Some more pictures!

Incredible Story about HLHS!

Message from Dad:

Attached is a link about an amazing story about a young girl that was diagnosed with HLHS in utero. Doctors tried a relatively new procedures to actually correct this defect before the child was born. It is truly an amazing story and this country is so blessed to have such skilled and talented people that perform these types of surgeries and provide care for both children and adults. Each day I am truly amazed by the medical profession. Yes, I know there are a lot of issues and problems with the health care industry. I am not here to debate that. I am here to just thank and marvel at the individuals that we have come across due to our son's condition. They are all truly amazing people and have such special talents and gifts. We are grateful to all of them and it would take days, even weeks, to name them all here. Maybe one day, with the aid of Katie's wonderful memory, we can cite the names on this blog. In the meantime, they all know who they are.

http://www.npr.org/2010/12/13/131968225/stitch-in-time-fixing-a-heart-defect-before-birth

Merry Christmas!!!!

Hello from Arch Terrace! It's Christmas Eve and I am taking a little nap in my swing right now (and typing at the same time). Technology is great, isn't it? Well, Grandma and Grandpa are coming over in a little while to hang out with us before Mom and Dad go over to Grandpa and Grandma Butler's for a little celebration. I wish I could attend but it's too cold, too snowy, and I still cannot be around large groups. So, until then, I am just listening to Christmas music that Mom and Dad are playing and snoozing and eating all day long! Which is great! However, I miss all my aunts, uncles, and especially my cousins my size who I can't wait to meet and play with.

Mom and Dad told me the other day that my second surgery for my heart will be sometime in February or early March next year. I am not looking forward to it but I know it needs to be done in order fix the "plumbing" in my heart.

There will be pictures just as soon as Mom and Dad learn how to download them :)

Until then, Merry Christmas to everyone!!!! Oh, and a big thanks and hugs again to everyone that has sent cards, food, and gifts to our house. Keep up those gifts for the little one, I heard he likes them :)

Can't Wait for Santa!

10 Weeks Old!

Hi everyone! Well I'm pretty excited that I turned 10 weeks old yesterday! I can't believe how old I'm getting! I am eating great and now mom and dad are putting me back on 3 hour feedings so I can have a more predictable schedule and they are swaddling me at night to help me sleep longer - and it seemed to work last night so we'll see! I also got an early Christmas present from Santa - a Little Lamb Cradle Swing - and I loooove it! I nap so well in it because it is so cozy and soothing! I think mom likes it too because she can get more stuff done while I'm sleeping:) I still like to fuss a bit at night and I feel badly because that's when daddy wants to spend time with me, but I can't help it because I get pretty tired and need to let someone know about it! Luckily my Aunt Melissa lent us The Happiest Baby on the Block so my mom and dad are getting good at calming me down! I am getting really excited for my first Christmas and I love staring at the lights on the tree. My daddy keeps saying he is going to put lights up outside, but it snowed and has been sooo cold out, so there's been a little delay. No worries, Dad, I cant go outside to see them anyway! I want to give a big welcome to my new baby 2nd cousin, Quinn! He is out in Colorado but hopefully we will meet soon! Talk to you all again soon - it's naptime!

I'm Back!

Hello friends and family,

Sorry for the long delay. I have been busy lately with doctor's visits, sleeping, eating a lot, hanging with mommy, daddy, and shelly dog and of course pooping and peeing (can't leave that out). Oh, I got dad wet the other day again. That was fun! Well, to update everyone on my doctor's visits: I saw my pediatrician on Monday and everything went well. I received a couple of vaccinations (one orally and two shots). I didn't like the shots at all but within 20 minutes I was out cold sleeping like a baby :) My pediatrician, Dr. Kreusser, told mom and dad that I was in the 40% for babies my age. She was very surprised by this considering I was in the hospital for 5 1/2 weeks. On Thursday I saw my cardiologist, Dr. Balzer, and he was pleased with my progress as well! I weighted in around 11 pounds 4 ounces and was around 22.7 inches long! They took a electrocardiogram of my heart and everything looked good. It appears that I am on schedule right now for my second surgery in February-March next year. Mom and dad talked with both doctors about day-care and they each strongly recommended waiting til after my second surgery to even consider it. I think mommy and daddy both agreed with this recommendation as they do not want me exposed to other sick kids during the flu season as I might not be able to fight off sickness as easily as other babies.

