our older daughter. It is such a great group of people and Audra enjoyed meeting and smiling at everyone. Although we were missing a few friends!

Anyway, no news is good news and hopefully as things settle into our new normal, there won't be a lot going on.

Please remember to keep Audra's heart buddy, Wyatt, in your prayers. He is still recovering from some rough patches after his Hemi last week. He is making progress and we want it to continue!

Good News!

Audra does not need blood thinner any more! Such great news because the blood draws go away along with the blood thinner. Our appointments today were very nice. We were at the vascular surgery center at the main hospital. It was very nice but you can tell they do not deal with the little ones often.

And more good news - Audra's heart buddy, Wyatt, is out of surgery and doing well. Keep him in your thoughts and prayers please :)

Breaking New Records!

Audra is eating more and more! Yesterday she ate the most she has EVER eaten - more than when she had the feeding tube. This is so exciting! She continues to do well and feeding time is a much shorter and less painful process.

We would appreciate a lot of thoughts and prayers tomorrow for both Audra and her heart buddy, Wyatt. Wyatt is the little guy who was born a bit after Audra. He is having his second surgery (the same as the one Audra had in June) tomorrow morning. We will also be at UofM tomorrow for a follow-up appointment. We will decide if Audra has to be in blood thinner for three more months or not. We are hoping and praying that she is well enough for the or not.

Thanks for your support!

Finishing Bottles!

Audra is doing well and eating like a champ. It is no longer a struggle to get her to take a small amount. She eats what she wants, when she wants. She started to actually finish her bottles occasionally! By finish I mean leave just a small amount behind. We have increased the amount we put in each bottle. Exciting stuff :)

Each day Audra is drinking more and more. She has gained weight for the past few days and we couldn't be happier! She is also rolling over like a star.

Go Blue!

Tube Weaning - A Week Tube Free

It has been a week since Audra had her last tube feed. We couldn't be more proud of this little girl. She is such a champ. She is really coming on strong and eating well. She is eating every two hours during the day and 5-6 hours at night. We will take it :)

Audra is also close to getting her first two front teeth. I didn't know teething was contagious ;)

Thank you for all of your support throughout this process. It has meant a lot to us. Also a HUGE thank you to our nanny who has been so very awesome and supportive through this (and everything else too). We couldn't do this without you!!!!!

Tube Weaning - Day 9

Today was a good day for all. Audra continues to do well without her feeding tube. And her older sister seems to be on the mend as well. We hope to have a quiet and productive Labor Day.

Tube Weaning - Day 8

Should it still be called tube weaning if we are now just working on oral intake? Yes, it is still dealing with the issues from the tube dependency. Today was another great day for Audra eating wise. Her sister and UofM football are another story. Audra again took more today orally that she ever has. She continues to do great and we should see her weight stabilize here shortly. She is such a champ.

Her older sister is getting in the rest of her two year molars and is not doing well. She is grumpy and has a stuffy nose. To top it off she took a spill outside this morning and bumped her head. She was not in a good mood and has already been awake more times than
Audra tonight.

It was also not a great night for UofM football. Unfortunately my boss was at the game and is a huge Bama fan. It is all good fun. Good to have the boss happy, I guess.

Tube Weaning - Day 7

Today we had a visit from our home care nurse. It was an odd time but it ended up working out. Audra is doing well. All of her stats look good - other than the obvious one. She lost some weight, which we knew. She is still well below 5% weight loss, which is our check point with are cardiologist. When (if?) she gets to 5%, we have to evaluate if we should continue or not. 10% weight loss is the threshold for having to put back in the tube. We are hopeful that we won't get to that point as every day Audra is eating more. She is on track today to have her biggest eating day ever. She also nearly finished her bottle last night for the first time ever. We remain optimistic :)

Get fired up it's (almost) game day! Go Blue!

Tube Weaning - Day 6

Today was another day of progress for Audra!  She had an all time high for both overall oral intake for the day and for one session.  This was the good news.  And now for the bad news.  She still isn't taking as much as we want her to and she had her first weight loss.  It was not significant but hopefully we can turn this around!  We are proud of the progress that she is making and are hoping and praying that she continues along this path.

I have been emailing with some of the moms that did the same program and have heart babies themselves.  One mom is in Ann Arbor and shared her feeding journal.  It is nice to have to compare - although every child is different, we know.  But it helps to see we are right on the same path that they were on and their baby succeeded :)

Tube Weaning - Day 5

Today was Audra's first tube free day! She was in a good mood with her new freedom. Now comes the hard part - eating all on her own. She ate more today orally than she ever has before. That is the bright spot. But this is still not enough. We expect that she will gradually build up over the next week or so. She has her ups and downs and we look forward to making more progress in the small steps that we can.

Last Tube Feed (we hope)

Audra just finished what we hope will be her last tube feed!! She took the most she has ever taken from the bottle today but it is still not enough. Now she just needs to pick up the pace.

All went well with our friends' baby's open heart surgery today. She is already starting sprints to come off the ventilator. Good news!

We hope to have good news of our own with Audra's feeds. When she wakes up next out the tube will come! Finally!

Tube Weaning - Day 4

Today is Day 4 into the tube weaning program and tonight the tube comes out! We are very excited and nervous about this.

We have been receiving great feedback for our net coaching. It is do great to feel like we have a plan and to be trying to do something to get rid of Audra's feeding tube. It seems like we have been living the definition of insanity - doing the same thing and expecting different results. So it is good to be taking steps to move forward.

Overall, Audra is doing well. She still gets frustrated and seems to wait for her belly to magically fill itself. But then she will go and have a good session. She still has a long ways to go but I do feel like we are making small steps in the right direction.

The blood draw yesterday went well and the results were good. Next up is the appointment at UofM to determine if we need to continue on the blood thinner for another 3 months or not. Hopefully NOT!

Also, thoughts and prayers are appreciated today as friends of ours have a little one going in for open heart surgery at UofM.

Tube Weaning - Day 3

Day 2 was another good day with Audra eating more orally than on day 1 and the most she has ever taken! At her 9 pm feed, you can tell she is worn out from the day and falls asleep shortly into her tube feed. She is only getting tune feeds at 9 pm and 3 am. Tonight we are skipping the 3 am feed. And then the 9 pm feed will go and the tube will come out.

This morning she is hungry but isn't interested in eating. Hopefully this improves quickly.

We have another blood draw this morning too. Hopefully this will be her last one for this clot! We have an appointment at UofM on September 10 to look to see if her clot is dissolved. Depending on how everything looks determines if we get to stop her blood thinner and the accompanying blood draws or have to continue them both for 3 more months.

Tube Weaning - Day 2

Yesterday was successful in small steps. Audra took more than she ever has orally and we only used the tube twice! Those were for the night feedings and we are most concerned with those.

Audra took more orally than her basal needs, which is awesome. And she is generally interested in eating when we are trying to feed her. Hopefully this continues. Trying to feed a hungry baby who does not want to eat is very frustrating. The tube supplements put us pretty close to what she would typically get in a day with a couple of throw-ups (glamorous, I know).

So far so good today. She has taken more than this time yesterday. We are not supposed to focus on the numbers but we have to keep close track of them, which makes it hard not the focus on them. We are supposed to focus on how she is eating - only feeding her when she is interested and stopping at her first sign of disinterest. Her weight was slightly above her starting weight from yesterday!

We still have a long way to go but things are going well! The next step is to drop the 3 am tube feed. Audra rarely wakes up for this feed so we are pretty nervous how it will affect the rest of her eating. Only time will tell.

Tube Weaning - Day 1

We are starting tube weaning today. It came about rather quickly. We found out on Thursday that our claim to insurance was not submitted as urgent. So it had to be resubmitted and we will not get a decision until Monday. We also found out that we could pay out if pocket and get reimbursed if insurance covers it. We had said all along that we would do it even if insurance doesn't cover it so we signed up.

Yesterday we got set up into the net coaching portal where we keep the feeding charts, communications, videos and such. We made a video and uploaded it early this morning. We got feedback from the Frau Professor Doctor (that is what a female doctor who is a professor is called in German) and we have already cut down her tube feed this morning. Here we go! Come on Audra! You can do this!!!

