Happy Birthday to ME!!!!!
Current mood: Exhausted

Yep, that’s right, I’m here! I’m Lucian Kyler David Percival Hill! I was born at 22:22 today, Sunday, December 9th, 2007. I weighed 4lbs. 9oz. and measured 17 3/4″ long.

Minutes after my birth I was diagnosed with possible EA/TEF. I was taken immediately to the Newborn Intensive Care Unit at St. John’s Hospital in Springfield, IL.

I’ll find out more about everything tomorrow, right now I need all the rest I can get!

Monday, December 10, 2007

Monday Update 12-10-07 (DAY 1)
Current mood: Bummed

Last night was a long night for me, because I have had to undergo many tests, x-rays, and needles to find out exactly what my condition is. The doctors are pointing their fingers in the direction of Pure EA, a digestive defect that I was born with. I’m still undergoing many different tests to determine if there are going to be any other complications.

During the day I had a heart echo test done, along with many different tests from the blood work that the nurses did. No word yet on any tests.

Tuesday, December 11, 2007

Tuesday Update 12-11-07 (DAY 2)
Current mood: Strong

OK, so I’m starting to feel somewhat better and get use to this tube that’s always sticking down my throat! My heart echo test results came back today, and everything looks fine. My doctors came by and took more blood to be sent off to another state for a genetic test, but they don’t expect anything bad to come back from them. Today I’m also getting a kidney sonogram done to determine if there are any commonly related problems with my disorder. I’ve been peeing on a very regular basis, but no bowel movement quite yet, which really isn’t expected because I can’t use my tummy to digest.

I lost a little weight, about 2oz. overnight, but that’s normal.

My doctors are starting to have a better idea about my condition. My surgeon, Dr. Rogers, is pretty sure I have a Pure EA. You can find out more information about my condition on my home page and in the links.

They told mommy & daddy that they would like to get me into surgery by the end of this week or early next week, depending on how I feel and if all my test keep coming back normal.

Wednesday, December 12, 2007

Wednesday Update 12-12-07 (DAY 3)
Current mood: Annoyed

So my tests keep coming back normal. Kidneys work fine, which is very good for someone with my condition. Unfortunately, I have come down with a case of Jaundice, which is normal for babies like me. They said my Bili levels were slightly high at around 9.6. The doctor ordered up 24 hours under the lights to help clear this up. I lost a little more weight today, a little over two ounces, so I’m officially at 4lbs. 4.3oz.

Mommy & Daddy are always by my side, they get to do all the changing and take my temp every four hours. They are a really big help to all of the nurses. All of my “neighbors” though can sure be a pain. They are always crying, but not me, I’m cool, calm, and collected in my bio-dome!

Thursday, December 13, 2007

Thursday Update 12-13-07 (DAY 4)
Current mood: Anxious

Well today is my official due date, but as we all can see I made an early entrance. This morning my mommy and daddy talked to the doctors about a potential surgery tomorrow to place a g-tube in my tiny tummy so that I may start eating and using my tummy! This is very good news because I need to start using my tummy to grow and take mommy’s milk, which she is currently stocking up for me. Although I am scared and anxious, I know I need this surgery as quickly as possible so that we may start looking into fixing my esophageal atresia. Once I have a feeding tube in my tiny belly, the doctors can inject my with a non harmful dye that will light up my insides on an x-ray so they can determine how far of a gap there is between the upper and the lower atresias.

Only one test to look forward to today, they are taking a sonogram of my head to make sure the blood in my brain flows correctly. This is a standard procedure and is non-invasive.

All the surgery news came to us today because I’m doing much better. My Bili count for jaundice is down to around 8.7. And, I’ve gained a little weight!!! I’m officially up to 4lbs. 6.1oz.

So everything is looking good. All of my tests are coming back normal, my jaundice is clearing up, my weight is coming up, and I’m set for surgery tomorrow. I’m going to stay under the lights for another 24 hours to see if my jaundice levels come down even more.

Friday, December 14, 2007

Friday Update 12-14-07 (DAY 5)
Current mood: Anxious

Well today I’m for sure getting surgery. I just keep amazing the doctors and mommy & daddy. My jaundice levels are down in the safe zone of around 6.7, I gained a little more weight last night, now I’m up to 4lbs. 6.7oz., and my head sonogram came back normal, like we all knew it would My surgery is scheduled for 12:30 this afternoon. I’m spending all morning with mommy & daddy, and they are seeing to it that I am as comfortable as I can be. When the time comes I will let everyone know how the procedure goes.

Saturday, December 15, 2007

Saturday Update 12-15-07 (DAY 6)
Current Mood: Sore

After we typed yesterday, I had my surgery to place a g-tube in my tummy. It started a little later than scheduled, and took about an hour, but everything went good. The doctor said that my little tummy was collapsed some because I’ve never been able to use it, but he doesn’t think that I will have any initial problems starting to feed. I won’t be able to start doing that though for a couple more days. I can’t wait to feel sooo satisfied from real somewhat solid food. They will start me out on my mommy’s milk in a couple of days once I feel better and start to heal from my surgery.

I had a minor spell last night at about 6:20p.m. but I came right out of it on my own. I was just really tired from the anesthesia still, but I got over that through the night. I got to see my mommy & daddy as soon as I woke up today at about 12:30. I squeaked and tried my bestest moans while they kept by my side. I got to movin’ around some to. I was very excited to see them. So far all I’ve needed for my pain is some tiny Tylenol suppositories. Mommy and daddy stayed with me for about 2 1/2 hours until I fell quietly asleep. They aren’t going to do any tests or check my weight for a couple of days so to give me time to recover from my surgery yesterday.

Well I’m going to get more rest, I need all my little body can get.

Sunday, December 16, 2007

Sunday Update 12-16-07 (DAY 7)
Current mood: Awake

Today the doctor came in and said that we could start feeding through my G-tube!!! This is very good news, I can’t wait to start using my tummy. They started me out at 1mL/h an hour, so to give my tummy time to activate and stretch.

Doctor Rogers, my surgeon, also came in and is starting to stretch my esophagus. My suction tube that goes in my mouth only reached down 9cm when I was born. A normal baby will have their feeding tube inserted all the way to about 20cm or so, given the size of the baby. He made a little progress today, and my suction tube is at 10cm now! We expect it to take a few days in between cm, but now that I’m feeding through my tummy, time is on my side.

Not much else today, I’m feeling better and moving around a little more. Mommy & daddy spent most of their day up here with me. The nurses even got out a few toys for me to play with. After all of the stimulation and playing with mommy and daddy, I got to bed without a fuss.

Monday, December 17, 2007

Monday Update 12-17-07 (DAY
Current mood: Bouncy

Today my doctor came in early and wrote the order to start feeding me more milk. I’ve moved up to 2mL/h an hour, and my little tummy is taking it just fine. I had my first bowel movement too! Not enough to weigh, but enough to get excited about! They also weighed me last night, the first time since my surgery, and I’ve gained a little more weight. I’m up to 4lbs. 9.4oz.

