Saturday, January 31, 2009

Better Every Day!

The past two weeks have been the best two weeks so far (since Whitney was born 8/25/08). Each day Whitney is better and stronger and each day we start to feel more like we are back to "normal" (although "normal" for us is a new normal now!) It has been 2 weeks and 2 days since we pulled Whitney's ng feeding tube and she is eating from a bottle like a champ! We are so proud of her :) Even though these have been the best two weeks as far as Whitney's health is concerned and we are feeling like we are a little more "normal", I am feeling more and more like "when am I going to have time to catch up?" Now that we are through the very difficult part (hopefully) I really feel like I need to start catching up on all that I fell behind on... and each day I seem to only get through the present tasks at hand (and even then I still cannot keep up with all I need to do or should do!!!) I wish I had at least a 30 hour day or only needed 4 or 5 hours of sleep (now that Whitney does not have to eat in the middle of the night we are finally sleeping through the night and I can't imagine going back to just a few hours of sleep!!!) C'est la vie! (right?)

A couple of weeks ago we made a trip to Lafayette and were able to visit with my grandmother (we call her "Mamoo") who will be 91 on February 10th. It was great to see her and also to see my parents! I even went running with my Dad for only the 2nd time since Whitney was born! I really need to get motivated and start running regularly if I am going to even think of attempting the Indy mini-marathon at the beginning of May! Here are some pictures of Mamoo with the girls and one of my mom with Whitney...We also had the chance to play in 10 inches of snow!!! It took nearly 45 minutes to get diapers changed, try to go to the bathroom (Anne), get snow gear one Whitney, Anne & myself and get outside. I do not think Whitney was such a fan, but luckily she ended up falling asleep so Anne could run around and have a BLAST in the snow!!! Here are a few pictures of the girls in the snow...
We have been able to get together and be SOCIAL (can you believe it?) with some friends... here are some pictures with our friends, the Friedmans (Anne had so much fun and played so hard that she ended up falling asleep before we left and did NOT wake up, even through putting on jackets and driving home!)...

and here are some pictures with the Whitacres... (we had such a fun time at their house that Anne cried the whole way home "I still want to play at their house!" She said this over and over and even said it in a real cheery voice first thing in the morning the next day when I went in to get her out of bed:)

Sunday, January 18, 2009

One more picture...

Anne turned 2 1/2 on Friday - Happy 1/2 birthday, Anne!

Fun weekend!

Mike and I actually went OUT on Friday night!!! We saw Joel McHale (from E's The Soup) downtown on Friday night. We went with our very fun friends Christy & Jody Friedman and met some other friends out before the concert for Spanish tapas. It was so much fun - I think we have only been out (aside from maybe a dinner or two out) one other time since Whitney was born, so this was definitely needed! Saturday was a fun day too... Whitney and I went with Mike & Anne to soccer in the a.m. then we went out to lunch with Mike's parents, my parents & my sister. Saturday night we had a 1st birthday party to go to (Happy 1st birthday, Hank!) and had lots of fun Saturday night, too! It is a nice feeling to be able to go out in public with Whitney and actually have a life outside of Dr. appts & therapy appts! We definitely feel as though things are looking up so far in 2009! Today has been a day of laundry and recovery from the weekend.
We wanted to share some pictures of the girls without Whitney's feeding tube. She is getting stronger and better every day. She is really getting the hang of taking a bottle. I have so much confidence in her, that I packed up ALL of the tube feeding stuff that has been scattered about our house and put it in the attic - hopefully we will never see it again!!!

Hope everyone had a good weekend!

Thursday, January 15, 2009

Viagra pick up......round two

We have some very exciting news to share!!! We officially pulled Whitney's NG tube out. Yesterday she took 3 entire bottles of 4.5 ounces all by herself!!! We went to the cardiologist today and he said her heart sounds great, she looks great and when he heard how well she was doing with a bottle he said "Why don't you give it a try with feeding her from a bottle and pulling out the ng tube?" I explained that she is pretty tired first thing in the morning and at night and doesn't take an entire feeding from the bottle, but hopefully now she will start when she realizes it is the only way she will be getting her milk/food! We hope we NEVER have to put the tube back in! She looks so good without the tube - we will have to take some pictures over the next couple of days and post them, we are so excited :)

Now, Mike has some other news to share...

On another note, I had to go back to Nora Apothecary (tiny pharmacy in town, one of the only places that we can get sildenafil citrate - viagra - in liquid form), to get Whitney's Viagra prescription refilled. Yes, Whitney is on Viagra if you did not know. Apparently, Viagra was first a pulmonary hypertension drug, and then it was discovered to have a .... side effect. Anyway, I went back to the pharmacy, asked for "Whitney Byron's viagra." Next to the counter in this strange pharmacy/store is a bird cage. On top of the bird cage is a little parakeet standing OUTSIDE of his cage. Thinking the bird has to be friendly if he is out of his cage, I approach the bird with my finger out, and the bird opens his mouth to try to bite me. The pharmacist told me, "Don't approach him with a finger. He hates fingers. He's nice though." I asked her how old he was, and was told......23 YEARS OLD! This ornery, old bird is 23 years old, and sits all day at the pharmacy hanging out. Intersting life. I asked what his name was......his name is "Bo-Boo."