Mom and dad keep reminding me of all the friends and family that want to meet me one day. I am soooooo excited to see them all but know it will be some time as I need to be strong and healthy for my next surgery so I will just have to wait til it gets warm (plus I don't want to go out in this cold, wet St. Louis weather right now). They also are very thankful for the food that people have brought them even though I don't get to taste it (they tell me it is very good though).

One more thing: GO BEARS!!! Beat pretty boy Tom Brady and the Pats!

-Will

Month by Month!

More Pictures!

I'm Two Months Old

Hey everybody, I am another month older today and I am feeling great! Check out these pictures of all the fun stuff I've been up to lately! I have an appointment with the pediatrician on Monday and I will be getting my 2 month vaccines - yikes! I also go to the cardiologist on Thursday and my mom and dad are checking out a special day care this week that they heard about for kids like me. I'm not sure if I like the sound of this "day care" place because I am pretty happy spending all of my time at home with Mommy and Daddy but I guess it could be okay. I spent my very special 2 Month Birthday with my mom, dad and Shelly and I also had some awesome visits from my Aunt Lizzie, Grandma and Grandpa Saykes, Aunt Melissa and Grandpa Tom! What a fun day but now I'm pooped! Talk to you later!

Hungry Hippo

That's what Mom likes to call me. I guess that is a compliment? No idea.... I do know that I love to eat and eat a lot I do!!!! What else is a baby supposed to do? Yeah, yeah, I know - eat, sleep, poop, pee, etc. I do all those too but I love to eat. I am probably close to 11 pounds now as I am gearing up for the winter cold. Don't worry ladies, I will hit the gym in the spring but I need to chunk up right now to stay warm :)

Well, I am enjoying my Saturday with mommy, daddy, and shelly dog. I am soooo glad dad is home now as 'us' guys need some bonding time too. That's about it from here. I was told that I have a few more doctors appointments this week with my pediatrician and cardiologist. They are both great so I don't mind at all going to see them.

-Will

Guest Blogger: Dad

Hello from Little Rock, AR. It's dad here and he misses Mommy, Iron Will and Shelly dog very, very much. WOW, it sure looks like Will is gaining weight as I write this blog. The pictures look great mom! Well, keep up the excellent work mommy and tell Will that dad will be home soon enough so he won't be outnumbered by the ladies anymore :) Dad needs to get in some "man time" with his son.

Daddy is so proud of you William and can't wait to hug and kiss you when he gets home. And don't worry mommy, you will get a great big hug and kiss as well!!! And Shelly will get one too :) Kisses all around!!!!

Love,

-Dad

8 Weeks Old!

Wow, I can't believe I am already 8 weeks old! Time flies! I am settling into life at home pretty well. I do a lot of eating, sleeping and filling up my diaper! Ever since the doctor told my mom and dad that they could feed me like a normal baby (off the 3 hour schedule), I get hungry almost every 2 hours! My mom nicknamed me Hungry Hippo! My home nurse came by today and I weighed 10 lbs, 10 oz - holy cow! I am really enjoying my play mat and the bouncy chair that my cousin Bea lent me and I am sharing lots of smiles with my mom and dad in the morning! This week daddy had to go out of town for work and I miss him a ton! Mom is trying to figure out my "schedule" as she likes to call it, but so far there's not a lot of consistency - but I do sleep really well at night so she and dad are very happy about that! Well I'm off to eat again and I'll talk to you later!