Mommy & Daddy spent a lot of their time with me as they always do. I’m learning how to “stretch” when I wake up, and smile when I’m happy. I really don’t cry much, and I’m mostly content. After all of it they always stay until I get quietly to sleep.

Tuesday, December 18, 2007

Tuesday Update 12-18-07 (DAY 9)
Current mood: Chill

Not much to say for my Update today. I spent most of the day chilling and being with mommy & daddy. The doctors raised my milk feeding again, so I’m now up to 3mL/h. I’ve gotten news from my doctor that he doesn’t want me to go home until I’m all fixed up and healed. Unfortunately, this may take a month or two, but the doctors want to make sure that I have the best possible care 24 hours a day. I’m not sure when the doctor wants to do my next surgery, he’s taking it one day at a time with my esophagus.

My weight today was 4lbs. 10oz. so I’m packing on the pounds and the milk seems to be doing its job at keeping me full.

That’s about it for today, I’m resting good and not bugging the nurses at all.

Wednesday, December 19, 2007

Wednesday Update 12-19-07 (DAY 10)
Current mood: Refreshed

I MASSACERED A DIAPER TODAY!!!!! TOTALLY FILLED IT UP!!!!!! MY FIRST OFFICIAL ENOUGH TO WEIGH AND GET OVERLY EXCITED ABOUT POOP!

All day today I was doing very well. I got a new nurse that I really enjoy taking care of me. Mommy & Daddy spent most of their day up here as usual. Right before my last checkup of the day, I started to get really cranky, which, if you ask my mommy & daddy, I really don’t ever fuss. Mommy was cleaning my diaper, I had a nice skid mark in there like I hadn’t changed my drawers in a week, and as soon as she raised my legs up to wipe my underside, and I literally exploded. It was such a feeling of relief. After that there was no reason to fuss. I played with mommy & daddy for about an hour before they got me quietly asleep.

Also, today my feedings were raised to 4mL/h. When they weighed me, I was up to an awesome 4lbs. 11.9oz. So everything is looking on the up and up.

I still haven’t heard what the doctors say about my next surgery. I anticipate that when my feeding tube totally heals they will start looking at my lower atresia.

That’s it for today, keeping to myself, playing with mommy & daddy, and now hopefully filling a diaper every day for them to get excited about.

Thursday, December 20, 2007

Thursday Update 12-20-07 (DAY 11)
Current mood: Energetic

Today was another chill day. I’m starting to feel a lot better since my surgery and now that I’m taking real food. The surgeon doctor comes in every day to check my progress. He and his partner are very excited to see me pooping and feeding so well. I’ve gained more weight too, I’m up to 4lbs. 12.8oz. This is probably due to the fact that they have up’d my feedings to 5mL/h.

Mommy & Daddy do a great job of changing my dirty diapers & keeping me stimulated. Whenever they are here I’m usually very active until they help put me to sleep, as usual. I’m starting to play with toys too. I really like my music box and my mirror. They help keep me entertained and also help to put me to sleep.

I played so long today that I tired myself out. I got a good nap though, and woke up to see mommy & daddy standing over me, encouraging me to wake up and play so more. It is so much fun.

Friday, December 21, 2007

Friday Update 12-21-07 (DAY 12)
Current Mood: Lazy

Ahhh. Another day in the NICU. Another day of relaxing. Another day of pooping. Another day of healing. The doctors came in this morning, as they always do, and once again raised my feedings. I’m now at 6mL/h. I’m filling my diapers just as fast as mommy & daddy can put them on me. The doctors are so thrilled that my lower intestines are working so great. I’ve also gained more weight, I’m up to 4lbs. 14.8oz. My surgeon doctor is going on a short vacation for a week, but he reassured me that his partner will take care of everything and give him detailed daily updates. They spoke of doing my dye test sometime this coming up week. This is really good news because they will be able to see and determine how far my lower atresia comes up. They are still stretching my upper atresia every day, and I’m still at 10cm. They spoke to mommy & daddy about what they want to do about my esophagus. Their plan is to stretch everything until they are touching, so there will be no reason for it to tear once they stitch it up. In many other cases, doctors will take part of the stomach or even the large intestine to replace the gap, but not in my case. My surgeon said that this wasn’t an option, because the fail rate when doing it this way is significantly higher than just taking our time with stretching it out.

So that’s it for today. The usual play, poop, and snooze.

Saturday, December 22, 2007

Saturday Update 12-22-07 (DAY 13)
Current Mood: Happy

Wow. Today is another good day. My doctor came in this morning and once again raised my feedings up to now 7mL/h. I’ve been playing and pooping all day. Mommy & daddy stayed up here all day and played with me until I fell asleep. I overheard them talking before I fell asleep that my half brother and sister were not being too good and they had to go to see them. They came back though, and I was wide awake and ready to play and poop. In a short two hour period, I managed to fill my diaper three times! Oh and not to mention covering my mom with some tinkle. I’ve got no complaints right now. I’m feeling a lot better since my surgery, and I’m just waiting to see what the doctors want to do over the next week with the dye test and my spine sonogram on Monday. I didn’t gain any weight today, I’ve stayed right where I’m at. I’m sure if I didn’t fill all of those diapers that I could have been over 5lbs! Oh well, we’ll try again tomorrow.

Sunday, December 23, 2007

Sunday Update 12-23-07 (DAY 14)
Current Mood: Groggy

Going through the motions is slowly becoming easy. It’s been another good day. I’ve had my feedings raised again, to 8mL/h. I actually lost some weight too, I’m down to 4lbs. 13.8oz. Nothing to worry about, though. As usual, mommy & daddy have been with me every step of the day. They sure are doing such a good job with everything. I’m still filling diapers on a regular basis for them. Hopefully by the end of this coming week we will be able to get a better idea of everything that is coming up. I know that can be difficult though with the holiday this week, but we will see.

Monday, December 24, 2007

Monday Update 12-24-07 (DAY 15)
Current Mood: Lazy

My first Christmas Eve, and I’m starting to feel a little groggy. The doctors came in today as they always do and told me that my spinal sonogram is going to be postponed until next Monday. I guess the doctor that reads them is on vacation for the week, and will return next week to give the test. I’ve also been raised again on my feedings, up to 9mL/h. My poop is starting to firm up, and everything seems to be working just fine with my lower digestive system. I got back up on my weight just a little bit, back up to 4lbs. 14.6oz. I was a little crabby today, which really isn’t like me too much. I think it’s because the spit is really been pooling up in my throat today, and it is really thick. I hope I start to feel better for my first Christmas. I need all the rest I can get so I can start feeling better and play with mommy & daddy again.

Tuesday, December 25, 2007

Tuesday Update, 12-25-07 (DAY 16)
Current Mood: Sick

Well my first Christmas isn’t starting out so well. Late last night one of the nurses was concerned that my lungs were filling with fluid, and that I was coming down with pneumonia. After a few blood tests, it was confirmed that I have the beginning stages of aspiration pneumonia. The doctors worked quickly to get me on antibiotics and keep my airway clean. My feedings were supposed to get bumped up again, this time all the way to 11mL/h, but they instead knocked it down back to 8mL/h. I did however gain a couple of grams over the last day, and weigh in at 4lbs. 14.9oz. Mommy & daddy have been by my side all night tonight, but all I’m really interested in is sleeping and getting better. Hopefully tomorrow I will be less groggy and start feeling like myself again.

