Nov 17

Audrey had a follow-up visit at the Cardiologist today and she is doing great! At her last follow-up visit she had some fluid in her lungs and had to be put on a diuretic (medicine to make her pee). Her chest x-ray looked better this time so we are able to take her off of the medication. Yay! No more "water-balloon" diapers!

She is also growing like a weed. She gained another 3 1/2lbs in less than a month and is now up to 9lbs 10oz and 21 inches long. With this jump she managed to hop on to the growth chart in the 5th percentile for weight, haha! No wonder people still mistake her for a newborn! Everything looks really good for now, so she doesn't need anymore check-ups until the end of January when she will get another chest x-ray, EKG and echocardiogram (ultrasound picture of the heart).

Audrey has settled into a little routine at home and seems to be getting less fussy by the week. She is smiling a lot now and starting to reach for her toys. She's also exploring her hands in a way that makes me think I'm going to have another little thumb-sucker! Every once in a while I get a little coo from her that makes my day! It is so amazing to watch a baby grow and change from week to week. We are really enjoying each other and Caroline is still very much in love with her baby sister. She likes to run in to check on Audrey in the morning and stand on her tip toes to peek into the bassinet. If she reaches her arm over the top she can touch Audrey's back. Then she loudly exclaims "Audrey move! Audrey wake!". Luckily, Audrey is pretty good about going back to sleep after this affectionate interruption.

I probably won't post anything more on this site, but please feel free to call or email me anytime. I really appreciate all of your concern with everything that Audrey's been through and, of course, I love to brag about my beautiful girls to whomever will listen!

-Linda

23 September - Finally Home

Title says it all! Finally home! Audrey is doing great and her sister and furry brother were thrilled to meet her. More on that later. It's good to be home.

22 September

Audrey's feeding tube came out today! Her pacer wires are out too! That makes NO wires, lines, or IVs left anywhere! We are truly hoping to take her home tomorrow. Here's a picture that I call "the Foussa are coming!"
Much love to all!

21 September

Audrey is finally gaining weight! She weighs in at 5 lbs and 5 oz. She's doing better with the bottle and is nursing well. We are still waiting for the medical staff to see enough progress feeding to release her home. Currently, she's still using the NG tube a little bit, and the doctors want her to take complete feedings on her own before she leaves.
There's not much else to report on really, just eat, sleep, poop, and grow.

19 September

Today was another good day. The last of the IVs was removed, and now, she only has the NG tube and the pacer wires in her body. She is working on eating on her own, and when she can accomplish that, the NG tube will be removed. Right now, she's eating half her food on her own, and the rest is fed to her via the tube. She weighed in at 5 lbs and 4 oz today, which was great! Lastly she is now responsible for regulating her own temp as the heat lamp was turned off. Almost forgot, but she was moved to a "big girl" crib today. Also, apparently Linda endured her screaming "like a banshee" for about an hour today. I say hooray for good lung function!

18 September

Sorry for the missed day, I'm back to work and flying at night.
Audrey is doing well, and it is great to be able to deliver good news everyday. We don't have a time line for when she'll be released, and we don't expect that for a while.
Audrey is now completely off oxygen and her PICC line was removed yesterday. She is still a little uncoordinated with her feedings. Right now, she's eating half her meals, and the other half is being feed to her through the NG tube. Believe it or not, she's meeting with an occupational therapist today to work on her eating.

16 September

More improvements today. Her central line (last tube in her chest) was removed, and she had her stitches taken out of her sternal incision. Additionally, she started eating from a bottle. Linda was even able to hold her for about 45 minutes. She was moved to the "regular" section of the NICU. It definitely feels like Audrey has turned the corner.
We are looking forward to posting even more improvements as they occur.

15 September

Great news! Audrey is off the ventilator! She is staying in the NICU for further observation to check on her lung function. Currently, she has only the nasal cannula to give her an extra whiff of oxygen from time to time. She still has the feeding tube, but that will be removed when the doctors determine that she can swallow safely.

14 September

Audrey is still intubated, but this is only as a means to suction her lungs. She is continuing to cough up old blood and lung secretions. She is breathing only room air and isn't using the vent to pace her breathing.
They removed her Arterial Line in her right foot, so now she only has a transthoracic line in her belly and a PICC line in her left arm, plus the usual mayhem with the vent. Additionally, she is receiving 100% of her nutrition via her nasogastric tube and is off IV nutrition. Plus they have chubbed up her feed with some supplemental high calorie formula. Thanks No-Xplode!
We are hoping each day that she is extubated, but we're content knowing that the suction intubation provides will help her recover.

