Wednesday, December 24, 2008

Merry Christmas!

I would like to share some of the pictures we had taken a week before Whitney's surgery... these are the pictures I would have used if we had been organized enough to send out a holiday card this year. In case you are wondering, the wonderful photographer is Angela Lurton! We found her when Anne was 6 months old and we are very lucky we did... she is GREAT!!! Here is her website if you would like to take a look:

Also, we went to a party with Santa and Mrs. Claus this past weekend and Anne received a "Pop Star" dress up outfit, complete with microphone. I am including in this post a video clip of her first putting it on and singing her rendition of Frosty the Snowman.

We have said this before, but we can't say it enough... THANK YOU!!!!! Thank you to all of our wonderful friends and family who have sent us their thoughts, prayers, support, encouragement, well wishes, and help during the past couple of months (especially during Whitney's surgery and recovery). We would like to wish everyone a very Merry Christmas, a Happy Hanukkah and all the best in 2009!

Mike, Laura, Anne & Whitney

Sunday, December 21, 2008

Spotlight on Maddie

If you happened to read the blog on Dec. 2nd (the day after Whitney's surgery) you know that I accidentally took Maddie's Xanax (anti-anxiety medicine) that morning and quickly fell fast asleep for a couple of hours. The Xanax does not seem to have the same effect on Maddie, at least when it comes to people visiting our house. Maddie LOVES visitors!!! She loves them too much - I do not think anyone who has come to our house has seen the calm, sweet, wonderful dog we live with. Instead, everyone sees her bark and go "looney" as Mike would say, and then we have to put her into our room with her "lampshade" on for the duration of the visit (or else risk the loss of one of Anne & Whitney's toys, of which she has ZERO interest when it is just us). Maddie has to wear the "lampshade" because of her anxiety issues involving licking her paws until they are raw and very sore. This is the reason for her Xanax - since Anne was born 2 1/2 years ago, and since Whitney arrived in late August Maddie seems to have become obsessed with licking her paws and it seems to be caused by anxiety or some sort of doggie mental disorder relating to her two new sisters (Anne and Whitney). Since starting the Xanax her paws look TONS better and she seems to be handling the adjustment to two kids just fine. In fact, I have not given her Xanax for the past couple of days and she is only minimally licking her paws - so hopefully she is on the mend!
I thought it would be nice to highlight Maddie in this blog and show our friends and family what a sweet doggie she is! Here are a couple of video clips of Maddie showing off with some of her tricks. We are also going to include a few pictures of Maddie + one of our cat, Isabelle. We also have some cute pictures of the girls we would like to share... ENJOY!

Thursday, December 18, 2008

Pulmonary hypertension medicine?

Whitney now weighs 10 pounds, 4 ounces. She had good pediatrician and cardiologist appointments this week. However, Whitney was referred to a pulmonologist because our pediatrician believes she may have tracheomalacia

Basically, her breathing has not improved since the surgery, so we remain concerned. Hopefully the pulmonologist will help us deal with this issue accordingly.

On a lighter note, Whitney is on some interesting medicine these days. She has to take sildenafil citrate to help with her pulmonary hypertension. What is sildenafil citrate also commonly referred to as? Yep......VIAGRA! Yes, my 3.5 month old DAUGHTER takes erectile dysfunction drugs! Basically, it was FIRST used as a pulmonary hypertension drug and the researchers realized its interesting side effect.

So Laura tells me that I need to go to the pharmacy to pick up Whitney's liquid sildenafil citrate, as she was busy with Anne and Whitney. Knowing that I am picking up Viagra, I felt a little weird about this errand. Nonetheless, I went to the pharmacy and looked over my shoulder to find no one behind me in line at the counter. Whew! I asked the pharmacist for Whitney Byron's prescription. Just as I do this, a younger couple gets RIGHT behind me in line at the pharmacy. Wouldn't you know it, one minute later, the pharmacist brings out a pretty big bottle in a white bag, with the words "VIAGRA" written in big capital letters right on the front of the bag. She holds it up and flashes it right in my face for all to see. No doubt, these people HAD to see that it said "VIAGRA" in big letters right on the front of the bag. I reached up and sheepishly turned the bag over to try and cover the viagra words, but I am certain they saw it.

The things we do for our children. When Whitney is older, MUCH, MUCH older, I'll have to tell her about the embarassment I went through for her health.

