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Saturday, March 31, 2012

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.

Friday, March 30, 2012

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!

Thursday, March 29, 2012

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!

Wednesday, March 28, 2012

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.

Tuesday, March 27, 2012

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!

First Feeding

Audra had her first feeding late last night! This is an important step because parts of her digestive system can lose functionality if she is not digesting the food right. We learned how to place the feeding tube, which Audra did not like - sorry baby! But once the tube was in place and the breast milk was delivered, she was doing fine.

We are looking forward to seeing her chest today as her dressings come off! They didn't have to use any stitches in the very top layer if her chest, so the scar should heal very nicely. They will use the same scar for her future surgeries as well so how it looks now really doesn't matter. But they said she has good skin that heals well :)

Monday, March 26, 2012

Out of the Bay

It is so quiet in our private room! We are just getting settled into the same room that we had pre-op, which is still an intensive care room. It is at the end of the hall and such a change from the always hectic Bay. We are all relaxing.

Audra has been doing so well breathing on her own. We had another great repeat nurse today but have someone new to us tonight.

Next up for Audra is feeding! She will get some breast milk tonight via a feeding tube. We will see how she does. But things keep moving forward!

We are looking forward to spending more family time together tomorrow. Big thanks to Grandma, Grandpa and my sister for taking great care of our older daughter and sending us picture updates!

Moving Forward

Our baby is making big steps as things are progressing nicely. Audra has done really well on her sprints so they already took her off the ventilator and she is doing well! Hooray! She is having more awake time again, which is great. They are already looking forward to moving her to moderate care - out the Bay and out of intensive care entirely! But she still has many steps to go before she actually gets there. It won't be for at least 24 hours they say but even that us much faster than anticipated!!

As we said before, we are taking things as they come to us and try not to look too far ahead. Audra us doing really well right now and that is what we focus on rather than getting caught up in what potential set-back might be around the next corner.

Thank you all for your support and prayers! It is all really helping!!

Sunday, March 25, 2012

Chest Closed

The surgery to close up Audra's chest went well. She is doing well now and looking good. So far, so good! We really could not ask for more.

Tonight Audra will do some "sprints" to test to see if she is ready to get rid of her ventilator. Before the surgery today, she was breathing almost all on her own with the ventilator doing very little. Once she is off the ventilator she will slowly start feedings using breast milk, so we are pumped about that ;)

While we were waiting for the surgery we had a great visit with our older daughter. Thanks to Grandma, Grandpa and Aunt for watching her and bringing her over!

Another Big Day

Last night was another uneventful night, which is great! Audra is doing well. Today is another surgery day because she is getting her chest closed! This is another big step.

Usually Sunday is not a surgery day but yesterday an 8 day old baby girl arrived via ambulance (no helicopter because of the weather here) who needs surgery. We met the parents because we allowed them to come over to see Audra so the parents could see how things look after surgery. We have no idea what the little one's heart problem is but it is hard to see others go through the same thing. They are in our thoughts and prayers this morning.

After that baby's surgery, they will work on Audra so please also keep Audra in your thoughts and prayers. It will take about an hour and a half in the early afternoon. Once her chest is closed she can continue moving forward with healing. Obviously we are looking forward to this.

Audra is receiving great care from her nurses here. She has her own nurse assigned for each shift and once you have a nurse, they try to keep the nurse with you. Here at the Bay, we have had the same two nurses all weekend. They both have their own style but are both great. Two of Audra's pre-op nurses have stopped by and I think that one (my sister's fav) may be back with us tonight. Everyone here really does a great job though.

On a lighter note, we found out that we are on Team Blue (rather than Team Maize). This just refers to the Team if medical staff that you are working with who do rounds. As always, Go Blue!

Saturday, March 24, 2012

First Post Op Night

The first night after operation was uneventful! What a relief! Audra is doing well and stable. Her chest is still open, which is standard for the surgery to keep pressure down in the chest. But they have to change the patch that holds it together in a bit. Hopefully this goes well. The doctors think that they will be able to close up her chest tomorrow, which is good news. We are taking things as them come and doing well.

We are looking forward the arrival if our older daughter here shortly for some family bonding time :)

Friday, March 23, 2012

At the Bay

Audra is at the Bay as it is called - an open area of the intensive care unit where the high needs patients go after surgery. Overall she is doing well and looking good. They are working to keep all of her various levels stable, which is pretty typical but can be a bit like a roller coaster ride for us.

