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 :)