Sunday, December 14, 2008

first weekend home

We have been very busy with the girls since Whitney came home last Wednesday. Whitney has been sleeping A LOT. We hope it is because she still has to recover from her surgery. She still seems to breathe heavily. Again, we hope it is because she has to recover from the invasive surgery. We are concerned, yet remain hopeful. Whitney does have her color back. Before she was so pale and ashen looking. Now, she definitely has some color....particularly when she loses her pacifier. She gets REALLY mad or frustrated when her pacifier falls out of her mouth. Before the surgery, she couldn't even hold a pacifier in. Now, I keep thinking she's going to suck the thing straight to her stomach.

Whitney still needs the NG tube to eat. We have worked with her swallowing issues by giving her eye droppers of this 'witches brew' that consists of organic formula, breast milk and prescription formula combined with some sort of anti-gas drops. We give her a few drops of this mix to test her swallowing to see if it will improve, and she seems to do OK sometimes. Yet, sometimes she just spits it out like "I'm not going to do it, dad." Then we just give the rest of the mix to her through her NG tube. The formula she takes WREAKS.....let me assure you. If I were Whitney, I'd spit that stuff out too.

For the second time since Whitney was born we were able to go out Saturday night. My parents watched the girls while Laura and I went to a holiday party and then to a friend's surprise 30th b-day party. It was great to get out and see everyone and to not feel so stressed out about Whitney. We were encouraged by the many positive things people said to us about Whitney. We feel very lucky to have such great friends in our lives. I was also shocked to hear many comments about the blog. It seems like a lot of people tune in. Many thanks to you all and your comments. We'll keep keeping on, as will Whitney!

Here are a few pictures from the weekend: (Laura's photo shoot of Whitney in her Santa outfit + Laura bought these pink curler things to put in Anne's hair. Anne loved it!)

Wednesday, December 10, 2008

We are HOME!!!

We are home. Everybody is doing well. We arrived home around 3pm today and although things are still hectic and crazy we are so happy to be home!!! I will try to write more tomorrow, but for now here are some fun pictures from today. Whitney is smiling more often now that she is feeling better (she started smiling more and more on Monday of this week) and I tried to catch it with my camera... here is what I was able to capture. Also, after taking so many pictures of Whitney I also took some pictures of Anne (being a goofball!!!)

Whitney smiling:
Anne's funny faces:

Going home?

Yesterday was another busy day. Anne and I went to Riley early in the morning to meet with one of the speech therapists to figure out what we need to work on to get Whitney to take a bottle. We worked with the eyedropper before her ng tube feeding to practice swallowing. The speech therapist scheduled a swallow study for 8:30 a.m. this morning. This is the reason I am writing this post at 6a.m... we have an early day today... but an exciting one, Whitney is hopefully going home with us today! We had a chest xray and heart echo yesterday morning and yesterday afternoon Dr. Brown came to talk with us and said he was pleased by what he saw on both the xray and the echo. Whitney's oxygen was taken off yesterday and she seemed to be doing well all day without the oxygen. I am pretty sure as long as she had a good night we will probably get to go home this afternoon! Yeah!

Here are some pictures of our three visitors yesterday:

Laura & Lisa Weber

"Bonnie" (Lynne, Mike's mom)

Monday, December 8, 2008

Day 8

I am too tired to write about our day today (Anne and I spent almost 10 hours at the hospital with Whitney today... it was Mike's first day back at the office and he came down to see Whitney after work and we all spent some time together before I took Anne home to get her into bed.) Here are some pics from today... One of the pics is of Whitney's incision from the surgery because it is pretty unbelievable how great it looks just one week after surgery. Whitney was smiling quite a bit today, which melted our hearts!!! Hope everyone had a good Monday!

Sunday, December 7, 2008

Day 7: Heart Center update

(Mike here) Whitney is doing very well and is really on to her pacifier. It is amazing to see her energy right now. She REALLY wants that pacifier. If it falls out, she gets annoyed and grunts, waves her arms and legs and gets mad. Before the surgery, because of the holes in her heart, she had very low levels of oxygen in her system, her energy was zapped (basically her heart worked overtime just to pump, she would sweat and get really heated, etc. and sleep all the time). Now, Whitney seems totally normal, but just full of energy. I think we are in for it when we get her home. I HOPE she can sleep when we try to get her to bed in the coming weeks.

We HOPE to get Whitney home on Tuesday or Wednesday. We are very hopeful that this is the case. Then we can all return to our normal lives, Whitney included. Anne has now ridden the 'people mover' / monorail / train at the hospital three days in a row. She LOVES it. She announces "let's go to the 'hostipal' to see Whitney and ride the train!"