They just finished the evening rounds and they did not need to make any major adjustments. We are praying for an uneventful night.

Thank you for all the continued support!

Surgery is over

We just spoke with Dr. Bove and Audra is just coming out of the operating room.  She did really well and he said that everything went as planned.  There were no unexpected complications.  Her shunt is in and functioning well.  All good news.  Of course, the next few weeks are critical to her recovery and she has a long way to go but this is a huge relief.  We will get to see her in about another hour.

As I shook Dr. Bove's hand, I couldn't help but get emotional as his hands have been in my daughter's chest and they are really healing hands.  We are very thankful for Dr. Bove, his team and all the prayers and thoughts from all of you! Please keep the prayers and thoughts coming!! :)

Update

We have updates from the nurse practitioner!  Audra is doing well.  Her surgery moved along pretty much on track but faster than we were expecting, which is great.  It seems that things went as planned.  She is off the by-pass machine and they are working on finishing up.  We are expecting Dr. Bove to come up any time in the next hour to give us a full update!  It will probably be two hours until we can see her back up here in the bay, which is where the high needs patients go after surgery.

Thank you for all the positive thoughts and prayers!  Keep them coming!

BTW, we do not have any cell phone reception in the waiting room here where we have to wait for our updates.

Now Waiting

We we able to hold Audra early this morning for quite a while. We all enjoyed that. They took her down to surgery around 7:15. Now we are just waiting...

Thursday, March 22, 2012

First Case

Audra is the first case tomorrow meaning she will be the first surgery. They will start at 7:30 and expect the surgery to last the entire morning. We will not get our first update until after 10:15. Please keep Audra, Dr. Bove, and the entire medical team in your thoughts and prayers. We will update as we can.

Today we were able to enjoy some family time and celebrate Audra's baptism. Our older daughter came over to visit and everything went well! She liked it when her little sister was sleeping and was all smiles. But when Audra cried, she got very upset and even cried too. Overall, things went well and she understands that Baby Audra is her little sister and she loves her :)

Dr. Bove, Audra's surgeon, stopped by for a short visit. He reassured us that there are no new risks and she is in a good position to do well. It was great to see him even for just this short time.

Wednesday, March 21, 2012

Surgery Friday

Surgery is scheduled for Friday at 7 am. We are excited and nervous for this huge step. Some tests will be run tomorrow in preparation for Friday. So right now we are enjoying our time with the little one.

Audra has a very calm demeanor and is slow to agitate, which is great for any baby and especially a heart baby. Right now she is generally happy if she swaddled up at least a little and has a clean diaper.

We are very excited for her to meet her big sister tomorrow! With our older daughter having a fever earlier this week, we wanted to make sure she was over her illness before meeting her little sister! Grandma and Grandpa will bring her over and we couldn't be more ecstatic!

Tomorrow we will be Audra's baptism. We are looking forward to that and thankful that our pastor will be coming down to UofM for us.

Since I was discharged within 24 hours of Audra's birth, tonight we have a room at the Ronald McDonald House here at the hospital. It is just steps from our daughter's room so we feel fortunate that we were able to secure a room there until at least Saturday. After that, we shall see but hopefully we can stay there longer.

Thanks again for all the love and support!

Tuesday, March 20, 2012

Welcome Audra Jane

Audra Jane was born today at 3:22 pm! She weighs 8 lbs 5 oz - the same birth weight as her big sister and is 20.75 inches long. Her HLHS is confirmed but she has no other issues at this time. She is breathing well on her own and has a strong heartbeat. She is beautiful and looks like her older sister a bit. She does indeed have a lot if hair, which explains all the heartburn!

Hopefully tomorrow we will find out when they will plan her surgery. They will keep a close eye on her to make sure all of levels are okay, which may change the plan as well.

Thank you to everyone for your thoughts, prayers and support. Many of you have expressed that you want to visit but unfortunately we have to limit her visitors to immediate family only - just us, big sis, our parents and sisters. She needs to be exposed to as little germs as possible! Thank you for understanding!

What a great day!

Water broke

We are on the way to Ann Arbor because my water broke this early morning. The roads are clear and the hospital is expecting us.

I think she decided that she was promised an induction date of the 19th to be born on the 20th and wanted to keep it despite what the schedule says. Today is, after all, the anniversary of the day my husband and I met :)

We cannot wait to meet our little one!

Monday, March 19, 2012

We Passed!