Wednesday, December 26, 2007

Wednesday Update, 12-26-07 (DAY 17)
Current Mood: Dazed

I feel a little better today! The doctors have been taking my blood every few hours to see if anything “grows” and nothing has. In other words, the antibiotics have stopped the pneumonia from filling my little lungs, and I’m starting to feel better. I’ve been a little more awake today than I have been, but I’m still sleeping most of the sickness away. What made me SOOO HAPPY today though is that my grandpa came up to visit me all by himself!!! You know, just the boys hanging out. Not long after he left mommy & daddy came up to visit. Although I was still trying to rest, I managed to squeak my eyes open just enough to see them smile. They stayed with me until I got back to sleep well after midnight into the next day. My doctors went ahead and put me back up to 9mL/h. on my feedings. I didn’t gain, or lose, for that matter, any weight today. I had to use all of my energy to stay as well as I could and try to get better so my doctors can continue with the process of stretching my tiny esophagus. All of the doctors get back from vacation next week and I’ll need to be ready for them!

Thursday, December 27, 2007

Thursday Update, 12-27-07 (DAY 18)
Current Mood: Better than Yesterday

Almost all of the fluid that was in my lungs over the holiday is dissipating. I’m still not at 100%, but I’m doing a lot better. I didn’t get to see my doctor today until late, but when I did, she raised my feedings to 11mL/h. The other GREAT NEWS: I’M OFFICIALLY OVER 5LBS!!! My weight tonight came in at 5lbs. 2.3oz. My mommy & daddy are really excited. This is another good sign that my digestive system is absorbing all of the right nutrients that my little body needs. Everything is starting to fall into place to make sure that everything else is going to happen as scheduled. As long as I can show that I can fight and that there is a strong will, I’ll be making more progress faster each day.

Friday, December 28, 2007

Friday Update 12-28-07 (DAY 19)
Current Mood: Annoyed

It’s been another long day here in the NICU. I’ve had a lot of thick spit building up in the back of my throat, and it’s caused my little heart to fluxuate quite a lot today. I’m feeling ok, but it just gets hard to breathe when it builds up so thick. The doctor came in and did the usual stretch today, and allowed my feedings to be raised to 12mL/h. I’m doing really good with my feedings, and I’m almost to the maximum allowed for babies my size. I weighed in at 5lbs. 4.2oz. So I’m doing pretty good there too. I’m excited about this next week coming up because that’s when a lot of the doctors get back and we get to start a lot more of my tests. I’ve been sleeping a lot too, but what baby doesn’t?

My pneumonia has settled as well, so much that it didn’t show up on my blood work today! Mommy & daddy came up as they always do, but I was so tuckered out that I didn’t get to see them much. I spent most of my time snoring away the rest of the day.

Saturday, December 29, 2007

Saturday Update, 12-29-07 (DAY 20)
Current Mood: Chill

While I was awake today, which wasn’t for very long, I got a really big surprise! My favorite nurse (whom unfortunately only works weekends), got me all dressed up in my very first outfit and I got put into a baby bouncer, which really helps with my spit clogging in my throat! The doctor also put in a smaller tube down there so I can’t work it out with my tongue so easily.

They kept me at my same feedings, and I lost a few grams, down to 5lbs, 3.7oz. but nothing at all to worry about. Well it’s back to sleep for me. I’m starting to do a lot better and still need all the sleep I can get!

Sunday, December 30, 2007

12-30-07 (DAY 21)
Current Mood: Silly

Not much going on today, just a cold and easy going Sunday.

Besides just hanging in the crib and being with mommy & daddy today, I’ve just kinda dozed in and out of sleep while they kept by my side. No tests or anything until next week. I have my spinal sonogram tomorrow morning, where they will take me to get pictures of my spine to make sure everything developed correctly. The way I go about moving around, I can assure you that there are no problems.

There was no major weight change to tell, just a few grams, but my feedings have changed quite a bit. Instead of getting a drip feeding constantly, now I’m going to be getting 24mL all at once, every few hours. This will help to stretch my little tummy better and quicker, and will help to feel that “full” feeling that I can’t wait to experience! It will also help to stretch my lower atresia up towards the upper atresia to help make my esophageal gap shorter.

Well I’m going to get some rest, I’ve got a long day ahead of me tomorrow! Hopefully the tests will bring good news to share with you all!

Monday, December 31, 2007

Monday Update, 12-31-07 (DAY 22)
Current Mood: Anxious

Today is going to be a very long day. This morning I’m going to have to go in for my spinal sonogram, and they decided to do my dye test as well today! I’m liking the fact that they are doing everything really quick! I didn’t anticipate having my dye test done for quite some time, but the doctors decided why wait?

I’m doing good with everything else, I didn’t gain or lose any major weight, and my feedings are still the same.

I’m keeping this short today because I’m getting ready to go up for my test, then get some sleep for the rest of the day so I can bring in the new year in style!

I’ll share all of my progress with you tomorrow!

Tuesday, January 1, 2008

Tuesday Update, 01-01-08 (DAY 23)
Current Mood: Happy

Happy New Year everyone! I hope your new year brings good news and joy! Mine has started off very well. I haven’t got the “official” results of my tests from yesterday, but here’s what I was told. My gap is probably about 5cm long, which if this is the case, that’s about average, and the reason I had my spinal sonogram is because there is a small dimple in my lower back, but that’s all they told me about that was the reason they wanted to give it to me, not the outcome of the test. So I guess we will have to wait for tomorrow until the “official-official” results come back from the doctor that is supposed to read and diagnose them. Sorry for my long and hard to understand sentences.

Mommy & daddy came up and spent a lot of the afternoon and most of the evening with me on my first new year’s day, and we all did our best to entertain each other. Also, I got to meet my big brother for the very first time!!!! He came in with grandma and spent a lot of time with me. Not much else, we are all just anxious to hear what the doctor has to say tomorrow.

My feedings have stayed the same today, still 24mL every three hours, and my weight too hasn’t changed but a few grams. Officially (I’m saying that a lot today), I’m at 5lbs. 4oz. So tomorrow brings more news to share, and I hope to have nothing but good things to tell, I’ll let you all know as soon as I do!

Wednesday, January 2, 2008

Wednesday Update 01-02-08 (DAY 24)
Current Mood: exhilarated

It’s getting better by the day! Mommy & Daddy came up early to hear what the doctors had to say about my dye test x-ray and my spinal sonogram.

My spinal sonogram came back normal, and my die test shows real promise about my atresias. My upper atresia, the one right below my throat, still only comes down to 10cm, but the lower atresia comes up rather far, past my diaphragm, which leaves the gap pretty small. The doctor went over the x-rays on the computer and said that the gap was, here we go again, “Officially” between 3cm and 4cm long. This is very good news, because the average gap is usually about 5cm. There still is no date set on getting out of here or for my surgery, but at least we now have a very good idea about how far we have to go to get everything working the way it should. My educated guess would be at least at 4 more weeks, but I still think I’m leaving it short.

