Tuesday, June 15, 2010

A Note From Heaven :D

Hello Everyone and GOD Bless You all! I am writing what will probably be the very last entry into this blog; but one I just had to do! It's been a little over a month since I went home to be with my 'Father' and I gotta tell you - everything they say about this place is even better than you could ever imagine! I am great! I've met all kinds of my family; and Nicholas and I have been causing all kinds of monkey-business and mayhem up here ;) We have been keeping mom and dad real busy too hehe, but things are starting to settle down for them. I am going to turn the blog over to mom for one last word and then I am off to pick wildflowers in the meadow and catch some fireflies in a jar :) Thank you all again for all of the prayers and support you have bestowed upon our family!

It's really funny how the human mind works and mine especially, I go off in a million different directions all at once - kind of like I give directions lol So, I have spent the last month and two days thinking about all kinds of things and in between my video games :) I have been very moved by the support we have been blessed with. I felt compelled to make a final entry, and have been for a couple of days but been unable to put into words any and hopefully all of the thoughts I have. While I was "cleaning up" my profile page (I am ADDICTED to FB games for those who don't know ;) ) and the amount of prayers and thoughts directed toward us for the last few months have moved me. It is easy to see the people physically here or physically sending things but it is also easy to overlook just the peace and uplifting things that just a "I'm thinking about you" does for a person's spirit. I have been going on auto-pilot for the last couple of months and have not fully appreciated the enormity of the outpouring of love, support, prayers and thoughts and just how many lives our little angel touched. There were complete strangers wishing us well and I have had the gift of even corresponding with some of them and getting to know them. The power of GOD is truly amazing!
Steve and I are doing fine - we both have our good days and our bad days and some days it feels impossible to get out of bed; while others, sleep eludes and on those days you find it impossible to stop working - because there are ALWAYS things to be done...but we are coping and trying our best to just follow His lead because we know that He is taking us somewhere great! We cannot even begin to get a thank you to every single person who took time out of their day, even if just seconds, to think of us and of Mister Rhys-ee; and for that we can be nothing but eternally grateful.

It is so comforting to know that when those days come that seem impassible that He has provided so many people to support and just love us; and that everyone He has sent our way may not even realize how very much it means and helps us. There are times when we are lost and do not know how to communicate the need to feel that support and at times we have seemed distant or like we are not wanting to talk - but know that it comes from honestly not knowing what to do or how to feel. So many have said that they just cannot imagine the situation that we have been through and still continue to go through each day and the funny thing is, WE cannot imagine how it feels. We are taking each day one by one, and sometimes each hour minute by minute, and while the hurt that we feel is so incredibly sharp and the hole that sometimes seems to fill the very depths of our souls grows and brings us to our knees in tears and prayer - we are finding a way to make it through and we are surviving with more blessings than we ever could have ever imagined.

We miss Rhys with so much longing and love and while he would have been right around 3 weeks old and home keeping us up all night long and making us cranky, in the best case scenario, that just wasn't the intended path we were meant to take.

I have no answers for why and to sit and question His plan all day yields nothing but frustration, exhaustion and sorrow; I will continue on our 'day-by-day' plan and know that in the long run, at the end, this will all make sense and when I get to Heaven myself, I won't remember all of the sorrow and pain that I felt here. Isn't this just a speck of time in the scheme of Eternal Life?

Thank you all who have supported our family and we hope that GOD blesses you, just as he has blessed us!

Friday, May 14, 2010

Rhys' Baptism & Final Prayer

At least I have a good view now

Well yesterday was a big day. Brother Don, our pastor from the church, came down to baptize me. Then everyone took turns to hold me. After everyone held me I went back into my mom's arms again, which is my favorite. When mom was ready the wonderful doctor turn off my medicine and removed me from that annoying ventilator.

Brother Don said a prayer and mom and dad held me during my last few minutes. I know it's hard on everyone but I'm so much happier now not being in any more pain. On May 13th, 2010 at 6:25 PM CST I took my last breath and feel the loving hands of my heavenly father release me from my pain.