Today Audra rolled over for the first time. Maybe she was just so excited about starting the tube weaning?!? Okay, I doubt it. But we are very glad she is rolling over. Another reason to get rid of the tube!

Five Months Old & Cardio Visit

Audra is already five months old! Wow! Time has gone by quickly but we have packed a lot into these five months. And she is doing well. She is in the 10-25% for both weight and length. It is all too common for cardio babies to be off the charts (on the bottom). So we are very happy with her growth.

Today was a crazy day and we had a good appointment with our cardiologist. Audra's heart function looks really good, which is music to our ears. Dr. C thought that Audra clinically looks great and loved her rolls :) We got to cut down on some of her meds, which is always a good thing. And we don't go back for THREE months. Wow! That is so exciting and scary at the same time.

Next up is feeding. We are waiting to see if the feeding program is covered by our insurance. The decision should come soon (tomorrow we hope). Then we can decide how to move forward. Overall, Audra has been taking more of her bottle. She even did well with her number 2 nipple today. She still doesn't take all that she needs, especially at night. So we will see what we have in store for us with the feeding program.

All the best! Until next time.

Tube weaning

We will soon be starting a feeding tune weaning program! We are so excited and nervous at the same time :)

It is a net coaching program so all of our support is online and it is based out of Austria. The website to check it out is at: notube.com.

Today we talked to our cardiologist and got her official approval. It was helpful that she knew the cardiologist of one of the other heart moms that I have been emailing with about the program. We discussed everything that we need to be looking for. This is the first time we feel like we are getting some support for this feeding issue. We have had so much support for all of the cardio issues and then we are left to deal with this major feeding issue. The only support we have been given on it is to get a G tube. We want to give Audra the opportunity to be able to eat on her own before we do that. So here we are at the program.

We are hoping to start next week but we shall see. Audra has been doing well. She is taking more of her milk orally, which is encouraging. I hope once she figures out this hunger thing, she will take off in eating.

Happy Dream Cruise Weekend :)

More Details

As you may have read below, I have been concerned that Audra is developing congestive heart failure. It wasn't a large concern or anything that was sending us running to the hospital. But it was enough to make me worry and question every little thing. Some may call it paranoid. I prefer observant :)

Well it turns out that for now, all is well. Audra is growing so well and really making up for lost time. Her lungs sound clear, which is obviously very important. Her oxygen saturation levels have been climbing as our cardiologist has predicted. Her blood pressure is lower than before. And she had another good weight gain. All good things. So perhaps I need to relax a little. Easier said than done.

Our phone call with the cardiologist had good news and bad news. I will start with the bad news first so if you are a good news first kind of person, then skip to the next paragraph and come back after reading it. So the bad news is that the lab ran the WRONG test on Audra's blood from Monday. She has to get blood draws to check her levels of her blood thinner because of that clot from the line in her leg back in June. We go to the cancer center because they are usually very good at drawing her blood - we had issues at the regular lab. Audra is a hard poke as they say. It is just awful. Anyway, we have had to go back one other time but we are just so upset this time. I spent a very good amount of time on the phone expressing our displeasure with the situation. I told them perhaps we should just go over to Mott if they are so incompetent We are just beside ourselves that she has to get this draw again. And who is to say it will be done properly? Well, our cardiologist has assured us she will do everything she can. The head of the lab called to apologize and gave me her cell phone number. When we went for the draw, the head nurse from our cardio office went with us. She sat with us while we waited to be called and got impatient as we usually do. The nurse discussed the procedure with the lab nurses. Basically the nurse from Monday (who was not around thank goodness) read the order wrong and just entered it wrong. We confirmed about 100 times the proper test. The nurse then did an awesome job with the draw. Then they gave Audra a teddy bear, some flowers and a Meijer gift card. It doesn't make it any better but at least they tried to do something. Her levels look good and we are set for another two weeks. September cannot get here fast enough as that is when we have our follow-up at UofM on the clot.

Now the good news. Our cardiologist has given us the preliminary green light to do the online tube weaning program for Audra. We are so excited. It is a net coaching program that is 3-4 weeks and will get her off of her dependency of her feeding tube. It basically reduces the amount we give her through the tube so that she gets hungrier and eats more. We have just registered for it and now have to do the medical evaluation.

We have been in contact with two other heart moms who have gone through the program, which is so great. One even goes to UofM for her child's treatment. Anyway, once we get more details on the feeding plan we will be able to figure out our plan. But for now we continue to improve :)

Thanks for the support!

Good Nurse Visit

Just a quick update to let you know that our visit with our home care nurse this morning went well. Audra is doing well and our nurse thinks that Audra was just warm.

Now we are waiting for a call back from our cardiologist to get her approval for the feeding program. We talked to her yesterday and she wanted to review the material and get back to us. Looking forward to speaking with her. We will update again soon with more details about the feeding program and everything in general.

Thank you for your continued support. It is really helpful when we have these times of extra concern and just in general :)

August 8th & Tonight

August 8th was not what we thought it would be back in May and early June. At that time, of course, we were scheduled to have Audra's Hemi on the 8th. But as you know, we got this out of the way in June. So August 8th came and went like any other day.

It was actually a rather hectic day including our older daughter getting herself out of her crib. But we did not have to get over to Mott early in the morning and even better, we are not there now. We are very thankful to have this behind us.

We have been working on feedings with Audra and she seems to be improving overall. We are looking into a tube weaning program that will help us through Audra's dependency on her feeding tube. We hope to get the thumbs up from our cardiologist. We hope to talk with her on Monday.

Tonight there is a bit of unease in our house. We are always "keeping on eye" on this or that but tonight Audra had a flag that is really making me worry while my husband tries to keep me calm. She was sweaty when he went to put her down. This can be one of the symptoms of congestive heart failure. But it could just be that she was just hot while she was being held. We took her temp and it isn't high now. She has gained a fair amount of weight over the past few weeks, which if it is fluid retention is another symptom. But she is not showing signs of retaining fluid and our home care nurse even mentioned that fact on Tuesday. Audra just seems to be growing well. Her breathing is normal, which is very important and another symptom it she had an increased breathing rate. And there are not any other symptoms either.

Congestive heart failure is when the heart can no longer pump enough blood to the body. We are always supposed to be on the lookout for any symptoms. It builds gradually and the first steps to treat it are with medicines. We will talk to our cardiologist on Monday to see what she thinks. Audra is already getting her blood drawn on Monday so maybe the doc will add another test that gives us some more info. Then again, maybe I am worrying over nothing and it is just hot in here. Ugh. I hate worrying.

6 Weeks Post-Op

Today Audra is 6 weeks post-op from her Hemi! Wow! We never thought we would be saying that in July!! She was scheduled to have her Hemi on August 8. Her pre-op days were scheduled for tomorrow and Wednesday. Things never seem to go as planned these days and we just try to go with it.

It feels so good to have 2 of the 3 required surgeries already in the past at this point. And now Audra is considered to be recovered from her surgery! She no longer seems in pain when she sneezes or coughs and things are settling into our normal.

We are getting back on the schedule with Audra's feeding pathologist so that we can make more progress with her feeding.

Also, we found out today that our pediatrician is on leave for the next few months. Not such a big deal for our older daughter but a pretty big deal for Audra. There are only 2 docs left in the practice - one we met with and doesn't really get that we need some extra help with Audra and the other only works part time. So we are looking for recommendations for a new pediatrician practice, I think.

But for right now we are going to sit back and enjoy the fact that Audra is doing well after two open heart surgeries!

Life is Precious

Having a child with a heart defect, I feel like we really do treasure our time and remember that life is precious but there are harsh reminders all around. This morning we found out that my cousin passed away late last night after she went into cardiac arrest during a "routine" surgery. I say "routine" because, as we have learned, any surgery is not to be taken lightly. It is such a shock to our entire family. She will be missed by so many. Please remember to tell those you love that you love them and do not take your time here for granted.

Our precious little Audra is doing well. We switched up what we fortify her milk with and she seems to be doing better with it - finally. She still isn't taking enough orally but she shows some signs of improvement.

She is sleeping better - in her own bassinet, which is actually the same one I slept in :) So things are looking good there.

Thank you for your continued love and support. We couldn't do this without all of you!

What a Day!?!