Update after my first pediatrician visit

Hello everyone,

Well, today has been relatively quiet. Mom and dad are trying tummy time a little more often and I don't really mind it at all. There is a time limit, however, and I let mom and dad know when I am done with it. Anyway, I forgot to let everyone know about my visit to my pediatrician, Dr. Kreusser, on Friday. It went pretty well. I am gaining weight and I now weigh around 10 pounds 3 ounces according to her scale. What a tank!!! Anyways, she thought I looked good and everything checked out just fine. I did poop my pants during my check-up as I was down to my diaper and it was cold in that room! So, what else is there to do except to go potty.

I attached a picture that mom took when she took me for a walk the other day when it was warm out. I think I lasted about 5 minutes in it before I fell asleep.

So much to be thankful for!

Happy Thanksgiving everyone! This year I am thankful for a lot! I am thankful for loving family and friends, for the awesome doctors and nurses that cared for me, for the power of prayer and to be at home with my mom, dad and Shelly to celebrate! Love, William

May God bless all of you this Thanksgiving and we will be saying special blessings for you as well. We will also be praying for those that cannot be with their loved ones this year for whatever reason, and that they feel the love and support that everyone deserves!

Oh, and dad was telling me about the 3 F's on Thanksgiving - Food, Family and Football. Well, I am eating a ton, watching football with dad and spending time with mom and dad. Soon enough I will be spending more and more time with the rest of the Saykes and Butler families and I can't wait!!!

P.S. - did you notice anything???? Give up??? No more feeding tube!!! Yeah!!! Yep, mom and dad took it out last night with no problems. Yippee!

Tuesday, Nov. 23 - Seven Weeks Old

Yesterday was my 7 week old birthday. Well, mommy and daddy really didn't hold any elaborate celebration for me but I still enjoyed my day. Mommy says that I am working more and more towards a routine during my day - eat, play and awake time, sleep, and the occasional poop/pee and cry time. Note, the occasional cry time (according to mom and dad). It does seems like I am more comfortable now with my surroundings so I am not crying or fussing as much. But don't worry my friends, there is always still time to fuss around :) I am also so happy that my dressing is off of my chest now - I really did not like it when mom and dad changed it :(

Let's hope mommy and daddy feed me some turkey tomorrow. I can't wait.....

Update after our first doctor visit to our cardiologist

Today mommy and daddy went with me to see Dr. Balzer, my cardiologist. The visit for the most part went by without any incidents. However, the nurse told me that I had to take off my sweet outfit that mom put me in and leave me in my diaper to weigh me and take my vitals. I did not like it one bit! It was freakin cold in the doctor's office. We did receive some good news though - mommy and daddy no longer have to put that stinkin gauze and tape over my incision sight on my chest. Oh, and one of my medications was dropped to only once a day (my lasix to help me pee). Dr. Balzer also told mom and dad that we can take out my feeding tube since I am doing so well on my bottle feedings. However, I overheard mom and dad say that they may leave it in for a little bit longer to give me some of my medications as I hate the taste of them and like to spit some out if mom and dad try and sneak them in my mouth. They also had to draw some blood of mine for additional tests regarding my liver enzymes and the results won't be back for a few days. Luckily, they were able to draw blood on the first try! So, I only cried for a short while and then mommy gave me my bottle for lunch. What a smart mommy to remember to bring my lunch to the doctor's office. Unfortunately, I fell asleep after they took my blood and I had to finish my bottle once I got back home as I sleep for the entire car ride home.

Can't wait for Turkey Day!!!!

-Iron Will

Lazy Football Sunday

Don't really have much to say today. Da Bears won on Thursday so dad seemed pretty relaxed today. I behaved myself most of the day but I can get pretty cranky when I am hungry. Let's hope Dr. Balzer and the rest of his team increase my feedings when I see him tomorrow morning. Oh, and daddy is going back to work tomorrow so it will just be mommy and me. Dad doesn't have to worry, we won't throw a huge party without him. Well, sorry for the short post but I need to eat so talk to you later and go Bears!!!!