With all of the good news that has come today, they also decided to raise my feedings to 36mL every three hours, still all at once. I’m still filling diapers on a regular basis. They also decided that I don’t need my Picc Line anymore, so as of right now I have no more IV sticking in me! Everything else is working well, too. So there you have it for today, we now have a much better idea about a lot of things. Hopefully I can tell you more at the beginning of the week about a schedule to repair my atresias.

Thursday January 3, 2008

Thursday Update, 01-03-08 (DAY 25)
Current Mood: Grateful

Ahhhh…. As I’ve said before, another day in the NICU. It’s getting better though, I’m making many new friends with my squeaks and moans, and I just love to have mommy & daddy here with me when I’m so awake. I’m starting to get my schedule down, Instead of being up all night and sleeping all day, I’m starting to flip that around and play all day and sleep all night. I spent the better part of the morning, about 5 straight hours of it, just taking in the sights and sounds of the NICU. After my 3 o’clock feeding, I got a nap in, pretty much for the rest of the afternoon and evening.

Again, I’m sorry, but not much to tell about my feedings, because they’ve stayed the same, still at 36mL every three hours. But as for gaining weight, I’m becoming a chunky monkey. I gained 4oz since yesterday, so I’m up to 5lbs. 8oz. Yeah! Beefcake!!! Chalk that up to the feedings, they’ve really started to fill me up and keep my little tummy full.

Well, back to dreamy dream land I go, with mommy & daddy by my side!

Friday, January 4, 2008

Friday Update 01-04-08 (DAY 26)
Current mood: Awake

As it is, I’ve been awake all morning. I’m really starting to get my schedule down about this sun up during the day and down at night thing. I spent, get this, the better part of six straight hours awake today, from about nine this morning till about 2 this afternoon. During that time I played with mommy & daddy, talked to some nurses, and fed all day. Tonight is going to be hard though, because I’m going to be so tired that I won’t be able to play.

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I’ve been doing really good with my feedings, and my weight since yesterday hasn’t changed much either, but that’s nothing to worry about.

Not much more to say except that I’ve been so active, which poops me out by the middle of the afternoon. I’ll keep you all posted as I do if anything changes, but for now it’s back to playing!!!

Saturday, January 5, 2008

Saturday Update 01-05-08 (DAY 27)
Current Mood: Alive

These days are starting to run together here. I’ve had so many good days in a row it’s hard to count. The weekends around here aren’t too exciting. But then again I’m doing as good as I can! Nothing new really from last night. Mommy & daddy came by today and spent the better part of it with me making sure all my needs are met. They get to hold me pretty much anytime now, and I just love falling asleep in their arms. The best part though is when they are feeding me.

I’m starting to learn that my voice is a voluntary action, and I’m starting to use it when I can, although it’s tough sometimes because of my suction tube. I’m also getting really good at focusing with my eyes and following mommy & daddy around with them. I can also move my head from side to side on my own too!!

My feedings are still the same today, and we expect them to stay the same until I grow a little more. The only thing different that I’ve heard about is the amount of calories I’m getting has increased, but not the actual volume of food. My weight has stayed about the same as well, still hovering around 5lbs. 8oz.

Not much on the weekends, I know. These next few weeks are going to be like this, because all of my big tests are pretty much done, so all that needs to be done now is stretching my upper atresia until it touches my lower atresia, then we will be able to have the corrective surgery. Their still up in the air about a set day, because these things don’t run on a schedule, but when the doctors had to guess, they said about 4 weeks. We’ll see, and I’ll let you all know as soon as I do!!!

Sunday January 6, 2008

Sunday Update 01-06-08 (DAY 28)
Current Mood: Exhausted

Oh man what a day this has been! I’m soooo tired from all the playing I’ve been doing with mommy & daddy! They keep me very entertained throughout the day, and I’m staying up for about 4 to 6 hours solid now, which leaves the rest of the day spent in dreamy dream land. The doctors came in pretty late today, and gave me the usual stretch of my esophagus. On the other hand, they’ve cancelled my labs, which means that I won’t be getting any more lab work or needles poked in me until I get closer to my surgery! I’m just that healthy!

Also because of all of the playing and moving around, I’ve lost a little bit of weight, just a few ounces, which puts me down to 5lbs. 5oz. Nothing as usual to worry about though, just chalk it up to me being so active lately. My feedings did get increased right along with the weight loss, to another 2mL/h, which puts that total at 38mL/h every three hours, all at once.

So, another active, great day along with the beautiful weather we’ve experienced! I hope to bring news of my surgery schedule to you all sometime this coming week, as I plan to see the surgeon doctor again soon!

Monday, January 7, 2008

Monday Update, 01-07-08 (DAY 29)
Current Mood: Giggly

As I do, I wake up around 9 or 10 in the morning, stay up to be held by mommy & daddy, get fed at around noon, then play again with them until I usually fall asleep sometime after 2 or 3. This is slowly becoming a regular routine for me. All of the attention I get is great!

I’m down on my weight a little bit again, only an ounce and my feedings stayed the same. It’s prolly a good thing though, I’m beginning to outgrow my diapers I’m becoming such a chunker butt!

Unfortunately, mommy & daddy had to go home at about 6 tonight to take care of big brother and sister. I guess they were taking advantage of the fact that mommy & daddy are gone all the time, and were giving grandma a hard time. They came back a little before midnight to make sure that I was all tucked in and good to go to sleep.

Tuesday, January 8, 2008

Tuesday Update 01-08-08 (DAY 30)
Current Mood: Aggravated

Since Sunday, the doctors have been using a bigger suction tube to make sure that my little airway is clear, but I’m not quite use to it yet. I had a pretty rough night last night after mommy & daddy left, and for a little bit this morning. They were using a littler tube, but I got too good with my tongue and could work it out of my throat on my own, so this one is a little more of a challenge for me. I do fine once it is in place.

I’m starting to pack the ounces back on; I’m back up to 5lbs. 6.3oz. My feedings have stayed the same as they were on Sunday.

I got to talk to the doctor today about my test results last week and my upcoming surgery. So here’s the scoop: My upper atresia, in a relaxed state, comes down 10cm. My lower atresia comes up past my diaphragm, but the length is unknown. Still, coming up past my diaphragm, it is a very good length. When the doctor stretches my upper atresia down, in an “extended” state, it goes down about another 2cm, so 12 cm total. So what the plan is, is to take me in next week, pending everything goes good this week with my stretching, and see if the two ends will come close to touching. The surgeon will go in through my mouth, with a firm but flexible tube, and stretch my upper atresia down, while at the same time, using an instrument that goes through my hole where my g-tube is to see if the lower atresia will stretch up, and see if the two will touch. If the two ends will touch, we will be very close to having my corrective surgery. It prolly will not happen that day, and the doctor doesn’t anticipate on doing it then, but it will be here within the next two to three weeks.

I hope I didn’t lose anyone with that gob of information. I know it can be hard to understand sometimes, and scary at the same time. There is a lot going on so very quickly, and we all want to get out of this place healthy.