So when I started writing this post, it was quiet at our house after a hectic day filled with running around to Audra's cardiologist appointment, tons of work meetings and a parenting group meeting. Now I write with the "gentle" purr of our generator running in the background because we lost power a few hours ago. It wouldn't be much of an issue if we didn't have about three months of milk stored in our deep freezer. Luckily my husband lives by the motto "be prepared" and he was ready to spring into action. We are expected to have power back in the morning. But for now we are running with our high capacity generator. What a great husband and dad :)

On to the rest of the post... We are getting to our new normal and finding our routine now that I am back to work. So far, so good with plenty of bumps :)

We had our first post Hemi visit with Audra's cardiologist. She said that Audra looked "great" cardiovascularly and has gained a nice amount of weight even though we are low on the calorie side for her milk. The doc expects Audra's oxygen saturation levels to continue to increase a bit more and is still concerned (as are we) with Audra's feeds. We are going to go back to the GI soon and get back to our feeding therapy. We may also see an ENT because her voice seems a bit raspy. We will keep our ears tuned into that to see if we need to schedule that appointment. Never a dull moment.

UPDATE: I never updated to say that power did come back on after 47 hours! Thank goodness for the generator!

Huge Thank Yous

Tonight we want to say THANK YOU to Grandma and Grandpa who basically dropped everything on a Monday afternoon and came to us for a much longer than expected stay. They have been such a huge help taking care of (and spoiling) our older daughter. They brought her over to see us while we were at the hospital and took her back home to keep her sort of in her routine. We could not have done this without you guys (for either of the first two surgeries) and we will miss you until we get to see you again soon.

Also a big thanks to our nanny who helped out all the time these past few months and is always giving us kind words of encouragement and wisdom. We could not have found someone better to watch our precious daughters :)

Life at home is starting to settle into a routine. We had our first visit from our home care nurse and I am getting ready to go back to work. Audra is doing well although we are not sure if she is gaining weight on her unfortified milk and in our first attempt to give her some that was fortified with a gentle formula, she did not do very well. We will see how it goes with our next attempts. On a positive note, she is picking up steam on her bottle feeds. She still has a way to go but is doing much better.

Discharged!!!

We have just been discharged but we are waiting on a delivery of our medical supplies. The sooner we get that, the sooner we can leave! We are so ready to get home although both my husband and Audra are snoozing :)

Thanks for all the love, prayers and support you all have provided over these past months! It really means so much to us. Here is to finding our new normal!

Always Tomorrow

We are starting to feel like Annie since we hear tomorrow all the time. It looks like Audra won't get to go home until Saturday. Hopefully this stays the case and we do not have any issues that further prolong her stay. We are all ready to go.

Getting Close

We are getting close to being discharged and going home! Yay! We are still hopeful for tomorrow. Audra is doing better with her feeds and is gaining a small amount of weight. For some unknown reason she is not tolerating the fortified milk that is the same as she had pre op. So right now she is just getting straight breast milk and we have a gentle formula that we may fortify her milk with later if needed.

The other concern is still her blood pressure. It has only come down a bit with her medicine and they will increase her dose. We need to get the right amount before we leave because we do not want her blood pressure to bottom out after we are already home. Hopefully this amount today does the trick and we are good to go tomorrow. We shall see.

Audra loves going for stroller rides all over the hospital. We are looking forward to our usual visit from her big sister, grandma and grandpa to get out of the room :)

Still Working Towards Home

Audra's tests yesterday all went well - echo, EKG and chest x-ray. Her cardio function all looks good. The unexpected news is that Audra's right diaphragm has regained function. Such good news.

Two things are now keeping us here. The first one is her feeds. Audra has been struggling to keep them down and is not gaining weight. We are working on this as well as getting her to take the bottle again. She wants little to do with it. We have to get her back to drinking fortified milk (we took her off to see if things clear up) and regularly keep it down.

The second thing -that is a new development- is her higher blood pressure. It has been borderline high and they are finally deciding to give her some medicine to lower it. They have to monitor her blood pressure frequently as she starts getting the medicine and for a few more days. So it looks like we will be here until Thursday or Friday at the earliest.

Audra has been generally happy other than when she is getting messed with. She is quick with a smile and loves going on stroller rides. Even after she pukes on you she will give you a huge smile that melts your heart. She isn't connected to any machines or anything so we are free to take her around. She may join her sister for a short time at the Game Day Experience, which is the playground our older daughter loves so much. We shall see how the afternoon goes.

General Care

We moved today to the general care floor. This is a step in the right direction. We are working on feeds with Audra as she is still struggling with taking her milk orally and throwing up a lot.

In the morning we have the tests that Audra needs to be cleared to go home. So we are on the right path. It feels good to finally be out of intensive care.

Waiting Again

Audra is doing well and got her floor orders yesterday - meaning we are set to go to general care. But again, there are no beds so we are waiting. She is still getting some oxygen over a tube but has been doing well with the very slow ween.

She got her central line out yesterday so this means we can pick her up when we want without a huge effort. It makes things much easier.

We are also working on feeds. She has been having some spit ups but nothing too concerning. Just enough to get all over her swaddle blanket each time and get out some of her meds. We are going to start again today with the bottle. Hopefully Baby Audra will take back to her bottle quickly and even better than before. She has been staying strong with her paci so this should help with the sucking. We shall see.

When we finally get to the floor they start mentioning that exciting word - discharge. We are hoping to get out of here before the 4th of July because we have coordinating 4th of July outfits for the girls. We bought them weeks ago and never thought we would be at the hospital now. Just goes to show that you never know. We don't want to get ahead of ourselves but at least we are on track!

Finally, today is the last day of the year for the fellows here. Some will still continue, some change assignments and some are done and moving on. One fellow of Audra's surgical team, Steve, had his last day last Friday. He worked on both of her surgeries so far and did a great job closing her chest. He is off to Australia for two years. Our favorite fellow, Jay, will still be in the clinic and one of the fellows who has been following her for much of Audra's stay, Libby, has one more year. It is odd to think that for Audra's Fontan surgery (when she is 18-24 months old) all the fellows will probably have moved on. It was nice getting to know them pretty well with our two stays so close together.

Progressing Yet Again

Audra's chest X-ray from this morning looked good. She is being weening to room air here slowly, maybe sometime tomorrow. She should also be getting rid of her central line tomorrow. So things are progressing right along. Our attending mentioned that we are getting towards moving out of intensive care but not quite yet. We are hoping that things continue in this direction.

As always, thanks for your support. It means a lot!

Off the Vent Again

Audra came off the ventilator again this morning and is doing well so far. Her right lung sounds good and we will see in her morning x-ray where her diaphragm is. If it is still low, as it should be, she will move from the breathing machine she is on now to one that doesn't provide positive pressure in her lungs. We are progressing slowly in hopes that the small changes keep her diaphragm in its place. The rough part is that after all this there is still a chance she would need surgery to pin the diaphragm down. It is a minor surgery (so they say) and would add in a few extra days to our extended stay. Of course, we are hoping and praying that this is not the case but will be waiting to see what will happen these next few days.

Audra is much happier off of the vent. She is able to have better quiet awake time and enjoy being held.

Rough Day

Today has been a pretty rough day. Audra's right diaphragm is paralyzed. Right now it is not moving up to restrict the air in her lungs but once she is off the vent, it may move up and stay up. So the plan is to take her off the vent tomorrow morning to see how her diaphragm and lung do. She may have to have surgery to keep the diaphragm down. Whether she has surgery or not, the diaphragm may regain function in 6-10 months. Then again, it may not.

We also did a follow-up hearing test that found that Audra has some hearing loss in her right ear. She cannot hear high tones. Right now it is too early to say if this will have any effect on her or not.

Please keep Baby Audra in your thoughts and prayers. She could use it!

Back on Track

Since going back on the ventilator yesterday, Audra has done well. We popped her right lung open and her oxygen saturation levels have shot up.

Her echo did not show any cardiovascular issues although it did show her right diaphragm was not moving as much as we would like. We have to keep an eye on this. If she goes off the vent and her right lung collapses again, it is most likely due to the diaphragm issue, which we would then have to deal with. But right now things are going smoothly. We have been able to ween the settings on the vent. It also does not look like she will need to have a cath at this point.

Since it is Sunday, it is a day of rest. No really, they want to keep her on the vent until the morning to give her a chance to rest and recover. We will likely do sprints tomorrow morning to move toward extubation (getting off the vent). So hopefully, there will not be much to report here today.