13 September

Audrey remains on the ventilator today. They are using it as a means to suction her on a regular basis and help her get rid of all the excess "junk" in her lungs. This way, she won't have to work laboriously to cough it up on her own which should help her recovery time. She is breathing mostly on her own and doesn't require any significant amount of oxygen (25% currently). The plan is to leave her on the vent for at least one more day, then hopefully transition directly to a nasal cannula.

12 September

Audrey remains on the ventilator after her bronchoscopy yesterday. This will allow the medical team to suction her lungs without having Audrey struggle through coughing, hopefully decreasing her time on breathing assistance. Her delivered oxygen is at 30%, an all time low, and her oxygen saturation is at 99%, an all time high. These are both very positive signs! She also looked a lot more comfortable today and was awake and looking around when Aunt Emily stopped by for a visit.

11 September

EDIT! 8 pm pacific EDIT!

The treatments overnight did not seem to do the trick, so today Audrey underwent a bronchoscopy to check out her lungs. They removed some old blood and some thick secretions, but they also uncovered some new bleeding during the removal of old blood. The bleeding was very minor but they have her intubated and on the ventilator until at least tomorrow.
We keep telling ourselves that each day is one day closer to her being healthy enough to leave the hospital. We are excited for that day, let me tell you!
In better news, Ryan's sister, Emily arrives tomorrow. It will be good to have an extra hand around the house again.

10 September

Today, Audrey moved to a mask type CPAP to alleviate pressure on her nose from the previous style of CPAP. Additionally, she began a string of steroid medications that are supposed to help her lungs work normally. Let's hope it works so she can make some real progress!

After a week of receiving IV nutrition, Audrey started receiving milk via a tube into her stomach. This is good because the only real way she can grow is by eating food. I'm hoping that food plus steroids equals good lungs!

9 September

No real changes today. Audrey requires a little more oxygen via her CPAP machine than yesterday, and her chest x-ray shows no improvement. She is still receiving a lot of attention from the respiratory therapist and undergoing treatment to help her breathe better every 4 to 5 hours.
We've been able to spend a lot of time with Audrey. Tomorrow, Ryan goes back to work, so it will be Linda only here at the hospital. Ryan will be taking some more time off when Audrey comes home from the hospital.
Any blog updates will be posted when Ryan returns from work, around 6 pm pacific, 9 pm EST.

8 September

More progress today.
The drain lines were removed from her chest, which is a significant improvement to her comfort. Plus she looks a lot better too! She's still on the CPAP, and she looks like she's a scuba diver. For pain control, she's been put on morphine, but this doesn't stop her from opening her eyes and looking around for 30 minutes at a time. This is a big improvement. Before the surgery, she could only stay awake for 5-10 minutes before she got tired and fell asleep.
That's all for now. Next step: get rid of the CPAP.

7 September

A great day today! Audrey came off the ventilator this morning, and she is currently using a CPAP machine to ensure she is taking full, deep breaths. She is now "conscious" and looked around for about 45 minutes this morning with Linda. Once she comes off the CPAP, Audrey will be able to be held and fed orally.
We're looking forward to holding her soon!

6 September

This morning Audrey had her chest closed. She is well on the road to recovery now. Hopefully tomorrow she will be off the ventilator, but it all depends on how well she improves over time. After she is off the vent, her single most important task will be to gain weight! We are looking forward to fattening her up so we can take her home!

5 September

Audrey is doing good today. Her lungs are doing good and she is still on the ventilator. Right now, she is scheduled to have her chest closed tomorrow, which is the next big step forward. We are ready for that! (Her chest was left open to accommodate the swelling.)

We are still taking those little steps forward.

Info on Audrey's Defect

Below is a website from the Cincinnati Children's Hospital that thoroughly explains Transposition of the Great Arteries/Vessels. You can look on the right side of the screen and click on "Flash Movie" and it will open a new window that has a demonstration you can click through.

Click on the link below or copy and paste into your browser.