Good Morning and Bad Loss by our Billikens

Is it a yawn or smile? Take a guess.... Mom and dad think it's a smile and I tend to agree cause I love it here! Well, not much going on here today. Mommy just left to go see my cousin Beatrice (Bea)and Uncle Tommer and Aunt Erin. I can't wait to meet Bea as well as all my other cousins (Ethan and Hannah). I heard they are excited to meet me as well! I just hope they don't pick on me as I will be the youngest one of the family (as of now). So, it's just me, dad and Shelly hanging this morning. Dad told me that he may go see the SLU Billikens play basketball tonight. He talks about the Billikens all the time and when he will one day be able to take me to a game. It sounds really exciting and apparently SLU is pretty good (top 25 next year!)... or that is what dad says....

Our dog Shelly recently came back home but I really don't think I have noticed her yet. To tell you the truth I don't think Shelly has noticed me yet either. Soon enough we will be best friends (as long as I don't pull her tail). No promises :)

Almost forgot: our home nurse, Mariesa, stopped by again last night and everything was good. She measured me, weighed me and checked my vitals and all seemed to be just dandy! I weighed 9 lbs 7 oz and measured too long for her measuring tape. Actually, mommy and daddy have no idea how long I was. They just say that I look long (whatever that means). Mariesa also changed the tape on my feeding tube which made me mad! I didn't hold it against her as she is really nice and gentle on me. The tape just sticks to my skin and it hurts! Other than that, it was good check-up. She is stopping by again next week.

Update: SLU lost to Georgia by 2 points in the last second. Dad came home and was a little made but once I smiled for him he forgot about the loss. I told him that one day I will be hitting three pointers for the Billiken Blue. Tomorrow is football Sunday and I hope to be spending some time with daddy on the couch. It will be a relaxing day as the Bears already won on Thursday so Dad won't be as uptight as usual (did I say that.... :"))

Guess What I am Staring At?

Nope, not Dad. I know that was your first guess. Anyway, I am staring at the kitchen light fixture in my home. It's what I like to do cause there are so many neat shapes and colors in the light fixture. I also notice that mom and dad like to walk into the kitchen a lot when I am fussing and let me stare at the light fixture. Well, if it works for them it works for me cause as I said I like it! Oh, mommy tried tummy time on her this afternoon and it was pretty neat. I think I moved my head once or twice. After a while though I began to cry as I think I got tired. Mommy said that we will try it each day for a few minutes and see how I do. Other than that, not much has happened today. I seem to take my entire bottle during the morning and afternoon feedings. Once nighttime comes around, I don't eat as much and mom and dad have to put the remainder of my milk into the feeding tube. I am trying really hard to finish my bottle at each feeding because I hate that tube down my nose. Plus, it makes me look funny and I have a repuation to uphold. Right now I am snoozing on mommy's shoulder (and typing this at the same time - what talent I have!).

I wanted to let everyone know that I am going to see my cardiologist on Monday for my first check-up to see if everything is going well. So far, I feel pretty good so I hope I receive positive results. Please send some good vibes my way and keep me in your thoughts and prayers. Thanks again to everyone who is thinking of me and mom and dad. We really are thankful for all the loving support we are receiving and would not be where we are if not for both our family and friends. Till next time...

Wednesday, Nov. 17, 2010

I'm settling into life at home pretty well but I still haven't really gotten into a predictable schedule - hey, it's still only been 5 days! I am, however, making huge progress on my bottle feeding! This morning at 9amI finished my entire bottle - all 110 ML by mouth!!! My mom and dad gave me a little pep talk last night to remind me that the more milk I can eat on my own, the sooner I can get my feeding tube out, so that is some good motivation! I still don't finish my entire bottle every time because I get really sleepy and I am only allowed to eat for a half hour before the rest goes into my NG tube, but I am doing my best. Any by the way, I love to burp! I am sleeping pretty good at night still so mom and dad really appreciate that, but I have been getting pretty fussy during the evening hours. Mom and dad aren't sure what it is but they are starting to suspect a little gas may be the culprit :)

Last night we had our first follow up visit with our home nurse, Marisa, and she said I am doing great! I have gained some weight and now I am at 9lbs, 6oz - such a big boy already! Marisa also stressed the importance of remaining germ free and making sure any visitors have had flu shots, wash their hands, and only come to see me, mom and dad if they are super healthy!