We finally moved to a private room last night! As we learned, a private room dies not indicate progress or lack thereof. You do have to be stable enough to move out of the bay but it is more an issue of room space and staffing. Nonetheless, our ears were ringing last night at how quiet it is here. It feels great to have our own quiet space.

Vent Again

Audra is going back on the ventilator as we speak. They are going to try to put in a new line in her artery as well. Then she will get an echo - from our favorite fellow who did all her prenatal echos.

After this we see how her oxygen saturation levels are and look at the echo to determine if we need to have a catheterization. The cath would probably be on Monday if it is necessary. We shall see.

No Clue...

Right now we don't know what the day holds. Around here you never can know but today is especially uncertain.

Audra did not have any improvement in her lung. And now her oxygen sat levels are not where they should be for the amount of oxygen she is getting. We (ok the docs) are not sure what is to blame for this. They do not think it is the lung and think perhaps there is another issue. We will have an echo here shortly but they don't expect to see much on that. Next steps would be going back on the ventilator and possibly doing a catheterization (which is another surgery). And we just don't know.

On another note, today our oldest niece turns 19 :) I remember being at the hospital with my sister like it was yesterday! Yikes, time flies!

No Progress

Audra did not make any progress today on inflating the bottom portion of her lung (but it did not get any worse either). We are starting two breathing treatments that may help her. We are praying that her lung inflates again so that she does not have to go back on the ventilator, which would mean 24-72 hours on the ventilator and more sedation and staying in intensive care until she recovers. She will get a chest x-ray in the morning to assess her progress. Please keep baby Audra in your prayers.

Things Happen

So things happen for a reason. Yesterday we were cleared to move to general care where there is much less nursing attention. Instead, we stayed put at the bay but with our nurse covering two babies instead of one. Audra took a slide backwards in her breathing yesterday evening into the night.

She is back on a positive flow breathing machine because one of her lungs has decreased capacity and may be partially collapsed. If we were in general care already, it may have even been worse than it is. With that said, we were less than impressed with the care we were receiving yesterday evening. Fortunately, the day nurse who has been with Audra all week is back and ready to get her lungs fully inflated again. We will work today with her to see if we can get her to clear this up on her own before taking any steps tomorrow. We knew the lungs were an issue since she is so young for this surgery and this is why they like to wait until these babies are older. This was obviously not an option for us.

It looks like we will be in intensive care longer and how long depends on our little girl. We are hoping to move to a private room that is much quieter and obviously, private. We will find out about that later this morning.

No Room to Move

Early this morning we got the green light to move to the general care floor. Not just a private room or moderate care, the general care floor! A huge step! But unfortunately we have to stay put due to room availability and staffing. They will check again at 3 but it looks like we will spend another night here at the bay. We are not moving to a private room because of staffing. But the good news is that Audra is doing well and is ready to move even if we don't get to.

Audra has made so much progress and continues to show us what a strong little girl she is. It is still amazing to us that she has her Hemi behind her already.

She still has a ways to go but she is doing well :)

Off the Ventilator

Audra has really made progress today. She was taken off the ventilator and is doing well. They leave the machine for a while just in case and so we snapped this photo.

She is looking forward to filling up her belly here soon. We have to wait in case there is an issue and they need to put the ventilator back in. It is best done without a full stomach. But we are almost to eating time.

Thanks for your support and the comments too. For some reason I cannot comment back from my phone. Not sure what my deal is but I cannot get it to work. But thanks :) We really appreciate all the love and support we continue to receive.

Look Around

Here at the hospital, you never have to look far to see someone who is struggling. It really makes you appreciate all that you have.

On Monday, while waiting for updates on Audra's surgery in the waiting room we saw a team on doctors take a family off into the private consultation room. Some of the family members came out in tears and the doctors were there with the parents for a long time. We can only imagine what bad news they received and say some prayers for them and their little one.

In the area next door a newborn who was born at 3:30 am just arrived via ambulance. His mother is still in the hospital that she delivered him at via c-section and he is having a difficult time. They are trying to stabilize him and talk with the dad to explain to him all that is going. Prayers for them as well.

Despite our ups and downs, we are thankful that we have been blessed with all that we have and pray that Audra has a smooth and uneventful road ahead of her.

It looks like Audra may get off the ventilator today. She has done well on the first sprint and is currently in her second sprint. She is getting hungry since she cannot eat in preparation for getting the ventilator out. She is also having some awake time, her leg is looking better and her headache appears to be going away. So things are moving along :)

Lots Planned Today

After a crazy evening yesterday with the clot issue, Audra had a quiet night and has a lot to look forward to today. Her thrombosis seems to be improving. The blood flow is looking better and is expected to be back to normal here this evening or tomorrow. We will continue to monitor her, of course.

Audra is scheduled to get her chest tubes out today. She will also start sprints to ensure she is ready to come off the ventilator today but she might have to stay on it until tomorrow. She is weening off some of her pain medications and has been able to get off a few other post op meds. So things are moving in the right direction.

Her surgeon, Dr. Bove, was just by to check in on her again. He thinks she is doing well for being on the younger side for having her Hemi surgery and thinks her "Hemi headache" (which is caused because of increased blood flow to the head after the surgery) looks good and better than he expected. It is pretty mild, I guess, compared to what it could be. I don't think it looks very mild but she isn't in pain, which is good.

Hopefully Audra continues along here today without issue. Thank you for your continued support!

Thrombosis

It looks like Audra has developed thrombosis in the main artery in her leg - meaning there is a clot. It is likely because there was a bend in the line that was placed there for surgery. The good news is that it is in an artery and we have caught it early.

Breaking news (edited while posting): The head surgeon from the vascular team just came by to evaluate Audra and decided not to do a catheterization to remove the clot because it would do more harm than good. She is starting blood thinner and the other arteries are supporting blood flow to her leg.

Please keep Audra in your thoughts and prayers as always.

P.S. My husband bugged me a million times about posting this post to keep me busy...

Progressing Along Slowly

Audra is on the slow road to recovery. She is generally doing well. She has had some issues with her breathing. Overall, nothing major but just some bumps along the way. This is to be expected especially since she is on the young side to get her Hemi Fontan. It looks like she will be on the ventilator until tomorrow.

Audra started getting fed through her feeding tube again just a bit ago. Hopefully she does well with that. As we know, feeding is always a difficult issue. Since she doesn't drink all the milk I produce, we have found out about a milk donation program. We already had to buy an extra freezer at home and we really didn't want to come home with another large amount of milk. This way we can give back in a small way. Just in case you are interested, I do have to get a blood test (and cannot get it at UofM) to check for infectious diseases and the milk will be pasteurized.

We will keep you updated. Thanks for checking in!

Resting Time

Audra is resting now after a long day. Her oxygen saturation levels (and all other levels) are right where we expect them to be. She is breathing some on her own and she still has the ventilator in, which is standard. They are looking to get her off the ventilator tomorrow, which is also pretty routine.

We have a room at the Ronald McDonald House here in the hospital. It is literally steps from Audra since only one of us can stay with her while she is in intensive care.

What a day! It is still hard to believe that we are back here and already in recovery. We are very thankful for all the blessings that we have and for the support of all of you. We know that those prayers have been helping Audra :) Thank you!

Out of Surgery

Audra is out of surgery and doing well. We spoke with Dr. Bove and he said Audra did really well. She came off the bypass machine and her chest is closed. She is getting settled in at the bay in the PCTU and we will be able to go back to see her soon.

Dr. Bove told us this wasn't his first rodeo and that he thought Audra would do just fine, with the typical disclaimer that of course, you never know. He said that it was a pretty routine surgery and we are glad not to be the most interesting case.

Thank you for all your support, thoughts and prayers!

Surgery Update

Audra is on schedule and doing well. We expect her surgery to last at least another hour. Her surgery started a bit late since she was second case. So we had to keep her calm for an extra 45 minutes when she was super hungry :( That is one of the reasons you don't want to be second case.