Next, I told the pharmacist how it is funny that my 4.5 month old daughter is on Viagra. The pharmacist says "That's nothing, we have DOGS that are on Viagra." I thought to myself, "What kind of place is this?!?!?" Regardless, please be on the look out for Bo-Boo, the crusty parakeet and for DOGS on Viagra!

Hopefully we will have some pictures of Whitney without her NG tube soon. Have a good weekend everyone.

Thursday, January 8, 2009

2009 A Whirlwind Already

2009 has been a whirlwind already --- a whirlwind of appointments, 7 appointments (to be exact).

Monday: (2 appts) a visit to the pulmonologist because of Whitney's continued "labored breathing". He confirmed that Whitney does have tracheomalacia and, in addition, laryngomalacia. We also had occupational therapy on Monday and Miss Wendy was VERY excited to see the progress Whitney has made since before the holidays with eating and how she has continued to get stronger as she recovers from surgery. (I will go into more detail about Whitney's eating later in this post.)

Tuesday: (3 appts) We had a physical therapy appointment (Miss Heather) and this was yet another good appointment. Whitney is getting stronger and is even beginning to pull her legs up when lying on her back. Heather said this is a 5 or 6 month skill, so we are very excited (Whitney turned 4 months old on Christmas Day). We raced to finish lunch as quickly as we could after PT to make it to not one, but two pediatrician appointments - yes, Anne actually had a Dr. appt. this week. I guess she decided it was about time she go to one of these doctor appointments we are always going to with Whitney:) This was a very positive appointment as well. Both girls looked good. Whitney's heart sounded GREAT and she managed to gain 1 lb. in just 3 weeks!!!!! Prior to her surgery she had only gained 2 lbs and a few ounces from birth until surgery, so this is a pretty big deal. Whitney now weighs 11 lbs 4 oz and is 23 1/2 inches!

Wednesday: (1 appt) We went to Riley Hospital to meet with Dr. Brown, Whitney's heart surgeon. Whitney had a chest X-ray when we first arrived and then later we met with Dr. Brown and he again confirmed that her heart sounds SO MUCH BETTER. He did mention that the chest X-ray shows that Whitney still has fluid in her lungs, but that it is improving and should continue to improve with the medicines she is taking. Nothing else to report (no news is good news!)

Thursday: (1 appt) We had speech therapy today (to work with Whitney on taking a bottle) and this appointment went VERY well. Whitney has improved a TON in the past week all the way around. She is feeling better, stronger, has better color, is more alert and best of all - she has started to take a bottle!!!!!!

The turn around really began to seem more significant on December 30th. She started latching on a bottle and taking a few sips and swallowing without gagging. Then as each day has gone by she started taking a little more, then a little more and each time could do a little bit better with the bottle before becoming too exhausted to continue. Today is the best day of all!!!! She took 2 1/2 ounces (70 ml) with the speech therapist and then when I fed her tonight she took her entire feeding, 130 ml (a little more than 4 oz)!!!!!!!!!!!!!! This is truly a MAJOR accomplishment. Prior to the surgery, Whitney would not even latch onto a bottle and soon after the surgery the most we could get her to take was 3-5 ml (a splash of milk, at the most). I immediately called my parents, brother, sister-in-law & sisters then Mike called his parents, brother & sister-in-law to share the news! (Can you tell we are excited?)

As a side note, we had a very fun (as much fun as you can have with 2 year olds and babies for New Year's celebrations) New Year's Eve. We drove to the booming metropolis of Floyds Knobs, IN to ring in the new year with our friends the Cassises. (Floyds Knobs is on the Indiana side of the Ohio River, just across from Louisville.) Andrew & Angie (the parents) have a little girl, Claire, who is just 4 months older than Anne & a little boy, Drew, who is just 4 months older than Whitney. Anne had the best time ever with Claire and keeps asking when Claire is going to come to her house and she wants me to call them so she can talk on the phone with Claire (this desire to talk on the phone is starting already?) Thank you Angie and Andrew for a fun start to 2009. Whitney even had the chance to go out of state on this trip - we crossed the river and took a family picture in Kentucky in front of the Louisville Slugger museum.

Happy New Year! Here is an Irish toast and an Irish blessing for 2009:

In the New Year, may your right hand always be stretched out in friendship and never in want.

May joy and peace surround you,
Contentment latch your door,
And happiness be with you now,
And bless you evermore.

Claire & Anne - partners in crime

Whitney's mohawk is 'kickin