Tuesday, November 30, 2010

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!

Sunday, November 28, 2010

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.

Thursday, November 25, 2010

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!

Wednesday, November 24, 2010

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.....

Monday, November 22, 2010

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

Sunday, November 21, 2010

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!!!!

Saturday, November 20, 2010

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.... :"))

Thursday, November 18, 2010

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, November 17, 2010

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!

Tuesday, November 16, 2010

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!

Monday, November 15, 2010

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

Saturday, November 13, 2010

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

Thursday, November 11, 2010

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!

Wednesday, November 10, 2010

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 :)

Tuesday, November 9, 2010

5 Weeks Old Today!!!


Wow, today mommy and daddy told me that I am 5 weeks old. I have no idea how long that is but they seemed to be pretty happy. Anyway, I found out early yesterday evening that I was moving to the "step-down" unit on 7W at the hospital. This is going to be my last stop before heading home! I am healing very well from my surgery and my oxygen, blood pressure, and heart rate levels are holding steady. All the doctors and staff seem to be pretty pleased with my progressand I am very excited to be moving to 7W because I'll have more one-on-one time with mommy and daddy. They have been changing my diapers and learning to do a lot more things for me because I don't have my own nurse like I did in the CICU, plus they have to do everything themselves once we are all home! Mommy and daddy will be administering my daily medications, checking my feeding tube placement and also placing my feeding tube if it were ever to come out. This afternoon I saw my friends from speech therapy who are helping me figure out how to eat from a bottle. Mom and Dad have full confidence that I should be able learn quickly because I love sucking and playing with my "binkie". My room here is totally different from my room in the CICU. I could share a room with another patient, and fortunately, I had the room to myself last night but tonight I think I'm going to have a neighbor. I hear it's another little one and I'm hoping maybe it's a girl that I can "flirt" with, as mommy and daddy like to say (whatever that means).
* The three of us cannot stress how grateful and thankful they are to everyone who has played a part in getting us through these last several weeks. The thoughts, prayers and support have definitely played an essential part in both Will's successful surgery and recovery as well as in keeping Mom and Dad healthy and strong during this time. We do ask that you keep sending your thoughts and prayers our way as this is just the "first step" in Will's journey that will require two additional heart surgeries in the future. Thanks again to you all1
Love,
Katie, Chris, and Iron Will Saykes

Monday, November 8, 2010

Monday, Nov. 8, 2010


I am snoozing right now and relaxing to the ocean waves sound from my sleep sheep (thank you Parker!) I had a really busy morning already - I got a new peripheral IV put into my foot so the doctors can finally remove the last RA line that was put in prior to my surgery. I also had to get some abdominal x-rays because my poops tested positive for a little blood again - hopefully it is just a little left over from before my surgery and nothing new to worry about! The doctors from General Surgery decided it is not too worrisome yet, so I am still getting my milk (16 MLs/ hour) but they are not going to increase it for the time being until they can make sure my tummy is healthy! They are still weaning my morphine but I am handling that like a champ, and now I am getting all my meds through my feeding tube. I am also still getting my PD therapy every 8 hours and I should be getting a visit from Rebecca, my PT, today which I am really looking forward to! I had lots of visitors yesterday - Melanie, Kristen, Poppy and Mimi (Grandma and Grandpa Saykes), and my Aunt Lizzie and Uncle Pat - it was so fun to hang out with everyone! Oh, and the Bears won - yay!

Sunday, November 7, 2010

Sunday, Nov. 7, 2010


Another football Sunday in the CICU! I am beginning to think the nurses and doctors want to keep me around because I am so cute and well behaved :) I had a great night and am now up to 12 ML's per hour on my milk! They are still moving me up slowly to make sure my stomach and intestines can handle my feedings well but so far so good. My lungs also looked really good on my morning x-rays so they are only going to do my PD therapy every 8 hours. I can't say I am going to miss it very much but I am going to miss the visits from my wonderful RTs (hopefully they will still stop in to say hi to me from time to time). I am feeling and looking really good lately and my mom and dad can hold me a lot more easily since I'm not hooked up to so many wires any more! I love looking at my colorful mobile, my musical mirror and my stuffed animals...and of course at my mom and dad! I have been getting the hiccups quite a bit lately, too which I don't mind much, but I do make a funny squeaking sound when I get them. I am also a pro at sucking on my pacifier, so I do that as much as I can because it is good practice for when I am finally able to eat from a bottle.

Saturday, November 6, 2010

Saturday Nov. 6, 2010








Hello everyone! Today has been a relatively quiet one for me. The docs upped my feedings again, which is great and I can't wait til I can actually eat from a bottle (pretty soon I hope). The doctors did lower my dose of "gatorade" (TPN) which indicates that they want me to feed more from mommy's milk. I am now only receiving my PD therapy every 4 hours which is the result of my lungs improving. I have also been going down on the pressure in my nasal canula and will be getting it out completely today - yay, less tape on my face! I also got to be held by my daddy today, which I loved! I didn't realize how much I love lying in mom and dad's arms and being so close to them! It makes me feel warm, cozy and very safe. So, my plan for today is to eat, which I am constantly doing since my feeding tube is going through my nose, sleep, poop and stare at mommy and daddy. Oh, and I also like to look at my nurses and respiratory therapists - mom and dad like to joke that I am getting a lot of "girlfriends" in the CICU but I don't know what that means...wink!