We did get to meet with the surgeon, Dr. Bove, this morning. I cannot say enough good things about him. He has a very calming demeanor about him, which is appreciated when your baby is about to have her second open heart surgery. We discussed that Audra may have to be in the hospital a bit longer because of her young age but that is even TBD. But overall he says she looks great for the surgery and is cuter than before if that is possible ;)

Thanks for all the support. Please keep those thoughts and prayers coming :)

Surgery Tomorrow

We are getting ready to head over to Ann Arbor tomorrow for Audra's surgery tomorrow.  Audra is second case, so we don't have to arrive until 8:30.  The nurse practitioner said that the surgery before us was "simple" so it would go quickly.  I guess a 2 hour surgery is simple compared to a 4-5 hour surgery but it is still surgery and we have to wait for them to be done before Audra gets to go in.

Since the surgery has been scheduled so last minute, we have not had the chance to talk to Dr. Bove.  We sent him an email and he said that he will meet with us to talk a few things over before Audra's surgery.  It is not as if we have questions as to whether we should be doing the surgery.  But it will be good to speak with him because we have some questions.

Generally after the second surgery the babies stay in the hospital about a week after surgery so that is our hope.  Of course, you never know how long your stay may be.

Please keep Audra and her surgical team in your thoughts and prayers!  She is such a strong little girl and we love her so much.  We will keep you updated.

On the Way Home

Audra did well in recovery and we are in our way back home. It is a weird feeling to be leaving and know we will be back here Monday. But everything looks good for Monday and we are looking forward to meeting with our surgeon, Dr. Bove.

We ran into the fellow who did our prenatal echos. It was great to see him and talk things over with him. It is always nice to see a familiar face who knows about your history.

Here is hoping for an uneventful rest of the week and weekend.

Cath Over

Audra's catheterization is done and everything looks good. She did well and things progressed quickly. There isn't anything that would prevent us from moving forward with her surgery on Monday. She is in recovery now and we are waiting to see her. We have to see how her recovery goes to find our if we get to go home or if we have to stay until surgery.

Cath

We are in our way to Audra's catheterization right now. All went well with her pre-op day yesterday.

Thanks for all the support! We appreciate it. Keep those positive thoughts and prayers coming :) We will update later today.

More Details

So today is not ending quite as we expected. The day started off with us all trying to get into a new routine. The morning was tough on me but our older daughter was still sleeping when I left for work and Audra was snuggling with our awesome nanny. I am sure it was tougher on me than them.

My husband took his lunch to come home for our appointment with our home care nurse. Audra's oxygen saturation levels were lower again. Our nurse called our cardiologist who then called me. She let me know that our surgeon wanted to schedule Audra's surgery for next week and the scheduling people would call. Got all that? Anyway, our cardiologist also wanted us to bring in Audra at noon on Tuesday. Okay, we can make it happen.

Then I get a call from our surgeon's assistant. She tells us that Dr. Bove wants our surgery on Monday! Just a week away. Even more of a shock is the fact that our pre-op day is tomorrow (I guess today since it is after midnight) and then she will have a catheterization on Wednesday. She should be able to come home both nights but there is a chance she might have to stay on Wednesday. The estimate for her hospital stay is a week after surgery. We are hoping and praying for this.

What a whirlwind! The good news is that my boss has been awesome about all of this. He told me today he had a nightmare that I quit and he doesn't want that to happen. So that is good news because he allows us a lot of flexibility and doesn't want me to worry about work issues while I am off - and boy there are a lot of issues.

Grandma and Grandpa are making their travel arrangements and we are do happy for that!

All of your thoughts and prayers are appreciated!!

New Dates

Audra is scheduled for surgery next Monday - June 18. She has pre-op TOMORROW! Her catheterization is Wednesday. Yes, today was my first day back and probably my last for a few weeks.

More details later...

No New Date... Yet

We talked to our cardiologist this evening. She hasn't heard back from our surgeon, Dr. Bove. She assured us that she will call us on Monday to update us. We are still looking at moving up the date.

Audra's oxygen saturation levels were okay with our home care nurse. Not as high as they have been but higher than they were at our cardio appointment on Wednesday. We will keep an eye on the levels and our home care nurse is now back to coming out twice a week and of course, have to keep our eyes on how blue she is looking.

I start back to work on Monday. It may not be for long but my 12 weeks are up. Fortunately, I will be able to take some more time off for the second surgery, whenever it may be. Not knowing is hard. We will update you all when we know more.

New Surgery Date?

Hold the presses - we may have to move up Audra's surgery date. There is no reason to be alarmed but Audra's oxygen saturation levels are trending lower, so our cardiologist did an echo on her. She was supposed to be able to get away without one today. But alas we needed to take a look inside. Since she is a big baby, as noted in our post yesterday, she is outgrowing her shunt that was put in during her first surgery. This happens eventually to all HLHS babies, some sooner than others.

Based on her numbers and her echo, our cardiologist doesn't think that our surgery date will stay August 8. She estimated that we may have surgery in 2-4 weeks but it all depends on our surgeon, Dr. Bove. We will have an extra appointment with our home care nurse tomorrow and then we will talk with our cardiologist on Friday once she has spoken to Dr. Bove.

So we should know on Friday if we are going to move the surgery and when we might move it to. This is obviously a big change, so we will see what happens. Never a dull moment around here :)

Big Baby

Today is a day we have been waiting a long while for as Audra officially weighs more now than I did when I was born. She is a big baby weighing in at 10 lbs, 8 oz today. Her oxygen saturation levels and blood pressures were all in the normal ranges and everything sounded good.

We are off to the speech and feeding pathologist in a bit and tomorrow we have appointments with our cardiologist and GI. Never a dull moment. Audra is calling :)

Weight gain :)

So we are trying not to get too excited but Audra had another great weight gain! She is almost up 2 lbs from her discharge weight. It makes having the feeding tube easier to stomach (pun intended) because she is doing so well with her weight. As the weight comes, so does strength and hopefully she will be able to take her full bottle.

Audra's blood pressure and oxygen saturation levels looked good even though she hated having her blood pressure taken on her arm. We can usually calm her down pretty quickly but when that blood pressure cuff goes on her arm, she freaks out and only taking it off helps. Poor girl.

We are looking forward to some days of no appointments! Hooray! We are also sort of just waiting for something (bad) to happen. It sounds so awful to say but since things are really settling down and going well, we worry. Well, we have decided to (try) not worry so much about her weight since she is having such great weight gains. We shall see about that.

I go back to work in just two weeks. That gives me more than enough to worry about despite having the best possible care for our daughters arranged.

Feeding Eval

So this morning we had our evaluation with a speech and feeding pathologist. Audra spit up in her car seat before we even got out the door so we weren't off to a good start. Then I may have panicked a bit when we got to the waiting room that opened to the medical center lobby and had kids running all around. I asked for a private room to keep her from the germs. It seemed that I was the first person to ever do this by their reaction but they quickly found a room for me. Then I found that I brought the second copy of the paperwork that I didn't fill out, rather than the completed first copy. Ugh. And to top it off, our therapist said she only had an hour for our two hour appointment. Not a good start.

But we overcame these issues and went through Audra's history. Then Audra had to eat. It was past time for her to eat but she wasn't really into it. Ugh. Not a very good evaluation but the therapist was able to spend longer than just the hour she stated she had.

We went go over some things we can do with Audra to try to help her improve her feeds. The therapist thinks that Audra tires out before she can finish her bottle and that she should be gaining strength. So we have to try the tips she gave us and will go back in two weeks. While it stinks to have a feeding tube, at least we do not have to fight with her to get the nutrition she needs. Also, we need to follow-up with our GI because the therapist wasn't sure we needed the swallow study and we do not want to have to do extra procedures if we do not have to.

Tomorrow we only have our home care nurse coming, which will be so nice after all these other appointments. But we have to get Audra's blood pressure, which is already increasing my blood pressure :( We just hope all of her numbers come back in the right ranges and that we continue to have a weight gain.

All the best!

August 8th

We are scheduled for Audra's second surgery on August 8th. I am so excited and scared at the same time.