As soon as I know solid details I will post them for you to see. Until then, I need to get use to this new tube and get some rest!

Wednesday, January 9, 2008

Wednesday Update 01-09-08 (DAY 31)
Current Mood: Upset

It just has not been a good couple of days. This bigger suction tube is really starting to get on my nerves. Oh, I almost forgot, happy one month to me!!!! Ok, anyways, I’m not getting use to this bigger tube very fast. I’ve had a hard time with thick secretions throughout the day and my little heart is just having a hard time keeping a steady beat. I’ve had a few vagal responses (The response includes a decrease in heart rate, blood pressure, a feeling of light- headedness (from the decreased blood pressure), and nausea. Vagal responses are caused by many things. They include suddenly getting up, pain, fear, excitement, immersion of the head in cold water, or stimulation of the coratid artery in the neck) today, a lot more than I’ve ever had. It gets really scary because I have a hard time breathing when it happens too and I turn a nasty blue color. It’s really no fun.

My feedings have stayed the same, and I put on a few grams last night.

Mommy & daddy spent a lot of time with me today. They are really helping me out whenever I have my vagal spells. Daddy has learned how to clear my throat at the first sign of blockage. Not all the nurses like it when daddy does that, because they say that he could irritate my little throat, but I say the hell with that! He can irritate my little throat anytime as long as he is saving my brain cells! And besides, when the nurses clear my throat, they shove another tube down there, for a total of two tubes, and cause just as much irritation. So let my daddy do it!

Thursday, January 10, 2008

Thursday Update 01-10-08 (DAY 32)
Current Mood: Content

So I’m starting to SLOWLY get use to the bigger tube. I’ve still had a few vagal’s today, but not the frequency of yesterday. I’m learning how to position my head the way I want to so that the tube doesn’t irritate me so much.

I could use my tongue to take the littler tube out of my mouth, and I’m getting stronger at doing the same with this one. It’s just a matter of positioning it the right way along with my head.

Mommy & daddy were up for a long time again today just to make sure that I am doing better with my bigger tube. I’ve gained another few ounces, enough to put me at 5lbs. 7.3oz. My feedings haven’t changed yet though.

So, not much for today. I’ve been sleeping a lot because of the hard work that the vagal response puts me through. Hopefully tomorrow I’ll have it down to where my tongue will be able to work it around my mouth and throat with ease.

Friday, January 11, 2008

Friday Update 01-11-08 (DAY 33)
Current Mood: Aggravated

It’s been another rough day today, as I’m not getting use to this bigger tube at all. To make the matter worse, in my opinion, the doctors decided it would be best placed down my nose, so that I can’t work it out with my tongue. So I’m stuck here with a tube the size of my finger down my nose.

It’s really been a hard day, I’ve had a lot of my vagal spells, and they have been pretty bad. Mommy & daddy are doing all they can to make sure that I’m doing well, but something is just not right. I’ve never vagaled like this before, I mean, it’s happened, but not as often or as bad.

My primary nurse is getting to take care of me tonight, so hopefully I’ll do much better. All these spells sure tucker me out. I’ll hope to bring you better news tomorrow, but for now it’s back to sleep for me.

Saturday, January 12, 2008

Saturday Update 01-12-08 (DAY 34)
Current Mood: Inquisitive

Who makes the rules around here? I mean, how come when there is a problem, people say, “hey, we’ll try this to see if it works” and then ignore the fact that their new bright “idea” just makes things worse. Do they not write these things down? Last week I was using a size 8 suction tube down my throat; I could move it around with my tongue, and sometimes work it out. My Vagal spells were EXTREMELY MILD. They would last around 10 to 15 seconds, with my vitals never going below 70 or so. So someone decides that a bigger tube, a size 10, will work better, suction more, and keep my airway cleaner. What a joke that turned out to be. When they first stuck the size 10 down my throat, I seemed to get worse, the tube just wasn’t sucking up like the smaller one. So when I decided to learn how to pull this one out, they decide it will be best down my nose. Nothing got better. I’ve had my worse vagal spells to date, and they are consistent, one right after another, and they are severe, lasting around 90 seconds, and dropping my vitals to near death levels. I’ve turned every ugly color of grey and blue you can stand to imagine. They’ve had to rush in multiple people to revive me. My vitals reached 5 today. 5. Let me say that again. MY VITAL SIGNS REACHED 5. That means that 95% of my oxygen wasn’t reaching anything. I was dying.

After doing this for a better part of the day, my primary nurse came in and asked mommy & daddy a bunch of questions about how they thought I was doing. We came to agreement that since mommy & daddy were there all day, and saw me more than anyone; they could give their opinion on what was working and what wasn’t. Immediately they said that damn bigger tube was making everything much worse, along with very few other things, but mostly the tube. So without question, they agreed that if we thought the smaller tube worked better, then that is what they will use.

MY OPINION: I CAN DEAL WITH A SORE THROAT, BUT THE LACK OF OXYGEN KILLS BRAIN CELLS. SO DO WHAT YOU WOULD DO FOR YOUR OWN CHILD. IF YOU HAD TO CHOOSE ONE OR THE OTHER: WOULD YOU WANT YOUR BABY TO HAVE A SORE THROAT OR BRAIN DAMAGE?

So anyways, my feedings got raised to 42mL every three hours, and I’m up just a bit on my weight.

I hope it’s a better night now that I got my old little tube back. I know we are going to be doing a lot of test next week to determine how far we have until my atresias touch. I will let you all know how those tests go as we hear about them. For now, it’s sleep. I’ve been up for the better part of 10 hours today because of my spells. I will bring word to you about how the doctors react to mommy & daddy giving their opinion with my care.

Sunday, January 13, 2008

Sunday Update 01-13-08 (DAY 35)
Current Mood: Drained

These past few days have been enough for anyone. It’s one battle after another with my tubes. Over the night my spells decreased some, but not enough to satisfy me, or mommy & daddy for that matter. We have all set up an appointment with all of the doctors to review how I’m doing. Although I don’t see the same nurse every day, my Neonatal Doctor and Primary Surgeon stay the same, but they rarely all get together to discuss what is happening outside of the paperwork. With all of the spells I’ve been having, one would think that highly paid doctors and surgeons would be able to communicate beyond paper and point out the potential problems before they arise. OR, Figure out what is causing a current problem. (i.e. what has changed that is causing the negative affect?) So tomorrow should be interesting. I’m leaving it at this for today, as I have much rest to catch up on.

Monday, January 14, 2008

Monday Update 01-14-08 (DAY 36)
Current Mood: Content

So the appointment with my doctors went totally my way this morning. Mommy & Daddy came in and played with me before the doctors came in. When they all entered, they were all so surprised to see me up and so alert after the horrible spells that I had been having. My Neonatal doctor and my Surgeon discussed, or rather, debated, on the pros and cons of the 8 French tube versus the 10 French. The battle was on.