This morning I spent a little time on my tummy because I am supposed to work on strengthening my neck muscles to hold my head up, but I pretty much just laid there today trying to figure out what I was supposed to be doing. Now I'm taking a little nap in my Boppy, which I love and I'll be up to eat at noon - I am going to rock that bottle again! Talk to you later!

6 Weeks Old and Snoozing Away...

Well, that's not what I do all day long. Mommy and daddy don't have it that easy :)

Today has been pretty good so far and it is my 6 week Birthday! I am also very excited to meet my home nurse this afternoon as mom and dad told me that she should be arriving here shortly. If she is anything like the nurses at Missouri Baptist or St. Louis Children's then I am in for the royal treatment! Those nurses rocked and I just want to give a "shout out" to all of them if they are listening (or reading in this case). They taught mom and dad all they know about Mom and dad seem to have me down on a routine as far as eating and giving me my medications. I don't seem to mind that at all but I hate it when they change my dressing for the incision site on my chest. That tape really hurts :(

My sleep patterns and fussiness are a little more unpredictable but I am still getting used to my surroundings and my new home. Dad is saying something about me being left-handed because he is and thinks it would be pretty cool if I were. I still have no idea what that means because as far as I know, I have two hands and plan to use them both. I do like to sleep with my hands above my head and dad also seems to be taking pictures when I do. Again, no idea what he is doing.

I want to give a big welcome to my new baby friends AJ, Kennedy and Maya that came into the world recently - I can't wait to meet all of my new little friends one day :)

We will check back in later after our home nurse visit to update you all on my progress. So far, so good!

Good Morning Everyone!

Well, it's day 3 at my new digs and I am enjoying every minute of it! I am a little fussy lately and that may be due to gas or the fact that I am in new surroundings and hearing new noises and seeing new things. I will get used to it eventually. Mom and dad put me in my swing yesterday and I think I enjoyed it for about 10 minutes. It's new to me so I think it may just take a while for me to like it. Today I am just relaxing with mom and dad and doing my normal thing that babies do - eat, sleep, and poop. Also, mom and dad seem to be more comfortable administering my medications through my feeding tube as I really don't taste them anymore or show them my "yucky" face. Mom has been trying on some of my sweet new Onesies. Oh, thanks again to everyone who has outfitted me. I must admit, I think I look pretty good (well, that is what mom and dad have been saying at least). OK, I think I just pooped my pants and I feel a little bit uncomfortable. It looks like this is Dad's turn to change my diaper as mommy is taking a nap. Oh, I almost forgot - it looks like I am going to get a visit tomorrow from the home health nurse. Mom and dad told me that I will probably get visits from the nurse once or twice a week for around 6 weeks. I hope I like the nurses :)

Talk to you all later...

Love, Will

Home Sweet Home!!! Plus a note on visitors...

I am finally saying good morning from the comfort of my pack 'n play in my new living room! Mom, dad and I got home yesterday around 3pm and had a busy night! The three of us will need a little time to get into the swing of things here at home without the help of all of our wonderful nurses, but so far so good! I am still working on eating from a bottle so I did go home with my feeding tube and a pump (which mom and dad finally figured out how to operate!) I got a tour of my new home last night and I was a little cranky because of all the activity going on, but I slept really well in my bassinet next to mom and dad's bed and I am pretty relaxed this morning.