This morning when we were at our pediatrician's office with the nurse, my phone rang. Of course, I could not answer it but it was UofM calling to schedule our surgery and pre-op work. As soon as the nurse left the room, I checked my voicemail, having seen that it was the general UofM phone number. I quickly called back, while waiting for our doctor. I had more than enough time to call back and get all the details. And I even had enough time to call my husband and mom to share the news. I probably could have made a post too with the extra time we had waiting but Audra wanted a little more attention :)

We are getting some pre-op work done on August 1st and a catheterization on August 2nd. These are all outpatient procedures and we will drive back and forth these days. Then the next big surgery is August 8th. We had wanted to do the catheterization the day before surgery but Dr. Bove requested it a week before, and of course, we will do what he prefers. It seems so surreal to have our next date for surgery. It is 12 weeks away but will be here before we know it.

In other good news, Audra had another good weight gain. She is maintaining her growth curve and is staying on the charts which are pretty big accomplishments for a heart baby. We are so proud of her. She has worked really hard to get to this point. She did okay with her shots. She stayed mad at me for a bit but then fell asleep on the way home. She did well the rest of the day too.

Tomorrow we have a feeding evaluation. Hopefully we will be able to time her feeding so she will eat at the appointment. We are still waiting to schedule the swallow study.

Thanks for checking in!!!

FAQs

So we have gotten some more recent FAQs that we want to pass along answers to. Again, if you see a question you asked here, don't feel bad. We just want to share the info :)

Q: When will I get to meet Audra?
A: Not for a while still. If Audra gets sick, even just a small cold, we have to take her to the emergency room. Once she has her second surgery, she may be able to meet some more family and friends but even then she won't be going out too much. Thanks for understanding.

Q:

More Evaluations

So we had our appointment with our GI today. The short of it is that she wants to have Audra work with a few specialists on her feeding before we get a g tube put into her stomach. Also, we adjusted her reflux medicine, which already seems to be helping.

The long of it is that we are scheduling an appointment for a swallow study that will evaluate and show how she is swallowing to make sure there are not some issues there. We also have an appointment with a speech and feeding pathologist - she called on her day off after our GI called her about Audra. That makes me happy. She will do an evaluation and then we will work with her going forward for therapy. Hopefully this is more fruitful than with the home care OT. Our GI says that she has had good luck with her cardiac patients, so we are hopeful. The GI wants to give Audra until at least her next surgery (which we are waiting to hear the date) to try to improve her feeding. Depending on how she is doing then, we may consider the g tube that is put directly into her stomach. It is going to take some hard work but hopefully we can get Audra to drink the calories she needs (that continue to increase) through the bottle.

So we have more appointments and more evaluations ahead of us but we feel that we are on the right track. The good news is that Audra is doing well and gaining weight so we are a bit more flexible with our options.

Time to get some things done while both girls sleep :) or not... Baby is awake before I can even put her down.

Two Months Old!

Audra is two months old! She is such a strong little girl and we are so proud of her. She has been through more in her time here than most. And she still has a long way to go.

We are excited to meet with the GI tomorrow to deal with the feeding issues. Audra continues to struggle with her feedings, taking only about half of what she needs. Also, her reflux is still an issue that we need to deal with. The good news is that she still had a small weight gain.

Also, we go to Audra's ped on Tuesday for her two month appointment. She will get immunizations, which is of course good and bad for the many obvious reasons.

Time is flying and we are still waiting to hear from UofM about the next surgery. We will keep you posted. Thank you do very much for taking the time to read this. It really helps when we talk to people that we do not have to go through the general ideas. So thank you :)

Holding Pattern

This week we are in a holding pattern until we meet with the GI next week. Audra had a small weight gain today, which is good after her two big weight gains last week. She is on the right track.

Our nurse says that it is still premature to think of giving Audra a G tube at this point and when we meet with the GI we can tell her our preference to avoid another surgery.

So this week we are just continuing to do what we have been doing and try to get her to take more from the bottle. She takes about half of what she needs. After that she refuses to eat more. When we continue to put the bottle in her mouth, she lets the milk run out and sometimes makes herself gag and get upset. Obviously not what we want. She is due to eat now and is passed out in her nap nanny. If only she would just wake up to eat here and then go right back to sleep in her nap nanny... We can dream right ;)

Happy Mothers Day!

All is well here. Audra seems to be taking more on average with her bottle. She has been spitting up some but not enough to be concerned. Just enough to make us worry.

Happy Mothers Day to all the Moms out there - especially our Moms, now mostly known as Grandma and Oma! Having babies of our own really makes us appreciate how much you have done for us! Thank you and we love you! I think you cannot fully appreciate how much your patents do for you and care for you until you have little ones of your own.

We had a great time celebrating our older daughter's birthday yesterday! A great time was had by all :) Thanks to everyone who made it out and we missed those who couldn't be there with us!

All the best!

Happy Birthday & Update

Two years ago we were at the hospital about to deliver our first daughter. Oh how things change in two years :) We cannot believe how big our oldest daughter has gotten. We are very excited to celebrate her birthday (after getting some sleep hopefully). She is such a great daughter and sister - she wouldn't be a big sister if she wasn't so wonderful :) We are very blessed!

Today we had our cardiologist appointment for Audra. The good news is that everything looks good, and our cardiologist actually said "great". She said that everything looks best case for HLHS and made me cry in a good way. Audra even gained another ounce! Dr. C is calling over to UofM to schedule our next surgery in the end of July or August. We should receive a call in the next two weeks. I cannot believe that we are already talking about surgery number two! Of course, just because we schedule it doesn't mean the date won't change. But it would be nice to have a date to try to plan for.

And for the not so good news - Dr. C was not happy that Audra still has her feeding tube. She says that we cannot leave it in indefinitely. She mentioned that we may have to consider a g tube, which is a tube that is inserted directly into the stomach by another surgery. It would require another hospital stay. Now at this point it is still just a possibility. We are going to meet with a GI doc in a week from Monday to see if we can help Audra before having to go the g tube route. You gotta do what you gotta do but it sure would be great if we can figure this out!

In response to this threat, my husband got Audra to take an entire bottle!!! This was her FIRST time finishing a bottle. Of course, she followed up this performance with only taking one third of her bottle. Ugh. She does not like to eat when she is tired. Speaking of tired... I am the only one awake... Too excited about celebrating :)

Great Gain

Sometimes, I worry about my posts. Like today for instance. The title of the post is "Great Gain", which describes today. Audra had an awesome weight gain and is now 9 lbs! Yay! We are so happy!! But I do worry that I may jinx our progress. I have often felt like this but we post anyway. This is really in God's hands and not dependent on whether we make a blog posting or not. It is just in our nature to worry about things like this.

Anyway, tomorrow morning is our cardiologist appointment. Hoping and praying for an easy visit and good outcomes!

Just Another Update

As I type this, Audra is sleeping in my right hand and our older daughter is off on a play date. Things are settling into our normal. I am happy to report that there is nothing really to report :)

Audra had another great weight gain on Monday and tomorrow we will hope the trend continues! Then we have an appointment with our cardiologist on Friday. I am excited to make sure that everything on the inside looks as good as everything on the outside. At the same time, it is scary because sometimes everything from the outside can appear to be fine and there may be issues. Also, we MAY discuss when her next surgery should be. The current target is 4-6 months, which would be July-September. The surgery schedule is often fuller in the summer because of children having their elective surgeries. And also, we learned that the new fellows start in July. So perhaps September isn't so bad ;) Please keep Audra in your prayers :)

Quiet Morning

Today has gotten off to a quiet start. Everyone is still sleeping. Audra slept in her nap nanny sleeper (a big piece of foam carved out for a comfy place to sleep) for a lot of the night. My husband spoiled me and didn't wake me up for her middle of the night feeding (one of the benefits of pumping and bottle feeding). Yes, he is the best ever! I love him very much!!!

On this quiet morning, I found an article that is about an 18 year old HLHS survivor that is interesting and inspiring. I love that he wants to be a pediatric cardiologist. I have often wondered if our daughters will be inspired to go in this direction. How awesome would it be for kids to have a doctor or nurse with the same rare heart condition?!? Anyway, his course of treatment has been much different than Audra's. He was six weeks old - Audra's age - when they first found his condition. It is amazing that he survived that long without any intervention! He is strong! And they travel to UofM for care. I would guess that Dr. Bove is his surgeon. Here is the link (you have to copy and paste as I cannot make it clickable in my mobile app):

http://www.postcrescent.com/article/20120505/APC020509/305050141/Menasha-s-Rhode-overcomes-seven-heart-surgeries

Have a good one!

Gaining Again!