Of course, the argument was simple; 8 French: Smaller tube, clogs easier; more attention needed to unclog; able to work out with tongue, needs to be watched closely; needs to be changed every 2 to 3 hours; Tolerable; Vagal spells rare, and mild. 10 French: Bigger tube, better/more suction, (better/more suction, easier to suck & attach to esophagus, causing Vagal Responses); cannot work out with tongue; not as tolerable as the 8 French; Vagal Spells are frequent and extreme.

So, in the end, my surgeon said that the nurses could use whatever tube they wanted, since, of course they were the ones taking care of me 24 hours a day, and not the surgeon. So the choice was easy, because everyone figured I do better with my 8 French tube.

My spells, by the way, have decreased again today. I’m still very tired from them, but I do feel much better, and my color shows it.

So after the discussion, Dr. Rogers, my surgeon, told us that I would be going in tomorrow morning to get an x-ray taken of my chest to see how far my atresias are apart. He is going to extend my upper atresia down and my lower atresia up and see the gap between the two. This is very exciting because I could be getting an official surgery date tomorrow if the two ends are close enough! I can’t wait to hear the news! I will let you all know as soon as I can!

Tuesday, January 15, 2008

Tuesday Update 01-15-08 (DAY 37)
Current Mood: Anxious

So this morning I went up early for my Upper GI. My surgeon, Dr. Rogers, took me to X-ray and stuck a tube down my throat and another tube up my belly through my G-tube hole. He stretched the two, trying to bring them as close together as possible. I tolerated the procedure very well. He also attached what is called a button, so now my tube disconnects between feedings. Shortly after I was back up to my usual spot in the NICU. The official results won’t be in until tomorrow, but he gave us an idea of about 2 to 3cm. So not much farther! This is actually pretty good news. Most babies see a gap that’s about 5cm.

Among other news, Mommy & daddy are going to be moving back home, because my brother & sister don’t know how to behave. There will be a few days in between my Journal posts, because of the lack of internet, but I assure you that daddy will get them up as soon as he can.

The doctor went ahead and scheduled my next Upper GI for two weeks, so hopefully I’ll be close enough to go straight into surgery! I think I can see the light at the end of the tunnel.

I’m still tolerating my feedings well, and my spells have continued to drop to pre 10 French levels. My weight is continuing to climb as well, I’m up to 5lbs. 12oz.

Like I said, Mommy & Daddy are leaving the Ronald McDonald House to go back home. They will still be visiting me every day, but will not be able to post new Journal entries every day, as well as pictures. Please be patient with us until there is a more stable means of internet.

Wednesday, January 16, 2008

Wednesday Update 01-16-08 (DAY 38)
Current Mood: Delighted

So I got my official results back from my Upper GI yesterday, and they are much better than the doctor thought! My gap is only a smidge bigger than 1cm!!! This is excellent! By the time my next Upper GI rolls around in a couple of weeks, I may be able to have surgery!!!! I’m so excited! Everything is moving so fast and it’s great!

Mommy & daddy spent their first night back at home last night, but said they didn’t get much sleep because they are so far away from me. I sure do miss the fact that they were so close, but I understand that Jordan & Lexi need them, too.

Now that everything has calmed down with my spells, the doctors have started to up my feedings again, up to 44mL every 3 hours. Also, I’ve grown in length! I’m up to 19″ long now!

So, everything is starting to level out. I hope I’m back on track with everything. Last week was killer on me.

Thursday, January 17, 2008

Thursday Update 01-17-08 (DAY 39)
Current Mood: Bored

So not much at all is going on now that we know how far I have to go with my gap. Staring at the ceiling, playing with Mommy & daddy, entertaining the neighbors when I can, that’s about all there is to do, which I guess is better than lab tests and want not.

Still doing good with my spells, I’ve not had a major one since last weekend. Everyone is very happy with my progress. If these spells were to continue much longer, it could have delayed my surgery, but it doesn’t look like that is going to be the case.

Friday, January 18, 2008

Friday Update 01-18-08 (DAY 40)
Current Mood: BLAH!

Thank goodness I sleep most of the day away, or I’d be nuts by now. Thank goodness for mommy & daddy too. They keep me occupied when I’m awake. The other hours would pass too slowly to even attempt to stay awake.

Saturday, January 19, 2008

Saturday Update 01-19-08 (DAY 41)
Current Mood: Speechless

Ok, really, I’m not doing this on purpose, there just really isn’t much to say.

Sunday, January 20, 2008

Sunday Update 01-20-08 (DAY 42)
Current Mood: Tired

Boy oh boy mommy & daddy sure did keep me up really late last night! We stayed up and played until about 2 in the morning. I’m so tired today that I slept the whole time they were here! There still isn’t much to say, other than my weight has been going up. My spells, when I have them are still mild, and I am usually able to work myself right out of them.

Monday, January 21, 2008

Monday Update 01-21-08 (DAY 43)
Current Mood: Cheesy

What else can I say? I’m the cutest there is. Pretty much everyone here has gotten to know me and take good care of me, save a few. I’m free to wear my own clothes, as long as my G-tube button can fit through. Mommy & daddy can hold me whenever I’m done eating now. That’s nice, because with my condition early on, the doctors wouldn’t let them hold me.

I’m just a happy little peanut. Grandma Hill comes up to see me often too. She spends a lot of her lunch breaks with me, because she works so close to the hospital. I’m always happy to see her, but I also like playing jokes on her, too.

Tuesday, January 22, 2008

Tuesday Update 01-22-08 (DAY 44)
Current Mood: Restless

I’m getting anxious about my Upper GI next week. The doctors have been watching me close to make sure everything is ok for next week. My feedings were raised again, to 46mL every 3 hours. As you can probably tell, I’ve also been gaining good weight. I’m right under 6lbs! As of right now, we are hearing either Monday or Wednesday for the Upper GI. The sooner, the better.

Wednesday, January 23, 2008

Wednesday Update 01-23-08 (DAY 45)
Current Mood: Anxious

I’ve been anxious more than once. We still don’t know when the Upper GI will be next week. Mommy & daddy came by as usual today, and helped with my lunch and dinner before they had to leave. I’m doing really good, just bored as usual, waiting to hear about any news on my procedure next week.

Thursday, January 24, 2008

Thursday Update 01-24-08 (DAY 46)
Current Mood: Excited

So, the tentative plan for my procedure next week is on Monday or Wednesday. I’ve heard this before, so I’m going to put my money on Wednesday.

Friday, January 25, 2008

Friday Update 01-25-08 (DAY 47)
Current Mood: Inquisitive

I was pondering today, because I can, and it’s just about all there is to do, about how much fun it will be to be at home with mommy, daddy, Jordan, & Lexi. This place is starting to become repetitious. I’m getting really good with my arms and my hands, so the nurses are almost forced to tie me down, which in the end is pretty funny. I know if I want my arms back that badly, all I have to do is fuss.

Saturday, January 26, 2008

(DAY 48)
Current Mood: Hopeful

So I’ve heard my Upper GI will be on Wednesday. See I told you so. This is great news. IF, and that’s a big IF, my gap is close enough, I COULD POSSIBLY go straight to surgery! I won’t bet on this, but it has been brought up by the doctor.