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

4 September

Audrey is off the oscillatory ventilator and is now on a regular ventilator to keep her breathing. This is a pleasant surprise we did not expect.

According to our Nurse, Audrey is doing very well. It seems her pulmonary hemorrhage is over, so there is no further bleeding into her lungs. Although she still requires a lot of oxygen, her chest x-ray looks about 50% better than yesterday. Because she is so young and small, her lungs will continue to grow and create lung tissue. This will allow Audrey a good chance for complete recovery of lung function.

Audrey is able to move all her arms and legs and open her eyes, which indicates that she tolerated being on the heart and lung bypass machine well.

For now, Audrey is stable and we'll continue to look for small improvements everyday.

3 September

Audrey entered surgery at 1:30 pm. Just after 6 pm we received the first report that her surgery was a success, and the surgeons were finishing up. Unfortunately, during the last 15 min of surgery, the doctors found blood in her airways and lungs. It appears she had some type of pulmonary hemorrhage. This gave us a good scare as we weren't sure if she would stop bleeding.

Currently, there have been no indications of further bleeding into her lungs. She is on an oscillatory ventilator which is crucial for her oxygen levels. The extent of the damage to her lungs is unknown, but she will spend more time on the ventilator recovering than normal. Apparently the lungs are quick to be injured but slow to heal. Her status is best described as critical but stable.

The great news is that the planned surgery went excellent. The surgeons have already checked the function of the heart and coronary arteries and found everything to be working properly.

Linda and I are completely worn out, and we're taking the doctor's advice and making the drive home to get some sleep.

More info as it becomes available during the next few crucial days.

Pic of the Day - 2 Sep

2 September

Audrey is doing much better today. Her sodium levels are normal now. She has been eating like a champ. Her surgery is scheduled for around 2:30 pm tomorrow. She will be the second case of the day, so her time may flex.

Today Sue left to return to Maryland, and now Aunt Karen is on the job watching Caroline while we're away.

So many have touched base with us; It is wonderful to have such a great support group.

1 September

The surgery for today was postponed until Wednesday due to a temporary low sodium level in Audrey's blood. This is nothing critical, but it would not make for an ideal condition for her to be on the heart and lung bypass machine. Although a little tough at first, we are very glad that the surgical team had the patience to make the decision to postpone.

For now, it looks like surgery will be on Wednesday afternoon.

31 August

Well, not much new today. We met with the primary surgeon, Dr. Peter Pastuszko, and he reviewed everything again with us. Today they are trying again to insert a PICC line to ensure a good avenue for meds and fluids. The MRI from yesterday revealved nothing out of the ordinary. There are no tests scheduled for today, just to get ready for surgery tomorrow.

It has been very nice having Karen and Sue with us this past week. Caroline has been having lots of fun taking walks, playing, and spending time with Mee-Maw and Aunt Karen.

Today, we're going to spend as much time as possible with Audrey before her big day.

Pic of the Day - 30 Aug

30 August

Sorry for not updating last night. There is a lot of info to digest.

Audrey's surgery is scheduled for 7 am Monday morning. We'll need to be here at 5:45 to sign releases and see her before she gets prepped for surgery. The operation itself will take 7 to 8 hours and will be accomplished by two cardiac surgeons and who knows how many support personnel and otherwise. After she returns from surgery, she will have many lines and she will be intubated (on a breathing machine). Her chest will be sealed with a piece of plastic, and after 24-48 hours, her chest will be closed. This will allow her chest to return to normal size after the swelling subsides. Naturally, she will be in an "aquarium" of sorts to protect her from everyone else. By day 3 or 4 most of the lines and tubes will be out and we should be able to hold her and feed her. She is expected to spend at least two weeks in the NICU before she is released. I can't wait for that day!

We also found out that her heart valves are not formed correctly. Her pulmonary valve is bi-cuspid instead of tri-cuspid and her aortic valve has some thickening. The doctors are going to look at the valves while she is open, but they will most likely not be able to do anything now. The valves will be addressed years down the road if they become problematic. We hope they are good for at least 30 years. Who knows what types of surgeries they will have by then!

As far as good news goes, her scar will not grow with her. I didn't know much about wounds or wound care, but the doctors say the scar will remain mostly infant sized and will hopefully fade over the years. I hope it will be an interesting point for her someday to look at that scar and say that is where she had open heart surgery!