After three straight weigh-ins (a week and a half) at the exact same weight (ugh) we have a weight gain! Yay! It feels like we may finally have this eating thing figured out for the moment. It is a relief and we hope that this gain continues! Our nurse told me not to weigh her this weekend to keep the pressure off. We shall see about that ;)

Audra is doing much better with a bottle as we have stepped up our efforts to give her a bottle on a regular schedule. We are hoping that she will be able to take the entire amount she needs to get per feed from the bottle. Then we could get rid of her feeding tube for good - hopefully sooner rather than later. Audra likes to pull out her feeding tube. She is so quick! She has done it twice now and putting it back in is routine. We just have to remind ourselves that this is only short term.

Today the family enjoyed the weather (before the storm) and went for a nice walk. Audra enjoyed the fresh air and our older daughter enjoyed picking up sticks as usual :)

And we still have to say thank you for your continued support. We cannot say enough how much your kind words and actions help!

Ups and Downs

We still feel like we are on a roller coaster at times. Sometimes we feel so great that Audra is doing well - her heart and lungs sound great, her heart rate, blood pressure, oxygen saturation levels are all doing well. And then there are the other times - when she throws up nearly her entire feeding and/or screams her head off at us for no discernible reason. Of course, some babies do this but since we are counting every ounce she eats and constantly looking at the scale, it feels like we are doing something wrong. Fortunately, we seem to be dealing with both of these issues but it is a constant struggle.

We have introduced a waiting period between her nursing/bottle session and her tube feed, which has so far cut down on the throw-ups and also made her less fussy. But as my husband says - I don't want to call it. Hopefully the scale shows a gain tomorrow when our nurse is here and the positive experiences continue.

The other issue is sleep, of course. We have yet to find a place she likes to sleep for very long that doesn't involve our arms. We have tried her bassinet, bouncer, swing, and rock-n-play sleeper. The nap nanny arrives tomorrow and we are hoping this does the trick. My bff also has a sleeper that looks promising. Hopefully we can find something she likes. One thing is obvious, I did not sit still enough during this pregnancy ;)

So overall, we are doing well. Our older daughter had a great swim lesson with Papa today and is looking forward to celebrating her birthday in a couple of weeks. It seems like she was just born! But then again, I think my mom says that about me :)

Home so long?!?

We have already been home three weeks as of yesterday. Wow! Time does fly!

We are still struggling with feeds for Audra. She had three weight gains in a row and today she was the same weight as a week ago. Ugh! Our nurse talked to our ped and we don't have to supplement her milk yet but this is the next logical step.

On a positive note, Audra did go to town on one of her bottle feedings today (no thanks to her OT who has not done anything but observe). Audra still has to about double what she did today but hey, you have to celebrate the small victories right?!? She continues to do well with nursing but does not get enough before tuckering out. The hope is that as she gains weight, she will get stronger and be able to nurse longer. Frankly, at this point, we do not care how she gets the calories, as long as she is doing well. It feels like a constant battle and every time she cries, I see her calorie count start ticking down. Well the good news is that she started at 8 lbs, 5 oz and not 5 lbs. Always look on the bright side of life :)

As always, thank you for your continued support!

One Month Old Today!

Audra is one month old today! We cannot believe how quickly time has passed on one hand, and on the other hand, it has felt like a really long time because so much has happened (and we have seen so many hours of the night that we used to only see in undergrad, lol). She is also 4 weeks post op!!! Wow!

Today, we celebrated Audra being one month old by going to the pediatrician for a check-up of her reflux. She is doing really well and our (new, non-retiring) primary dr. was very happy to see Audra's weight gain finally! We are so happy that she is finally gaining weight on a consistent basis. What a relief!?!

The occupational therapist came to evaluate Audra yesterday and was at a loss to help us - awesome (with sarcasm). She said that there is no reason Audra could not take a bottle if she is nursing and had nothing to offer to help. So it appears she is doing that breast fed baby thing and refusing to take a bottle - but even before she started nursing. Hopefully we can get over this and get her to take in enough milk nursing do we can get rid of her feeding tube. She is starting to seem annoyed with her feeding tube, which is understandable.

Until next time... Remember no news us good news :)

Best in 30 Years!

We had a good visit from our home care nurse as Audra finally started to gain some weight. It seems that we have not been giving her enough milk. Now that she is nursing some, she gained weight! Hooray! This is such a huge relief and hopefully a trend that continues along with her good nursings.

Audra absolutely HATES to get her blood pressure taken. Our nurse has to talk with our cardiologist because of the stress that this puts on Audra and the abnormally high readings these cry-fest readings produce. Hopefully this improves.

At the end of our visit from our home care nurse, she was singing our praises. She said how well Audra was doing and even said she is the "best baby with this condition that she has seen in her 30 years as a nurse." And no, I didn't ask how many other HLHS babies she has cared for. We will take the compliment and run with it :)

Also, for those of you playing along at home, our neighbors are still not back in their house after 8 months of construction that was supposed to be done in December. I predicted that Audra would be home with us before they made it back and fortunately, I was correct. Now if this stupid construction would just be done, I could stop complying about it ;)

Finally for today, thank you for all the continued support. We cannot say often enough how fortunate and blessed we have been and continue to be and you all are a huge reason for this! So thank you from the bottom of our hearts!!

At Home, Doing Well

Life at home has had its ups and downs but overall it is going well. We are getting into a routine and both Audra and our older daughter are adjusting well. No news is good news.

We dealt with Audra's reflux this week and she seems to be doing better with that. She has still been struggling with both gaining weight (she takes after my eat anything husband i guess) and bottle feeding. But today she has been a nursing champ! We have randomly been trying to have her nurse with just a little success. But today for two times in a row she had really gotten the hang of it. She must know that we have occupational therapy coming next week to help with her bottle feedings ;) Anyway, we hope she continues to nurse well before each feeding and the gain some weight so we can get her feeding tube out.

We are also happy to report that our HLHS buddy over at UofM, Wyatt, had his first surgery on Friday and is doing well! It was hard on Thursday night and Friday to think about what they are going through. Just three short weeks ago we were right there. We are so happy for their family and baby Wyatt!

Our Local Cardiologist

Yesterday was Audra's first visit with our local cardiologist. Her office is literally 5 minutes from our house and our surgeon, Dr. Bove, recommended her. At times, Audra was not happy but overall the appointment went well. It did take much longer than we anticipated, which worried my sister who was watching our older daughter.

After getting weighed and measured was the echo. Audra liked looking at the fish that were on the ceiling. She got herself really worked up but when we gut her partially swaddled, we were able to calm her down. Up next was her EKG, which went pretty well.

When the Dr. C came in, Audra gave her a nice full diaper - a nice welcoming gift :) Dr. C says that Audra looks how they want a Norwood Baby to look. The Norwood is the name of the surgery she had. Her levels are all in the proper ranges and our home care nurse is going to continue to monitor them for us until our next appointment. She even cut down on her medicines!

We are still working on the bottle feedings. Audra is making progress but still likes a full belly to magically happen rather than work for it.

Thank you for your continued support and prayers! We appreciate the meals that you are bringing by!! Thank you so very much!!!

Home Sweet Home

It is really nice to be home. Audra likes having less people mess with her and still prefers to be swaddled up. She has reasonable amounts of "quiet awake time" during the day as mama refers to them as where she loves to be carried around the house and look around. We are still working on bottle feedings. Audra prefers to sleep rather than eat and with her feeding tube, she can do both ;)

Our first night home was a little rough. Audra was fussy and didn't want to sleep. She woke up her older sister who joined in the sympathy crying. This was to be expected. But now when Audra cries at night, our older daughter can sleep through. It is the small victories :) Our older daughter loves to give Audra her snuggle blanket and paci. It is very cute. She is a great big sister and has really been adjusting to this all very well.

Yesterday we had our first visit from our home care nurse. She was very helpful and will be coming twice a week for the next few weeks. We also had our first pediatrician appointment. It went well but we found out our main pediatrician is retiring at the end if the month. We will start to see another pediatrician from the group whom we like. Monday we will see our cardiologist.

On another note, a newly found friend who is an HLHS mom to be is in labor over at Mott. Please say a special prayer for her family as they start on their path!

Happy Easter! All the best!

On the Road Home!

