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

3 Months Old

Apparently my dad is hilarious! Who knew?

Oh, and does this shirt make me look fat?

GOOD, I'm a baby!

...and no, it is not a toupee!

Some good information we found online pertaining to my care...

from www.babyheartspress.com/hlhs

Once you are home you must make decisions about how your child will be cared for. Ideally, either the mother or the father will stay home with the child. Daycare facilities represent a higher risk of infection than home care. Certain diseases can be life-threatening, especially for transplant babies. RSV (respiratory syncitial virus) is one such infection. While dangerous for any newborn baby to contract, it is even more dangerous for a baby with a heart condition and could be life-threatening. In older children and adults RSV simply acts like a cold. Another virus especially dangerous for transplant babies is CMV (cytomegalovirus) which also presents itself as an ordinary cold in children and adults.

In order to protect your baby from infections there are some simple things you can do:

-avoid day care settings
-don’t smoke or allow anyone to smoke near your baby
-don’t take your baby out in crowded settings especially if in an enclosed space (such as stores, small restaurants, etc.)
-don’t take your baby to places where many young children will be (that even includes church nurseries)
-don’t take your baby where you know someone is sick and don’t let sick people in your home
-don’t be afraid to ask (or tell) people not to touch your baby (nobody should touch your baby without first washing hands) and wash hands often (yours, baby’s and family members).

It is especially important to wash hands after using the bathroom or changing diapers. Some doctors recommend that heart transplant babies should not have pets or houseplants.

That was a big list of don’ts. Here are some do’s:

-do treat your child as normally as possible
-do visit with relatives and friends, especially outdoors or in open spaces when everyone is well (limit the number of visitors at a time)
-do kiss your baby (not on the mouth or if you are sick), love your baby and have fun
-if you must go out to a restaurant or some place where someone sneezes or coughs, move or ask to be moved to another place away from that person
-do keep your baby up to date on immunizations - childhood diseases are much more dangerous to your baby (heart transplant babies cannot have live virus vaccinations)
-get a special bracelet or anklet for your child to wear indicating that the baby has HLHS or is a heart transplant patient and list the medications the baby takes and
-do have a positive attitude - that alone goes far in developing a healthy person.

One other thing you may want to do is to contact the nearest Fire Station and/or paramedics in order to inform them that your baby has a heart condition and may require emergency treatment or resuscitation.

Your baby will probably require some kind of medication (most commonly Lasix and digoxin for Norwood babies) and possibly some kind of equipment - whether it be some kind of monitor, feeding device or portable oxygen. Make sure you feel comfortable administering the medicines and using any equipment. Get a phone number of somebody to call in case you develop a problem or have a question. The nurses will be happy to help you learn how to care for your baby before you leave the hospital. Your baby may also need some kind of therapy (speech, physical or occupational) to help promote normal growth or to reteach certain skills. The hospital social worker can help you identify programs right for your child.

Happy New Year!

Well I rang in the New Year with my Grandma and Grandpa Saykes because my mom and dad deserted me to go to dinner with Aunt Liz, Uncle Pat, Aunt Barb and Grandma and Grandpa Butler! I didn't miss them though because I love spending time with my Grandparents - they spoil me so much! I have been enjoying my time at home with mom and dad quite a bit and I am eating more than ever. I am not sure how much I weigh or how tall I am because it's been a while since my last doctor's appointment but I have one on the 13th and I think they will confirm that I am a chunker! I am also sleeping really well at night - about 10 hours - and my mom and dad are loving that! As long as I get a big bottle, a clean diaper and a tight swaddle before I get into my crib, I fall asleep pretty quickly and stay nice and toasty all night long. I discovered a new activity too - sucking on my hands! It is so fun to stick them in my mouth and sometimes I can't decide which one to eat so I put them both in. I am still working on holding my head up when mom makes me do tummy time. I don't hate it as much as I used too but I don't like doing it for too long. After looking around a bit, I just get so tired so I lay my head on the ground and yell at my mom to turn me back over. I like it a little better when I can do tummy time on mom and dad's tummies :) This winter air is really rough on my skin so I have been fighting a little dry skin rash on my face and tummy. I don't like when mom smears vaseline all over me but it is helping a lot so I guess I should let her do it. Mom and dad keep apologizing to me because apparently I've inherited their fair sensitive skin - guess we should stock up on moisturizer and sunscreen! I have also been very lucky to remain healthy because my dad and mom caught colds a few weeks ago but haven't given anything to me - yay! I guess it is because I am Iron Will - and I'm going to do my best to keep the germs away! Well, I will talk to you all soon! I wish everyone a wonderful 2011 and I know that my surgery #2 is going to go great so I will be able to play with all my wonderful friends and family this summer!