Laura's parents, Jim and Mary Alice, and Whitney's aunt Nicole (Laura's sister) visited us all at the hospital today. It was a good visit. The only down part of the visit was a patient in a room down the hall coded (had a cardiac arrest) and the place sprang into action. It was a very serious, life or death couple of minutes. Just seeing the seriousness of that situation from afar is enough to shake your soul. It appeared to be a teenage boy. They took him immediately to surgery. Last we heard, he appeared to be breathing. Still, just seeing that makes you want to hug your little ones that much tighter.

I am returning to work tomorrow and hope to resume a somewhat normal life. Laura is going to have her hands FULL once Whitney gets to come home. We'll be just fine. Take care!

Movin' On Up

Whitney has officially moved up to the 4th floor Heart Center! Yeah!!! We were with her when they moved her from the ICU to the heart center yesterday around 3:30 in the afternoon. Whitney is finally looking much better. (She did not look as good on Friday as on Thursday and was still having some trouble with breathing, but this seems to have improved!!!) We were lucky enough to have private rooms in the ICU but it was a very busy place with people all around just outside of the rooms, but now things seem calmer and we have a bigger room in the heart center with a private bathroom complete with shower! Our nurse in the heart center, Erin, was very nice and I think she is going to be Whitney's nurse again today (Sunday). I brought Anne home with me around 5pm and Mike stayed until the shift change to meet the night nurse and say goodnight to Whitney. Jen, our night nurse, said to bring clothes on Sunday because we can now dress Whitney in more than a diaper wrapped with blankets. I am excited to get to the hospital today to see Whitney & to dress her in some clothes!!!
We are very excited about a major event that took place with Whitney yesterday. She was able to take a pacifier on her own and kept it in her mouth all by herself!!! Before when we would try to give her a pacifier she would either gag or she seemed unable to keep it in her mouth without someone holding it for her. It seems like she now has the energy and strength to keep a pacifier in + she is hopefully over her aversion after getting sick from the formula we had been using (all different types, including prescription formula) to fortify the breast milk. We can't wait to meet with the speech therapist (in the hospital, speech therapists work with babies on feeding and swallowing issues) on Monday, hopefully, to try feeding her by mouth. (She is still taking all feedings through the ng tube )
Here are some pictures from yesterday:
Taking a pacifier all by herself

Whitney's room in the heart center

Friday, December 5, 2008

Day 5 update

(by Mike) Not much new to report today. Whitney is still in ICU and is not moving to the heart center until tomorrow....maybe...hopefully. Whitney's progress is slow and each day she improves. Her withdrawal from the sedatives seems to be going well. She is better today than she was yesterday. As a precaution they do not want to move Whitney today only to possibly have to move back at a later time.

Her lungs seem to be the reason she is not holding her oxygen saturation without the added oxygen through her nose. It may just take time. She is also not taking deep enough breaths. Again, it will probably just take time.

Anne visited her sister for the first time today. We watched Dora videos in the room and we even went on a ride on the 'train' (the Clarian monorail 'people mover' which connects Riley hospital to Methodist hospital). Anne LOVED the 'train' ride. She was a very good girl in the room, coloring, holding her sister's hand and just hanging out. Here are some pictures of Anne's visit.

Thursday, December 4, 2008

some day 4 pics

Day 4 update

(Mike writing...) We arrived this a.m. and found Whitney sitting in a bouncy seat, wide awake on top of her bed. She has had several more tubes and wires removed. Her chest drainage tube, her left and right arterial pressure lines, her IV, her catheter, all have been removed since yesterday. The only thing left in her is her central line and some monitoring electrodes on her, as well as her NG feeding tube and oxygen in her nose.

We both got to hold Whitney in a rocking chair today. It was a good feeling to finally be able to hold her. She did get awfully upset/feisty later on in the afternoon when she had to have her NG tube reinserted and taped back down to her cheek after she yanked it out. She also seemed to have withdrawal from her sedatives as she writhed around and shrieked like a very mad little baby. After Whitney's hissy fit she slept VERY hard.

If all continues to go well with Whitney, we may get to move her out of the ICU and into the heart center tomorrow. Today was a very good day. Here are some pictures that show Whitney's latest progress.
Whitney with breathing tube (above)
Making progress... NO BREATHING TUBE :)

Wednesday, December 3, 2008

Whitney is officially off of the ventilator!!!

Yeah! Whitney's breathing tube was removed at 3p.m. this afternoon. She did not appreciate them messing with her and the actual removal, but they immediately put her on vapotherm (it is oxygen through a nasal cannula ( with moisture to help keep from drying out her nasal passages) and she is breathing on her own!!! (with a little help from the oxygen/vapotherm) She is having some problems still with acid reflux, but you can tell that she is VERY HAPPY to have the breathing tube OUT!!!