We are on our way home literally! Audra is sleeping in her car seat and our car is packed up with everything we have accumulated over the past two weeks. It feels good to be out of the hospital in the fresh air!

We are looking forward to getting to our new normal at home. Audra is going to enjoy having less people checking her around the clock. She has done really well as everyone has told us. "This is how a Norwood is supposed to go" all the doctors say :) This makes us very happy but we still have a lot ahead of us. We are still working on her bottle feedings. Slowly but surely.

Thanks for all the support and prayers. We have been very blessed! My sister is coordinating dinners for us, so if you are interested in bringing by dinner, either check my Facebook page or email her at jherta at gmail.com.

We are so proud of Audra and our older daughter for doing so well these past few weeks and looking forward to being together as a family!

Going Home Wednesday!?!

It looks like we are going to be discharged on Wednesday. Yes! This Wednesday! Audra's feedings have been going well. She had had some spit-ups, like a baby does, which of course makes us worry. But the nurses and docs aren't concerned, which is important.

Today was spent getting us ready to go home. It was frankly a bit overwhelming. We had both a hearing test and an EKG that came at the same time. The hearing test was much more difficult than I remember our older daughter's being. Audra had to be asleep after having some electrodes placed behind her ears. We got her back to sleep but then some of her wires caused interference. So after an hour of effort, we have to do it again tomorrow. Boo.

Another appointment we had today was with the occupational therapist to get some help with the bottle feedings. The first session was not very successful. The second session went better but we still have a long way to go. We can only let Audra try the bottle for 20 minutes because we do not want her to burn more calories than she is taking in. After that she gets her milk from the feeding tube. Hopefully she progresses quickly to taking all of the milk from the bottle so we can skip the feeding tube.

We made appointments with our pediatrician and cardiologist back home for the end of this week and next week. Audra also had to get her RSV shot even though it is the end of the season. Better safe than sorry. We also worked in giving Audra her meds and feedings ourselves today. It seems difficult but really isn't that hard.

Tomorrow is another big day. Audra will get her iv out and be taken off the monitors. Also, we will have a car seat test where they will monitor Audra for an hour on her car seat. And don't forget we have to repeat the hearing test.

We cannot believe how well Audra is doing and we are not taking this for granted. It is very important that she stays healthy until her next surgery, which will be sometime between July and September. We won't be taking Audra out much and we will have very few visitors. We need to do what is best for Audra!

Until next time!

Progress Again

So we are back on the road of progress. Audra started her feedings again and is tolerating them much better. It turns out her feeding tube was 4 cm too deep. That makes a huge difference for someone so small.

We are still looking at a discharge of either Tuesday or Wednesday, if all goes well. This is so much earlier than anticipated! We were told 2-3 weeks after her surgery if all goes well and we may be out two days short of that two week mark. Needless to say we feel very blessed that so many things have gone our way and that Audra is such a little fighter :)

We also may not have to supplement the milk Audra receives because of the calorie content. They "spun" the milk and determined that it is 27 calories per oz, where the typical milk is only 20. We shall see how things progress.

We really appreciate all the support and prayers we have been receiving. It makes a huge difference. Thank you for all the cards, texts, emails, phone calls, and extra special things that have been sent to us. All are highly appreciated and we are very thankful.

Roller Coaster

Today has been a roller coaster. We found out that we looking at going home on Tuesday. This is very exciting and scary at the same time. Obviously, this was an up part of the day.

We are currently recovering from the low part of the day that lasted since around noon. Audra was getting milk every three hours and started to get really fussy. We are not talking about a little fussy. We are talking about holding her breath, turning blue fussy. And this came out if no where for us because she had been doing so well overall and with the smaller feedings.

No one had an answer. So finally they did an X-ray on her stomach. It turns out that her feeding tube was placed too deep - past her stomach - and her system couldn't handle the larger feedings. She has a bunch of air in her system that she needs to clear out.

So Audra is going to be taking a pause on her feedings tonight and starting over in the morning. We are very thankful that we were able to identify a cause to her problems and now fix them. We were very scared that the X-ray would show nothing and we would be left scratching our heads as to the problem.

In the scheme of things, this is only a minor setback. We feel blessed that this has been our roughest day because we just have to look around to realize that things could be much worse.

Thank you to everyone for your support and prayers!

We Are in General Care

Today has been a very big day! At first we were told we had a bed in moderate care and then they moved us directly to the general care floor. This is a big step and we are excited & scared both at the same time. And unexpectedly, the cardiologist even mentioned that we might be looking at going home next week! Next week!?!? We cannot believe how blessed we have been and Audra is so strong and tough! We still have a long way to go but things are looking good for now.

The echo that was supposed to be this morning was delayed to this afternoon. But the results were good. Everything looks as expected :) Great news!

Now we are working towards going home - according to the team here. It is a change in mentality from intensive care where the mentality is get you well enough to go to general care. Audra is still building up her feedings and will be able to start drinking some of her milk. She has been pretty active with her paci so we are hoping that she will be nice and strong. One of the perks of the general care floor is that both parents can stay in the room. The nurses also promptly dressed Audra in one of her outfits :)

We also talked to the cardiologist about Audra's next surgery. It is likely to be in August. It is crazy to even try to think that far out since we have just been taking it day by day. Our cardiologist at home will be in charge of determining when Audra is ready.

Our older daughter had a blast with us today and was even happy to give Audra her paci :) What a great big sister!

Progress

Today Audra made a lot of good progress! She got her chest tube out. She is off her breathing tube (the kind grandmas and grandpas sometimes have) and breathing normal air. Her feedings with her feeding tube are increasing in amount and we are looking towards moving from a continuous feed to larger amounts of milk spaced apart. This is the next step towards oral feedings :) So far, so good for Baby Audra!

On a down note, we are getting kicked out of the In-house Ronald McDonald House and there is no room across the street at the real House. The In-house is supposed to only be short term and the real House across the street is for longer stays. We have not made it off the wait list in a week. So we have decided that I will stay in the room with Audra and my husband will travel back home. He is going back to work next week so this will be a good transition, I guess. If this doesn't work out we will get a hotel close by. We shall see.

We are looking forward to Audra's echo in the morning in a nervous way. Please continue to keep her in your thoughts and prayers. She is so strong and courageous!

Fussy Night

So Audra had a fussy night last night but nothing major happened. She had her first blow-out diaper. Her dressing came off her chest and there is a bit of puss in two spots. But they do not think it is infected, which is good news. We will keep our eye on it. As if there isn't something we are keeping our eye on. Overall she is still going really well.

Today Audra will get her chest tube out. The chest tube allows for drainage from her chest. There is very little to drain now so we are ready to take it out. Another step in the right direction but we have to keep a close eye on her (as always, right).

We have the orders in to move to moderate care but there are only 6 beds in moderate care and there are 2 kids ahead of us to move. So they said we will stay here and what usually happens is that by the time a bed opens up, we will be ready to move to the general care floor for cardiology. We shall see but for now we are staying put.

Also one of the nurses told us about Rockabye Baby, which are albums of rock music made into lullabies. How did we not know about this before?!? So Audra (and Mama and Papa too) have been rocking out lullaby style :) And we even had a gift card from our Aunt to buy them with. Check it out on iTunes if you haven't heard them.

Another Good Day

We had another uneventful day, which is always great. Dr. Bove stopped by and said that Audra is a "star" and "very strong"!! We told him that her name means noble strength and he said it is fitting :)

Audra has tolerated her feedings well and is up to 5 mL per hour. She is getting weened off most of her iv meds and is taking a few meds in her feeding tube now instead.

Audra had an echo this morning. Her heart function looks as expected, which is good. We will have a repeat echo on Thursday to make sure everything still looks good. Clinically, she is doing very well as all of her numbers are right in target.

We are still looking at moving to moderate care tomorrow. This is exciting but scary! We have had one nurse for Audra this entire time and in moderate care, it is 4 patients per nurse. This will be a big change but she shouldn't need as much direct attention. Thus, the moderate care. But it is still scary nonetheless.

Her chest dressings will get removed tonight at bath time. We are looking forward to that although not to hearing Audra cry as the nurse removes the sticky portion of the bandage :( Sorry baby!

We enjoyed some nice family time today! Thank you to everyone for your continued support and prayers!