Both baby and I passed our NST today. Baby girl was her usual active self and my blood pressure was down! I didn't even have to get blood drawn. I think it was because my Mom was with me :)

While I was at my NST, my husband took our older daughter to the pediatrician. She still had a fever today and was for sure out of it. She has a virus and nothing else, which is good. She has been sleeping and snuggling a lot and we hope that she gets better here quickly and no one else gets sick.

We will be going over to UofM in the evening on Wednesday so hopefully there won't be much news until after then.

We will keep you updated!

Weekend Update

It was a busy weekend at our house with the news that our induction date is moved to Wednesday, the 21st. With the schedule for the surgery, it doesn't make sense to induce me yet unless my high blood pressure requires it or something naturally happens. I will go for a NST sometime in the morning or afternoon and see what happens from there. My blood pressure jumps up every time I walk in one of the hospitals, so we shall see.

In addition, our older daughter came down with a fever after nap today so we spent some serious time snuggling and trying to feel better. She ate and was doing well before bedtime with no other symptoms and a lower temperature. Now we are hoping and praying that the fever breaks overnight and she is back to herself in the morning.

We are happy to have Grandma and Grandpa here!

Until the next update...

Thursday, March 15, 2012

Back Home We Go!

We are on our way back home! My blood pressure came down significantly and they aren't ready to induce me since my body isn't really ready. They will call us on Sunday evening and we will probably be headed back on Monday evening to be induced.

The interesting thing that happened was that we got a hug from our nurse from my aunt and uncle in Florida :) Our nurse's parents know my aunt and uncle and told their daughter to be on the lookout for us - with just my first name and my aunt and uncle's name. It is really a small world! And thanks for the hugs :)

We will keep you posted!

To UofM We Go!

We are driving over to UofM right now (this is my first mobile post). My blood pressure was elevated at my NST this morning. I had the blood work done again and it came back fine. But they wanted to send me to UofM since I have had elevated blood pressure on and off and I am almost 39 weeks.

At first they were going to send me via ambulance. But since it is non-emergency, my husband can just drive me. Once we are at UofM, they will check me out to decide what to do. We shall see!

Big thanks to my bff who is picking up my patents from the airport and to our awesome nanny who is watching our older daughter while we all play it by ear!

We will try to keep you updated!

Tuesday, March 13, 2012

Almost time!

It looks like we have less than one week until our baby girl will arrive!  Time is sure flying and we are busy making preparations.  We are trying to prepare ourselves but preparing for the unknown is hard.  Our older daughter still has no clue what she is in store for but she is looking forward to Grandma and Grandpa arriving later this week.  She enjoys hugging Mama's belly but is far too impatient to feel her sister to move.

My blood pressure has been on the higher side but is still staying under control.  At my last NST (non-stress test) I had to go get my blood work done again since my blood pressure was elevated.  The blood work came back good - meaning I do not have preeclampsia, which is great.  But I have been working from home since then and trying to take it easy.  We have been monitoring my blood pressure to make sure it is not getting too high.  On a positive note, our baby girl has even made it easier on me by moving off my hip so that I am much more comfortable! 

Until next time...

Sunday, March 4, 2012

Our Baby Girl is Full Term

Today our baby girl is considered full term!  This means that her lungs are fully developed and she can be born any time now.  Great news!!!! 

My non-stress test on Friday and ob appointment over at U of M went okay.  Our baby girl was responsive in her typical 20 minutes, which is great.  We were getting ready to get up and head off to my ob appointment and the nurse started up the ultrasound machine because U of M measures the level of amniotic fluid around the baby.  The levels were all really good. 

After the non-stress test, we headed over to the women’s clinic for my ob appointment.  We scheduled an induction date!  As predicted, it is March 19th.  But this isn’t really set in stone.  The ob said that when they call me on the evening of the 18th to tell me when to come in, we can reschedule if I am not having any signs of labor and my body doesn’t appear to be ready.  So maybe March 19th is the go date and maybe it isn’t.  Of course, our baby girl could always decide she wants to make an appearance before then!  We shall see.

We got some more questions answered and the only other thing of note was that my blood pressure was a bit elevated (even measured at the end of the appointment).   They sent me to get blood work to make sure it isn’t preeclampsia, which so far it is not.  It was a stressful week and this weekend we were able to relax.  So hopefully my blood pressure can come back down a bit. 

Stay tuned as the big day approaches!!