I am in a waiting room on the heart center floor right now... I just wanted to send everyone the good news, one more tube removed = one step closer to a healthy Whitney!!!
Thank you for all of the good thoughts and all of the prayers, they are working!!!

Tuesday, December 2, 2008

Whitney, Day 2

Day 2, A Crazy Day!

It is about 8pm on Tuesday night and this is the first chance I have had to sit down and write. I am in Whitney's room right now and she is doing well but also having some challenges. She gets agitated each time the sedation wears off and she seems to be in pain and also bothered by the breathing tube. Luckily they have been giving her a good amount of pain medicine to keep her calm and feeling alright. Her blood pressure has been running low but they have given her calcium and blood to help and she seems to feel better after they do this. Overall, Whitney is strong and continues to amaze us!

OK - the real reason and now reasons why this is a crazy day. This morning around 6:30 a.m. I woke up and was very tired and wandered out to the kitchen. I started a 2 week round of Reglan last week to help increase my milk supply because Whitney cannot tolerate formula and I did not want to run the chance of not making enough milk to keep up with her. I have to take 3 pills spread out throughout the day and forgot to take these with me yesterday, so I did not want to forget today. I picked up a pill bottle off of the counter and took a pill then as soon as I swallowed I realized I forgot to look to see what I was taking. I picked up the bottle and soon realized I accidentally took Maddie's (our dog) Xanax. [Maddie is on Xanax for her "anxiety" or "issues". She really is the sweetest dog in the world but has an issue with licking her paws obsessively and also getting OVERLY EXCITED when people come over to visit, bring meals or help take care of Anne & Whitney. She is the best dog with our family but seems beside herself when it comes to other people. ] Anyway... about 20 minutes after I took the Xanax I became VERY tired and basically passed out. Mike said he was talking to me and it was like I was very drunk. I went into bed to sleep for a little bit and a couple of hours later Mike said he was going to go ahead to Riley without me. I do remember this conversation and saying that I wanted to go with him, but I was so out of it still that Mike said I had to stay here and my mom could come down from Lafayette to pick me up after picking up Anne and drive me down to Riley (since I should not be driving in my "drunken" Xanax state.) Around noon I was still feeling a little out of it and continued to feel out of it until about 3 or 4 this afternoon. Needless to say, I will be keeping Maddie's anti-anxiety medicine in a separate spot from the Reglan from now on. Luckily, I did not give Maddie the Reglan, so she is NOT lactating, I think we would be a little crazy at this point if I was on her drugs and she was all of the sudden trying to nurse anne's dolls.

More craziness... we are here at Riley and about 5 or 5:30p.m. Mike went to go find the Jeep in the parking garage to move it to a spot where I would be able to find it when I left later tonight after he was going to go home with my mom since he had been here all day. Mike had been gone for a long time and I was really starting to wonder where he had gone. Finally, he called and said he didn't know what had happened but that the car was missing.

OK, Mike now chiming in here:

After several laps walking around the parking garage by my lonesome, every floor, in the freezing cold, I thought I was going insane, I gave up and called security. After waiting for security for 20 more minutes 'John' from IUPUI Department of Parking showed up. John was very nice and drove me around to see if they could find our car and confirm that I was not crazy or losing my mind. After we found no car, we both gave up and John called in to his boss to see if the car had been towed. It was then confirmed that the car had indeed been towed!

At this time, I swear that I have 'no idea' why they towed the car. The story continues....I go back to The IUPUI Parking Department and I am told that the car was towed because "it was leaking gas." HUH? I was told the car was at Delaware and South parking garage next to Conseco Fieldouse (about 2 miles from Riley hospital). Not having a car, because it had been towed, I pleaded for a ride there from my new friend John. John drives me over to the Delaware and South tow yard and drops me off.

I go to open the door to the office to get my car. It is locked and no one is there. I call the number on the door and am told that "someone will be there in 20 minutes. Just hang out on the street." I hang out for 10 minutes in the freezing cold, and a guy appears at the door, lets me in and asks "where's your release from IUPUI to release the car?" Again, "HUH? Release, I don't know what you are talking about." I am then told "I can't release your car unless the university authorizes me to do so with a written release." I have no release. I have no car. I have no clue what is going on here at this point. I plead and beg the tow guy for a break..."hey man, my daughter is at Riley, I know nothing about any release, or IUPUI, etc., etc." Thankfully, the tow guy, Chirs, next says, "Look, my daughter was once at Riley, we'll cut you break....I've been in your shoes, I'll drive you over to get your release and we'll come back to get your car out."

