Cardiac Cath, Solids and Sleep!

Hi Everyone,

I had my cardiac catheterization last Tuesday and it went great! Dr. Balzer said everything looked good and that they could go ahead and schedule my Glenn at my next visit! It was a very long day at the hospital and we had to go for a few hours on Monday to get our instructions and a chest x-ray for Tuesday. Mom and dad actually woke me up at 1:30am because it was the last time I could have a bottle of milk before my cath. The only thing I could drink after that was pedialite and apple juice - ick. We got to the hospital bright and early on Tuesday and I met my awesome nurse, Heather! They took me pretty quickly into the cath lab to get started and I was back in my room in 7 West in about 3 hours. I got to sleep the rest of the afternoon and Dr. Balzer showed my mom and dad a video of my cath - pretty cool! He said everything looked good - no collateral veins had formed in my lungs and I only had a slight kink in my aorta that didn't need fixing and my pressures all looked good! We were very relieved to get such great news! We finally got to go home about 4:30pm but we made sure to stop by and visit with some of our favorite nurses - Andrea, Ali, Megan, Dora - and our RT Sheila! I was really exhausted and had some trouble sleeping that night, and I also threw up a few times which was awful! They warned us that I could be a little sick from the anesthesia. Luckily mom and dad watched me closely and were there to make sure I was okay. I think I got a little more sleep than they did but we were all pretty tired on Wednesday. So now I have to go back in early March to see Dr. Balzer and he said at that point they'd be able to schedule my next surgery - yikes! I know it is going to be just fine, though, and one of my Children's buddies, Jace, just made it successfully through his Glenn so he is a big inspiration to me!

In other news, I've been eating rice cereal, oatmeal, sweet potatoes and bananas! Yes, I know, I am such a big boy to be eating solids! I really like the taste but I am still trying to figure out how to eat and swallow without getting food all over myself. I think I still like my bottle the best, but these solids are pretty tasty! I also rolled over onto my stomach today! My nanny Annie was there to watch me and told my mom when she got home. I've been so close to rolling over for a few weeks now and I finally made it! So now, unfortunately, mom and dad have to figure out how to keep me sleeping at night without being swaddled - it's going to be quite a challenge. Ever since my cath, my sleeping has been a little off and I am waking up quite a bit in the early morning. I don't mind it too much because I can just make a few noises and then mom and dad run in to give me my pacifier and I fall right back to sleep. I think mom and dad are getting a little tired of my new habit, though, because they talk about inventing a pacifier that will stay in my mouth :) They also suspect that I may be in the early stages of teething because I really like to chew on my hands and mom's fingers and arms - I guess they'll just have to stay tuned!

So that's what's going on in my exciting baby life for now! Talk to you soon!


Love,

Will

Be my Valentine!

Hi Everybody! It's been a while since I've posted and I'm sorry for keeing everyone hanging! I have been super busy getting big and learning lots of new things! I got weighed today and am 15 lbs, 4 oz! Holy cow, I am a big boy! I had to get two shots today too, one in each leg, OUCH! It is something called Synegis which is going to help keep me healthy, but I sure don't like getting shots! Angie, the nurse who comes to visit me is super nice and gives me the shots as fast as she can so it really doesn't hurt for long...plus I am a really tough guy so I barely cied (well maybe just a little). I am a little over 4 months old now and mom and dad did another annoying photo session. Right now my favorite thing to do is put my hands in my mouth so I made it pretty hard for them to get lots of good pictures (ha ha!)

I have big plans for my first Valentine's Day - I am going going to have my cardiac catheterization at Children's that day! I'm going Monday for a pre-visit and then I'll be there all day Tuesday for my cath. I'm a little nervous to be going back to the hospital but I will have mommy and daddy with me so I know it'll be okay. I'm also hoping to see some of the wonderful doctors and nurses that took care of me when I was in the hospital back in October and November! I'll let you all know how it goes!

Love,

Will

Oh and here's a video of me talkng to mom!

A few of my favorite things...baby edition

I thought I'd take some time to tell you all about some of my favorite things! As a baby, I have a lot of stuff and mom and dad tell me I've pretty much taken over the entire house - but here are some of the best things that I don't think I (or my mom and dad) could live without!