As far as her future activities goes, she will have a "normal" childhood. She will be able to run, play, rake rocks, and so forth. Her activity level will mostly depend on how well her valves are working, so she may not be able to participate in sports where she won't have the ability to rest whenever she needs.

Some may wonder if the heart problems are contributed to one thing or another... well, unfortunately, there is no single factor or combination that predisposes our children to heart issues, it's just random.

If you have any questions, you can post them or email us. Miss you all!

29 August

Hooray! Surgery is scheduled for Monday!

Linda and Karen are down with Audrey today, and Sue and I are home with Caroline. Caroline was getting "needy" plus I need to do some MAN things around the house. You can expect a better update and photo to be posted when Linda and Karen arrive back home.

Tons of emails and notes from people all over. What a great group of friends and family! Thanks to all!

I'll update again tonight (~9 pm pacific).

Pic of the Day - 28 Aug

28 August

Nothing new today really. Still waiting on the million dollar question of when the surgery will take place.

The Picture of the Day shows Audrey under her "sun lamp". As is the case in some newborns, she has neonatal jaundice ( http://en.wikipedia.org/wiki/Neonatal_jaundice ), or a yellowing of the skin due to an excess of bilirubin in her system. The light helps her metabolize the bilirubin, and it is wasted into her poo. No big deal there at all. The yellowing and light treatment are not related to her cardiac problems. Check out her cool shades that protect her eyes from the bright light.

That's about it. More info when it arrives.

Pic of the Day

Background info

Disclaimer: I'm a pilot, not a doctor, so be prepared for a 5 year old's interpretation of where baby's come from...

Greetings!

Thank you for all your concern during this difficult time. It really is wonderful to have so many people concerned about us. I'll be using this blog to keep everyone as up to date as possible on the happenings here in San Diego.

Currently, we are waiting on the surgical team to decide when they will conduct the cardiac surgery. Right now, it seems the surgery will take place sometime next week. As you can imagine, we are fairly anxious to proceed forward. It will take a few weeks for her to recover, and she will spend her entire recovery here in Childrens' ICU.

Today she moved to a new medication that will adjust how much blood is moved around her body.

Ok, so here is the background information if you're just catching up now.

Audrey Rose Fair was born on Sunday, August 24th at 3:51 pm. She weighed 5 lbs and 2 oz, a low birth-weight. Her umbilical cord was wrapped around her neck, and she was born a rich, royal purple color. After what seemed like an eternity, she took her first breath and pinked up.
Later that night, Linda noticed Audrey was turning a darker shade when she fed. In the morning a nurse went to bathe Audrey, and when Audrey cried, she turned blue and purple. She was immediately taken to the Neo-natal Intensive Care Unit (NICU) at Tri-City. After a short period, the decision was made that she needed advanced care, and she was transported to the NICU at Children's Hospital in San Diego.
After some examinations, it was determined that she has a congenital heart defect called Transposition of the Great Arteries. Basically this means that the in and out piping of her heart formed backwards, creating two separate blood transportation systems. On one side, blood travels from the heart to the lungs and back to the heart, and on the other, blood travels from the heart to the body and back to the heart, without going through the oxygen transfer process in the lungs. Currently, she has a sufficient transfer of oxygenated blood from one loop to the other through a hole in her heart, so she is not in any immediate danger. However, she will require open heart surgery within her first 3 weeks to detach and reattach her vessels to the correct spots. Of course, Linda has a much more thorough understanding of all this, but I hope this is clear enough.

It is unclear what the long term prognosis will be. The surgery will fix the emergent issues, but as far as 30+ years down the road, we don't know. This is mostly due to emerging surgery techniques. There is no data for the types of surgery they conduct now because it is so new. Problems associated with this surgery from 30 years ago won't really apply because of the new methods of surgery.

We are fortunate to know numerous medical professionals who are cardiac specialists from across the US. All agree that Children's is a great hospital and the NICU cardiac surgeons are among the best in the US. Not to diminish the severity of Audrey's condition, but the surgery she requires is not uncommon here. In fact, there are two children in front of Audrey to have the procedure.

Anyway, I want to get this posted. Thanks again for all your concern, and I'll post when I can.

Today is Andrew's Birthday. Happy Birthday Andrew!!! Wish we could all be together.