Friday, November 5, 2010

Friday, Nov. 5, 2010


Today I am one month old! Can you believe it? My mom and dad have been debating on whether to count my age by weeks or from the date I was born. Either way, it's Friday and I am just snoozing the morning away. I also found out that I really don't mind sleeping on my tummy. Rebecca came by to do my physical therapy this morning and I slept right through it again. Mom and dad better plan on continuing my PT once I am home because it rocks! I also had my ART line removed from my right hand so now I am free to move both arms around and touch and pull all the tubes and wires around me. Mommy got to hold me today as well and that was so much fun! I stared at her for a while and then fell asleep for a long time until mommy's arm got tired. Dad's turn is next and I hope that is very soon! My feedings were also increased this morning, which is a good sign that I am enjoying my milk. Other than that, TGIF!

Thursday, November 4, 2010

Thursday, Nov. 4, 2010


Morning everyone! I had a very good night and am continuing to get my PD therapy for my lung every 2 hours. Looks like it is working because my x-ray this morning showed some more improvement on my right side! I've been getting lots of rest in between my therapy but I've also been awake quite a bit so that I can look at my mom and dad and all the green lights on my machines! I've also been getting my milk since yesterday afternoon and they are going to increaes it little by little as long as I am doing well. Eventually I hope to start getting a bottle but they warned us that it may take me a while to learn how to eat on my own again. I am also being weaned off my morphine which is going well because I am such a tough little dude :)
My mom and dad told me they went to a support group last night and met some mommies of other "heart kids". They got to hear lots of encouraging stories and I think they really liked all of the other moms so they will probably be going to more of these meetings in the future! I also had visits from my friends Brooke and Sydney yesterday but I was so tired, I slept the whole time they were there - sorry ladies! My mom and dad are still reading me lots of stories and the three of us really appreciate all the wonderful books that our friends and family have brought us - they are all so special! Right now I am getting my Physical Therapy from my friend Rebecca. She is very good and so gentle that most of the time I sleep right through it! We don't have any more word on when I may be moving to the "step down" area and out of the ICU but I am doing my best to keep getting better so that will hopefully be very soon!

Wednesday, November 3, 2010

Wednesday, Oct. 3, 2010


I had a lot of visitors last night and I was on my best behavior! I met mommy's friends Hyatt and Sarah and then my Aunt Lizzie and Uncle Tommer came to see me! I had my eyes open and was looking at them trying to figure out who all the faces belonged to. I have also been staring quite a bit at the green lights on all of my machines which keeps me pretty entertained sometimes. This morning was already really busy, too. I have been getting my PD therapy every 2 hours to help reinflate my right lung but on rounds this morning my x-ray showed that it was still looking pretty bad, so they are going to keep going with my therapy and suctioning my nose and mouth (which I hate!) I had a visit from my Godfather, Uncle Brent this morning and it was so cool to see him in his police uniform! I also got my central lines out today which are cathaters that they put in my heart before my surgery to deliver my medications. Two of the three had broken so they had to remove them but I still have one to get all the stuff I need. They also did an ECCO of my heart to watch while they took the lines out and everything went great! But of course, a little bit later, I decided to be a stinker again and drop my lung pressure when my mom and dad left for breakfast. I managed to get it back up when the nurse turned me to lay on my stomach for the first time and I found out that I really like laying like that! The nurse got me a nice vibrating "egg" to put under my bed and it feels sooooo good. My mom and dad also finally got a full view of my crazy hairstyle that I have going on right now (but they reassure me that it will all grow back eventually). So my job today is to work on getting the gunk out of my lungs to reinflate my right side and then hopefully they'll start giving me my milk again - I'm hungry!

Tuesday, November 2, 2010

Tuesday, Nov.2, 2010 - 4 Weeks Old Today!


Wow, I can't believe I am already 4 weeks old! I am getting to be such a big guy already! I have still been sleeping a lot since yesterday but unfortunately I have hit a few speed bumps today. I was doing really well breathing on my own since they removed my breathing tube, but this morning my oxygen saturations began dropping so they strapped a nasal canula on me to deliver a bit more oxygen through my nose. The radiologists also saw a small air pocket in my belly again so they stopped my milk to make sure everything is ok. I got my cathater out yesterday (yay), so I am a little slow to pee but I sure don't want that thing back in! They also started me back on PD therapy because the right lobe of my lung is a little collapsed and I am pretty congested with gunk. Mom and dad think I am being a stinker after giving them 2 easy days, but I swear I am doing my best to cooperate and get better! I am going to work on my breathing and hopefully I'll get my milk back soon! Later!

Monday, November 1, 2010

Monday, Nov. 1, 2010


I hope all of my munchkin friends had a great Halloween and got to eat lots of candy last night! I can't wait until it's my turn to go Trick or Treating!
I managed to get a few winks last night in between my fussing but I'm pretty "talkative" most of the time when I'm awake. My throat is still a little sore from my tube, so when I cough it makes me really unhappy :( I still am loving my pacifier if I can manage to keep it in my mouth, but it's pretty tough sometimes. I'm also continuing my milk through my feeding tube and the doctors say I am doing really well with it so they are going to start giving me a little more! My mom and dad are hoping that a full belly will make me a little more content, so they are crossing their fingers that the extra milk helps! My vitals are holding steady and my x-rays and blood work are all looking really good, too. The doctors are talking about weaning me off my blood pressure medicine today and they will continue to wean me off most of my other meds. Once I'm doing well and off of a lot of my medicines, that will eventually mean I can move over to the "step down" area on the floor and start getting ready to go home (although I will be sad to leave my nice corner room with a view!) My mom, dad and I still don't know how long that will take because we don't want to rush anything if I'm not ready, but we are all hoping that it is sooner rather than later. I also can't believe I am going to be one month old this Friday! I wonder if my mom and dad have something special planned for my big day?