1. Wubbanub - a wonderful gift from my friends Anne, Matt and Evie - solves the problem of the disappearing Soothie pacifier (I already have the monkey and my giraffe just came in the mail!)

http://www.wubbanub.com/monkey-pacifier.html

2. My Little Lamb Swing - love this for naps, so snuggly

http://www.fisher-price.com/fp.aspx?st=2000&e=product&pid=45667

3. My Pal Scout - from my Aunt Lizzie and Uncle Pat - a dog that talks, sings and knows my name, favorite color (green), animal (giraffe), and food (burritos)

http://www.leapfrog.com/toys/

4. Vaseline & Aquaphor - I am a sensitive guy and this is about the only stuff that works on my dry skin and doesn't give me a rash

5. Sound Spa Lullabye Relaxation Machine - drowns out my loud parents so I can sleep through the night

http://www.amazon.com/Homedics-SS-3000-Soundspa-Lullaby-White/dp/accessories/B000QTSW64

6. Bouncy Seat - on loan from my Uncle Tommer, Aunt Erin and Cousin Bea - we can move it around the house and it keep me stationary while my mom and dad "get stuff done"

http://www.amazon.com/Fisher-Price-Precious-Planet-Giraffe-Bouncer/dp/B001GQ2RVW

7. Bjorn - another loaner from my friends Brooke, Peter and Parker - great for walks with Shelly so mom and dad can be "hands-free"

8. Dr. Brown's Bottle Warmer - I love me a warm bottle and this one works great!

9. Johnson's Safety Swabs - yes, babies get earwax

10. Goodnight Moon by Margaret Wise Brown - best bedtime book ever

11. Snuggle Puppy by Sandra Boynton - best bedtime song book ever

12. Baby Car Seat Carrier Cover - it's cold out there and this is safe to use on my car seat

http://www.toysrus.com/product/index.jsp?productId=4033679&CAWELAID=689623392

13. Elephant Mirror Mobile - "Harry Elafonte" is his name and he hangs over my changing table to entertain/distract me while I get a clean diaper
http://www.amazon.com/Infantino-158-342-Changing-Table-Mobile/dp/B002PI6EA0

14. Luv U Zoo Play Mat - I love the music and the fun toys that I can bat with my hands

http://www.fisher-price.com/fp.aspx?st=7722&e=cprProd&pid=55331

15. Bibs - For when I drool, dribble milk, spit out my medicine (ha ha). I have a variety of styles and colors to keep things interesting

16. Amazon - Well, really my mom loves Amazon and if you join Amazon Moms, you get free 2 day shipping with an Amazon Prime introductory free trial (just a tip for all you other mommies out there). It is a must for us especially since I can't be out in public, so it saves mom and dad a lot of shopping trips!

Well that's about it! I hope my list helps all of you new mommies, daddies and babies out there!

Visit with the Pediatrician

I had my 4 month visit with Dr. Kreusser today and I am exhausted! Unfortunately I had to swallow some medicine and I got 2 shots - yikes! I am a tough guy, though, so I only cried for a few seconds:) They weighed and measured me and I was 14.8 pounds (50th percentile) and 25.5 inches long (75th percentile) - so everything was great there! I really did my best to charm Dr. Kreusser and the nurses so they won't give me any more shots when I come back, and I think I did a pretty good job flashing my big blue eyes and that "innocent" baby face I do so well! Dr. Kreusser also said that if mom and dad wanted to start feeding me some rice cereal or baby oatmeal, to go ahead, becuase I am about maxed out on my milk intake. I don't think I'll have a problem letting them all know when I'm not getting enough to eat - I've never had a problem with that in the past!
Later!
Will

Lot's to Update!