My feedings have been raised again, up to 50mL every 3 hours. The doctor anticipates that the raised feedings will help to stretch my lower atresia up towards my upper atresia. Let’s hope that his theory is correct. There is no harm in doing it, because I’m growing anyways, so I need more food.

Sunday, January 27, 2008

Sunday Update 01-27-08 (DAY 49)
Current Mood: Pokey

Lazy Sundays. ZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZzZz

Monday, January 28, 2008

Monday Update 01-28-08 (DAY 50)
Current Mood: Anxious

Yeah, another anxious mood. I’m having my 2^nd Upper GI on Wednesday. I hope everything goes ok. My blood count came back a little on the low side, so the doctors decided to give me a little blood. This is actually quite common, and would have probably been done anyways because of the chance of surgery soon. I’ll let you know how I take it tomorrow. I don’t know why but they put the blood transfusion catheter in my head!

Tuesday, January 29, 2008

Tuesday Update 01-29-08 (DAY 51)
Current Mood: Irritated

I guess the doctor had an emergency today with another baby, so my Upper GI has been postponed until further notice. I’m kind of irritated, because I was looking forward to the news that tomorrow would have brought. I guess it’s all for the best, I’ll let you know when it will be rescheduled for. I’m sure it will be before the end of the week.

Wednesday, January 30, 2008

Wednesday Update 01-30-08 (DAY 52)
Current Mood: Content

I’ve gotten word today that my Upper GI has been officially rescheduled for Friday. Mommy has come down with a case of the cold, and is resting at home trying to get better before anything major happens. I can’t wait to hear what news the procedure will bring. I will let you all know as soon as I can.

The internet issue has been resolved. The updates will be coming back daily, so please check back often. I’m sorry to anyone who has been looking and not found anything new for a couple of weeks.

Thursday, January 31, 2008

Thursday Update 01-31-08 (DAY 53)
Current Mood: Anxious

I’m supposed to get my second Upper GI tomorrow morning, to determine how much farther we have to go with my gap. Not much to say today, but for anyone wondering what my official weight is, I’m up to 6lbs. 3oz. My feedings are up to 50mL, still every three hours.

Friday, February 1, 2008

Friday Update 02-01-08 (DAY 54)
Current Mood: Not Very Happy

My Upper GI which was scheduled for this morning has been postponed yet again. I had a pretty rough night, and might be starting to come down with a little bug. As of right now, my Upper GI is being scheduled for next Tuesday, pending how I’m doing.

Saturday, February 2, 2008

Saturday Update 02-02-08 (DAY 55)
Current Mood: Groggy

I’m not feeling any better today, and I’ve come down with a bit of a cold. The doctors started me on some antibiotics in hopes to clear it up before it gets any worse. I’ve been getting groggy lately to, and I’m really congested. I hope this all clears up before my Upper GI next week. I need to be in good health because my surgery could be right around the corner!

Sunday, February 3, 2008

Sunday Update 02-03-08 (DAY 56)
Current Mood: Sleepy

It’s been hard for me to get very good sleep lately because of all the mucus that builds up in my pouch. When it starts to fill up, it’s like I have a big goober in my throat, but it just won’t clear out. So when I start to feel comfortable enough to fall asleep, the goober catches my airway and I wake up.

Imagine every breath you took was being hindered by a goober.

Imagine not being able to cough.

Imagine not being able to swallow.

</O:P>

Once my EA is fixed I know I some of these things will go away, and it will be easier to breathe. I just need to get as healthy as I can so that I can get this surgery behind me, and start the road to a normal life.

Monday, February 4, 2008

Monday Update 02-04-08 (DAY 57)
Current Mood: Not Very Happy At All

So, since I’m sick, the doctor came in today and ordered me to be given some blood. My Upper GI has yet again been postponed. Right now all that is important is my health. I have to be healthy enough to undergo these procedures. Right now that is not the case, so I need to get as much rest as I can.

Tuesday, February 5, 2008

Tuesday Update 02-05-08 (DAY 58)
Current Mood: Feeling Better

Last night was a good night. I actually got some sleep and am starting to feel a lot better. The doctor came in today and said if I’m doing good at the end of the week, that he will go ahead and do my surgery. I really hope I can get this over with. I want to be home by Easter!!! That’s a realistic goal, and is what I will work for.

My weight is up to 6lbs. 7oz. and is still coming on.

Wednesday, February 6, 2008

Wednesday Update 02-06-08 (DAY 59)
Current Mood: Chipper

I had another good night last night, and actually got some sleep again. My doctor says that as long as I keep improving that we will do my Upper GI procedure on Friday. Even though I’ve not been feeling so well, the doctor is still stretching my Upper atresia every day. Hopefully, since this has been put off for so long now, and he’s had some time to stretch it more than he would have, it will be close enough to go ahead and schedule my surgery.

Thursday, February 7, 2008

Thursday Update 02-07-08 (DAY 60)
Current Mood: Excited

Well I’m pretty much in the clear for tomorrow. There are no signs of the cold anymore, although I’m still very groggy and congested. I’ve had a few good days in a row, and I continue to improve. Tomorrow morning is a big step for me, since my atresias we’re so close to begin with, they should be almost to the point of touching now, which will make a difficult procedure in my surgery that much easier.

Friday, February 8, 2008

Friday Update 02-08-08 (DAY 61)
Current Mood: Ecstatic

Well, I had my 2^nd Upper GI today, took it like a champ, and the doctors told us that my gap is only about ½ cm apart! That is excellent news! Hopefully this is enough to get me a date for surgery! The doctor didn’t give an official day, but he said that he was going to try to make it within the next few weeks! So the end of the road is in sight! I might actually make my goal!

Saturday, February 9, 2008

Saturday Update 02-09-08 (DAY 62)
Current Mood: Happy, Happy, Happy, Joy, Joy, Joy!

So the doctor called last night and told us that the surgery was going to be next Tuesday. I can’t wait to get it over with and get on with recovery!

Sunday, February 10, 2008

Sunday Update 02-10-08 (DAY 63)
Current Mood: Concerned

So, since I’m scheduled for surgery, the doctors have been keeping an eye on my G-Tube site, because it is becoming very irritated. The nurses insist that it’s my clothes rubbing it, but there is a deeper problem here. I’ll let you know what they say about it in the morning.

Monday, February 11, 2008

Monday Update 02-11-08 (DAY 64)
Current Mood: Irritated

Well my surgery is looking more and more like it’s going to be rescheduled for further in the future because of my G-Tube site. They say it’s been leaking, and that stomach acid is eating away at my tender skin around my site. They have cultured the site to see if any bacteria or infection is growing. I’ll know later on today what the surgeon is going to do, because he hasn’t been by to see me yet today.

Tuesday, February 12, 2008

Tuesday Update 02-12-08 (DAY 65)
Current Mood: Disappointed

As I suspected, my surgery is being postponed. My surgeon came in to see me yesterday and doesn’t want to risk any infections at my G-Tube site getting in while I’m in surgery. They cultured the site yesterday, but nothing has come back as of right now. They started me on some more antibiotics just in case there is an infection. They are doing a little better job of managing my site as well, keeping it totally clean and free from clothing.