"Thank you, oh god, thank you, please end this mass confusion, I'm freezing out here!"

Next, we head back to the IUPUI police department to get the release in Chris' tow truck. Guess what ? IUPUI PD is closed, lights off, doors locked. At this point my only thought is "Thank god I don't carry firearms or knives!" Chris, the tow guy, my new friend, says to me...."Hey, since you're at Riley, like I was (his daughter spent 8 months at Riley going through chemotherapy for her Leukemia when she was three years old), I'm going to cut you a break, we're going to get your car out without a release.....screw those IUPUI nazis (his words, not mine). Otherwise you would have to wait unitl tomorrow for the release to get your car out."

'Chris the tow guy' is my new hero/best friend.

Chris tells me how he has been shot at, been in fist fights, arguments, threatened, all while towing people's cars. Interesting guy... my new best friend Chris.

We end up back at the tow yard again. Chirs is nice enough to look over my car and says " I don't see gas, smell gas or see anything wrong with your car. That's b.s. those IUPUI guys towed your car for no reason." Did I forget to mention that Chris is my new best friend? So I grudgingly pay $50 to get my car out and come back to the hospital to get Laura and GET THE HECK OUT OF HERE 4 HOURS LATER! Long day, crazy day, all is good with Whitney....that's what really matters. Chris the tow guy for mayor!

Monday, December 1, 2008

Pictures of Whitney in the ICU: Day 1

Our Superhero: Dr. Brown

Whitney is doing GREAT!!!!!

Yeah! Whitney made it! We are so grateful to Dr. Brown and all of the staff that helped with the miracle of fixing Whitney's heart today!!! Dr. Brown met with us around 3:15 p.m. while Whitney was in the recovery room. He explained what he saw when he was doing her surgery. The mitral valve normally has two "flaps" or the word he used was "leaflets" (not sure of the technical term) that allow the blood to flow correctly, he said in this repair he has seen three "flaps" but Whitney had SIX "flaps". He said it was "intriguing" to see how her mitral valve was working and was put together and that it was like putting together a puzzle to make the repair of her mitral valve given the added difficulty of the way her mitral valve was structured. He also talked about the patches for the ASD and the VSD. She had two fairly large holes in the VSD, one the size of an oblong quarter and one about the size of a dime and one in the ASD that was also about the size of an oblong quarter. He commented that these were pretty big for someone so little.
Dr. Brown also mentioned that she had about 4 times the blood volume of a normal person flowing from her heart to her lungs. This explains her difficulty breathing. Her lungs were basically being flooded by the excessive blood flow.
Whitney is now in the ICU unit and hooked up to many machines that are monitoring all of her vitals. She has one nurse that is assigned only to her and will keep a close eye on her because Whitney will be her only patient. We feel really good after getting the chance to go in and see Whitney. We are so proud of her and so HAPPY she will be feeling like a whole new person very soon! THANK YOU DR. BROWN and everyone at Riley that is caring for our little angel!!!

I have taken pictures and will try to post them later tonight.

A BIG THANK YOU to everyone who has been praying for Whitney and keeping her (and us) in your thoughts today. It means the world to us!

Update 12-1-08

The nurse who is giving updates to all of the families in the waiting room just came around... here is the latest: Whitney is still doing well. They have finished the mitral valve repair and are now working on the two patches to repair the hole. (Dr. Brown is using pericardial tissue from Whitney's heart to form the ASD patch and the VSD patch. These patches will take care of the major hole that encompasses all 4 chambers of Whitney's heart.)

info about AV canal defect:

info about ASD & VSD

Whitney's Big Day: Open-Heart Surgery 12-1-08

Above are some pictures from first thing this morning, right before surgery and below are a few pictures from Thanksgiving time of the girls.

We got up VERY early this am.....4:30 am. Whitney has been a trooper so far. We fed her last at 12:45 last night/morning. She did not cry or fuss at all about being hungry this a.m. We got to the hospital at 6:15 am and checked in. There are pictures above of our last moments with Whitney before the surgery . Laura and I feel in very good hands here. The doctors, nurses and staff here at Riley are fantastic. It is kind of a weird feeling turning your little infant daughter over to a complete stranger, but Whitney is in the right place and the surgery needs to be done.

A nurse has already stopped by twice to brief us on her surgery and status. Whitney has been sedated and her chest has now been opened. Things are underway. As the nurse was leaving to give us the update, she told us that they are hooking Whitney up to the by-pass machine. She is on her way. More to follow soon as the updates come. Way to go Whitney!