***We are all going to be taking it easy at home and will be keeping visitors to a minimum for a while because it is very important that I get lots of rest and stay healthy through the winter. So if anyone does want to visit, please wait until you are 100% healthy! Also, if you've been around anyone else who is or has been sick, I would like you to wear a mask when you're around me, mom and dad. I still can't be around other babies or kids either, since we are at the beginning of flu season and I would like all my visitors to have gotten their flu shot. If you are around other kids a lot, it would be a good idea to get your Tdap vaccine (tetanus booster + pertussis/ whooping cough vaccine) if you would like to visit me, as well. I know it sounds like a lot to do just to visit, but getting sick would be a lot worse for me than for a healthy baby, so mom, dad and I are going to be sticklers when it comes to this stuff - I know you all understand!

Talk to you again soon!

Love,
Will

One more day to go!

Well it sounds like the plan is to send me home tomorrow! I am very excited but also a little nervous and I think mom and dad feel the same way. Last night I had a new neighbor - a little guy named Jase that is 2 months old and has the very same defect as me! My mom and his mom have been talking a lot about us and I think my mom is pretty thankful to have someone "in the know" to talk to about things that will be happening in the very near future. I started off my morning with some bolus feeds which means my milk is going into my stomach a little faster than normal. My mom, dad and I are also continuing to work on my bottle feeds and I have to say I think I am improving a little bit every time! I tried a gravity feed this morning which means the milk just went into my feeding from above without the regulation of a pump and I did okay, but about a half hour later I puked quite a bit up - yikes! I hear that happens, though, because the milk almost goes into my tummy faster than if I was eating by mouth so it's tough to keep it all in! My mom also got to practice placing my feeding tube and she did a really good job, even though I didn't like it one bit! I hope daddy does it quickly when it's his turn to practice. Mom and dad will also be giving me my meds and changing the dressing on my chest when I go home so they have a lot to remember but I know they will do a great job:) I also went down to the imaging center to get an ultrasound of my liver to make sure everthing was looking good and apparently I passed! I had to get some blood drawn, too and as usual my veins were not cooperating so they had to stick me 3 times before they could get it - ouch! The GI doctors came by to talk to us about my elevated enzymes and biliruben and said that it looks like everything is getting better so I probably won't have to be meeting with them once I go home. We picked our cardiologist the other day and will be following up with Dr. Balzer. I will also be getting follow up home visits from a nurse so they can check on my progress and weight gain. So, I'm going to rest up tonight because I'm sure I'll have a busy day tomorrow before they send me home - I can't wait!

Feeding Time!!!

Ok, well, actually I have been feeding continuously through my tube in my nose but last night and today mommy and daddy got to work on a bottle feed and I did great! It will be a slow process for me to get used to sucking from the bottle and figuring out how to swallow, but mom and dad as well as the nurses and doctors seem pleased with my progress so far. The doctors came in to see me this morning and told mom and dad that my liver enzymes were a bit elevated and that they were going to meet later today to figure out if anything needs to be done. They didn't seem too worried about it but told us that a plan may be created to lower my enzymes to a more acceptable level. Today I also received my physical therapy from Rebecca which I totally love! It really relaxes me and I asked mom and dad if we can take Rebecca home when I leave. Unfortunately, that won't happen, but mom and dad have been watching my therapy sessions so they can do it once I am home. The view from my room is amazing - you guys should check it out! I had the downtown view from my room in the CICU and now I have a view of Forest Park and Clayton.

All the doctors and nurses are so proud of my progress so far and I am feeling pretty good right now. My big goals now are to increase my feedings and learn how to feed from a bottle. If I can catch onto these things quickly, I won't need a feeding tube when I go home, but mom and dad want me to take my time so I will probably have the feeding tube for a little while longer. I may just amaze them and learn to feed from a bottle and not even need that feeding tube at home - I'll do my best! Stay tuned, friends, and send some good vibes my way so I will learn to enjoy this bottle soon :)