Since all of this has been happening, I do have a good note to add! I’m officially over the 7lbs. mark! I’m still gaining weight good and normally.

So the doctors and surgeon decided that my G-Tube has got to be left open at all times to give my tummy room after I’m done eating. They would pinch it off after an hour or so after I was finished, which cut off any room for food to go. So the food found its way out, at my G-Tube site. Since they are leaving it open now, I have space to “burp up” my food after I’ve eaten.

Hopefully they won’t wait long to reschedule my surgery.

Wednesday, February 13, 2008

Wednesday Update 02-13-08 (DAY 66)
Current Mood: A Little Better

Well, after reviewing my care plan with my nurses, and noticing that some nurses practice the same tasks differently, we had to take care to make sure that every nurse, no matter, practice the same techniques as the last shift did, and as the next shift will.

I’m doing good, and my site is looking better. My cultures they took the other day are yet to grow anything abnormal. So hopefully it was just a fluke. Hopefully everything is ok and I can have my surgery very soon. I’ll know more by the end of the week.

Thursday, February 14, 2008

Thursday Update 02-14-08 (DAY 67)
Current Mood: Tired

Well despite everything that has happened, I’m doing good and the culture is yet to grow anything. My site is looking a lot better than it did, and the doctor went ahead and rescheduled my surgery for next Tuesday. I’ve had a few spells over the past few days, probably due to how hard it is for me to breathe. All I need is surgery; it will help to fix all of the problems that I have. I know it will.

Friday, February 15, 2008

Friday Update 02-15-08 (DAY 68)
Current Mood: Feeling Good

Today had been a good day. I woke up early and was in a really good mood, and sounding a lot better. Grandma Hill came up to see me and spent all of her lunch hour with me. Mommy & daddy spent all afternoon with me. I was so tired after all of the playing with them. The doctor came in and talked to mommy & daddy about the procedure on Tuesday.

It’s set for 6:30 in the morning, and is expected to last a few hours. The doctor is going to make an incision on my upper back on the right side, find the two ends of my esophagus, and attach them together. After surgery, I will be put on a ventilator, and will be kept paralyzed for seven to ten days, so in hopes that my esophagus heals and I’m not able to move or fuss. This is very scary for mommy, daddy, and I.

Saturday, February 16, 2008

Saturday Update 02-16-08 (DAY 69)
Current Mood: Happy

I’m in such a good mood today because overnight my favorite nurse came back and got to take care of me! She is so nice. She got a lot of pictures with me in my cardinals outfits (GO CARDS!). Other than that I’m doing good. I had a good night and got some good sleep. My G-Tube site is starting to look better. Nothing bad ever came back in the cultures that they took at the beginning of the week and I’m still on antibiotics just in case anyways. I’m gearing up for surgery on Tuesday. I know I need this to survive and live a normal life. I know also that it is very scary.

Sunday, February 17, 2008

Sunday Update 02-17-08 (DAY 70)
Current Mood: Smiles

It’s been a pretty good day today. I’m still set for my surgery on Tuesday, which is good news. Nothing has come back to give any reason to put it off. I did have a spell today, but all I needed was to be suctioned out and I was fine after that. I’m becoming quite the little chunk, and I’m up to 7lbs. 10oz! Yeah, I know, I need to diet. Tomorrow is a big day for me. It should be my last day of having to suffer without a completely attached esophagus. I hope this to solve my problems with my spells, and go as smooth as possible. My doctor said it’s a complicated surgery, but I’m also a lot closer with my gap than a lot of other babies with my condition. Hopefully this will play to my benefit and give the doctors a little less stress while fixing me up.

Monday, February 18, 2008

Monday Update 02-18-08 (DAY 71)
Current Mood: Scared & Anxious

Today has been another good day for the most part. We are still a go for surgery tomorrow, and I’m pleased with that. Over the course of the next week or more I’ll be totally paralyzed after surgery. They will be making an incision on my right back side, find the two ends of the esophagus, and attach them together. Dr. Rogers thinks the procedure will take at least four to six hours. After that I will be on near complete automation; I’ll be hooked up to a ventilator that will be breathing for me, and as I mentioned, I’ll be paralyzed so that I will not be able to move and possibly tear or rip my attachment site. They will also keep me sedated and on pain medicine so that I don’t feel a thing.

Well, the Lucian of old is about to be made over. It’s been a long, hard road to here, but we have arrived. But this is only the start of everything. There is so much more than this that must be overcame. I’ll let you all know soon after surgery how everything went.

Tuesday, February 19, 2008

Tuesday Update 02-19-08 (DAY 72)
Current Mood: Terrified

Surgery Day

Well, I’ve had my surgery, this morning at about 8:00. Everything went good as pretty much could have, but, you know me, I had a few surprises for the doctor when he opened me up. So let’s start at the beginning.

It turns out, after all this time, that I did have a fistula growing from the bottom atresia up to my trachea. This changes the classification of my EA from Type A to Type C. Although there are 5 types of EA, each type has many different variances. My fistula attached to my trachea, but wasn’t a direct connection from my stomach to my lungs. The doctor explained that it looked like the fistula was supposed to be my esophagus, but sometime early in my mommies pregnancy, blood flow stopped to that part of my esophagus, stopping it’s natural growth and development from that point. Even though it connected with my trachea, there still, somehow, was no gas exchange between my stomach and lungs. In the end, this is a good thing. BUT. At the time, my doctor thought that my upper and lower atresia were closer than they actually were, so there is a little more tension than he thought there would be. In the end, he made the repair. With all of the new changes, the possibility of me needing extra surgeries goes up. I will suffer from acid reflux disease, but now it’s just going to be that much worse. He has already spoken of a similar surgery to a nissen, where they wrap my upper stomach around my lower esophagus to prevent acid from going up my esophagus. This will be sometime in the future; right now we are just concerned about my repair healing up.

After I came back from surgery, I was a little swollen from the procedure. They put a chest tube in to expel any air or fluid that may build up near my repair site.

As of right now I’m on a slew of drugs for pain and immobility. I’m not sure what the paralyzer is called, but I’m also on morphine for pain, dopamine for my heart, and IV fluids and lipids for nutrition. They are also keeping me sedated. I don’t want to be awake and paralyzed at the same time. I don’t want to be awake at all during my healing process.

So it’s been a long day, and it, in the end, went well. There is still such a long road ahead of us, but the hardest part is now being taken care of.

Wednesday, February 20, 2008

Wednesday Update 02-20-08 (DAY 73)
Current Mood: Cloud 9

The first 24 hours after surgery have been ok. There was some concern that my ventilator wasn’t positioned right when they put it in, but it was just a little clogged with mucus and spit, since I’m paralyzed, I can’t swallow. There was some fluid that had built up in my lungs, but all of that was sucked out this afternoon. The doctors don’t want me to do anything for myself, just lay here sedated and healing up. I’ll have to stay like this for at least a week, possibly more, depending on how I’m doing. My swelling went down just a bit, and I’m peeing good, which are all good signs. My blood gases are coming back good to, so the ventilator is working. It’s just a waiting game from here. Hopefully it goes by as quickly as possible.