Sorry I haven't been keeping up too well with my blogging, but I've been a very busy guy! Last Wednesday, I visited my Neurologist, Dr. Mathula Thangarajh, and had a very good checkup! It got off to a rough start because it was right around my lunch time and mom didn't have my bottle warm enough (and I am very picky about the temperature of my milk). Once they got it right (finally!) and I was able to eat, I was one happy and curious little patient! Along with Dr. Mathula, I met Dr. Larson and also a Dr. Catherine Butler - which was very funny because that is my mom's maiden name (minus the Dr. and with a K)! Since I looked so good and passed all my tests, they told us that they wanted to wean me off my Phenobarbital (anti-seizure medicine). I was so happy because this stuff tastes awful! So I went down to half my dose last Wednesday and this Wednesday will go half again until I am done on February 2nd. I had a rough few days of naps after I went down on it last week because a side effect is sleepiness, but I am napping fine again now!
I am also loving my new nannies, Annie and KC! They are so nice and fun to play with and take excellent care of me while my mom and dad are at work. Shelly, my dog, likes to bark at them when they get to my house in the morning which is so annoying! She usually calms down in a few minutes and then sleeps the rest of the day like her usual lazy self.
I am developing quite a personality, too, as mom and dad like to tell everyone. I love to smile and play with my talking dog Scout and on my play mat. I have also been talking quite a bit more and I have a lot to say, but unfortunately I don't think mom and dad understand me most of the time - we'll have to work on that :) I'm also still quite skilled at escaping my swaddle at night. I don't think mom and dad will win this one, because I am very persistent and strong so I just squirm and kick until I can pop my arm out! Luckily mom usually hears me and rewraps me before I completely wake myself up, so I am still getting my 10 hours of sleep each night. My appetite hasn't let up either, so mom and dad are giving me a little formula now with my milk. I don't really taste the difference since they mix it up all together so it's fine by me, and as long as my belly is full, I'm happy!
So, all in all, I am really enjoying babyhood - chunking up every day and having as much fun as I can!
Talk to you soon! And I wanted to give a shout out to my friends in Delaware and all my great nurse friends at Children's!
Love,
Will

A sad day for the Bears

Despite all my efforts to cheer on my favorite football team, it was not meant to be :(

Post Cardiologist Visit

Well, I had a visit with my cardiologist, Dr. Balzer, last Thursday. Mom, Dad and I were pretty curious to see how he thought I was doing and also to see how much I weighed since it's been about a month since I've been to see a doctor. We first got to meet with Dr. Broderick who went to Notre Dame with one of Mommy's good friends - they tell me St. Louis is a small world! My oxygen saturations looked really good and I weighed 13 pounds, 10 ounces and was 24 inches long - big boy! I was really curious about all of the medical instruments around me and I just loved staring at everything! The docs sent me to the heart station to get an EKG and an Echo and those both went really well - especially since Jim let mom hold me on her lap while they did the Echo this time and I got to have my monkey pacifier! When we got back to the exam room, Dr. Balzer and Dr. Broderick said that my Echo looked really good and he didn't see anything going on with my heart that might be an additional complication, so we were all very happy to hear that! He also said it was great that I was gaining so much weight and that I have stayed so healthy at home so far! He told us that they were going to schedule my cardiac catheterization in about a month, which is when they run a catheter up into my heart in order to check the pressures in there. As long as the pressures look good, that means that the blood will flow in the right direction once they perform my next surgery, the Glenn procedure. I will be in the hospital for a whole day when they do my "Cath" on February 15th and I have to go in the day before for a few hours to meet with the doctors and the anesthesiologist to get ready for the procedure. I have to admit I am not looking forward to going back into the hospital, but I am a big strong guy now so I know I will do just fine! Once everyting checks out on the Cath., they will go ahead and set a surgery date for me - yikes! Mom and Dad think it may be more like mid-March instead of late Feb. or early March because the further out I can make it from cold and flu season before they perform my next surgery, the better. And, because I'm doing so well so far, the doctors feel comfortable putting the sugery off a little until it is the best possible time for me to have it. I am glad that they are letting me get bigger and stronger before I have to go through that again, but it definitely makes me, my mom and my dad a little nervous to think about what is coming up. Well, enough about all that medical stuff! In other big news, my mom went back to work today! She and Dad worked hard to find some babysitters to take care of me during the day because I still can't go to daycare or even be around other children until after my next surgery. Luckily mom's boss and entire company is being very very understanding about my situation, so she got to spend a few extra weeks at home while we figured out our new plan! I was very happy that Dad was off for the MLK holiday today, so I won't actually stay with one of my new sitters until Wednesday. I think they are going to be a lot of fun, though, and we got to meet them both last week (and they think I am a pretty cute little guy so I think they are excited too!) Annie is my sitter on Tuesdays and Thursdays and she is going to school for Early Childhood Development and then KC is my Monday/ Wednesday sitter and she is starting the Nursing program at Barnes this May - so both of these girls will take excellent care of me! I also had to get my 3rd Synegis shot this morning - OUCH! I did not like it one bit but I didn't cry for long and now I am protected another month from getting really really sick if I were to get RSV. Other than that, I had a great day at home with dad - he is the best and makes me laugh all the time with his silly noises and crazy dancing. Well, I'll sign off for now and I'll be sure to update everyone after my visit to the pediatrician, Dr. Kreusser, next Wednesday!
Love,
Will