Dad is working on a video that he will share, but for now this is my last entry. I love each and everyone of you and can't wait to see you again.

Be strong and God Bless You!

Thursday, May 13, 2010

I'm about to be baptized as a servent of my heavenly Father before I go meet him soon.

Our Pastor, Brother Don, just got here to baptize me; which is great because I'm getting close. I'll be baptized by my parents of as a servant of the Church and my Heavenly Father.

Oh Heavenly father I am about to come meet you and I pray you help my parents to be strong and help me to go peacefully. This will be hard for all of us and I promise to keep a couple of seats up here warm for you till mom and dad get up here to be with me again.

I love you both so very much. I love my grandmas and grandpas, my aunts, my uncles and all these wonderful new friends I have meet along the way. I ask for prayers, no longer for me but for my brother and sister, Chase & Regan, to be strong with the news of my passing.

Bless you all for helping us all during this time. Without you all we would truly be lost!

God Bless! Amen

Wednesday, May 12, 2010

So I'm still not well

Mom and dad are still hopeful but I'm thinking it's about time for me to move on to meet my "Father" and wait for mom & dad. Pretty much I still have a capillary leak and been in renal failure for over a week. Usually kids my age in renal failure over a few days don't do so well.

Anyways I put up a few more videos so check out the video page to the right or better yet check out my dad's YouTube channel which might have more videos as it's hard for me to upload to YouTube and update the video page.

Love you all.

Monday, May 10, 2010

Mom gets to hold me!


So I'm not doing so good :(

The doctor just came in to talk to mom and dad. Pretty much I've been just hanging in there for quite some time now. Everything they try isn't helping. They have me on max doses of all my meds. The main problem is this capillary leak which is making me puffy and keeping any fluid from getting to my kidneys. The have pretty much tried everything but this last thing which is to lower all my other meds and give me Methylene Blue.

This med has been used for years to dye your pee blue so they can watch it's path through kidneys etc. It has also shown to temporarly and sometimes permently stop capilary leaks as it a vaso vasoconstrictor.

Mom is getting to hold me for a bit before they try this as it can cause me to become unstable etc. I'm really trying to get better but right now it's not looking so good. But I'm not giving up yet!!!!!!

Wednesday, May 5, 2010

Survived the flood...And Mom confuses me :)

Okay, first I have to say I'm sorry for taking so long to let you all know what's been going on here! They took me off of ECMO and my heart and lungs are working pretty good :) I'm still on the vent, but they were able to put me on more of a resting mode. I am still having a hard time keeping my blood pressure up all the time; but I sure am working on it. As of today, they took me off of my epinephrine and have weaned my vasopress also - so I am down to 2 blood pressure meds and the T3 & I seem to be holding my own :) This makes my mom pretty happy and my dad too. Grandma Terry keeps telling me to stop flirting with all the girls and focus on healing my heart - I don't know, I'm pretty darn cute...gotta start early :D
So, here I am not peeing again - but I keep telling them not to overload me! Do they want me to work on the blood pressure, peeing or healing my heart....what does a guy gotta do?
On another note, Nashville saw some of the worst flooding in it's history this past weekend. Almost the whole town was under water because of the rain and all the rivers. The nice couple that have helped mom & dad out, their whole house was under 4' of water and dad is going to go help them get stuff out tomorrow. I kept telling mom I wanted to go swimming - but the nurses wouldn't let me outta here! Mom told me all about the Opryland Hotel and the Grand Ole Opry and the Mall; the road they take home was all flooded too - so I got mom & dad all to myself this weekend! They stayed at the Ronald McDonald House and are SO thankful to have gotten in there! The basement of that house flooded too, so there is not a laundry room or game room at the moment - but all else there is great. Mom & Dad have met some really neat families all with kids that are sick like me (not necessarily the same thing - but kids in the hospital in common).
So for the time being, they have me on a peritoneal dialysis at the moment to help me get this fluid off and hopefully I will keep my blood pressure up through the night.
Well, mama is getting ready to go back to the Ronald McDonald House and I need my beauty sleep - so God Bless Everyone and hope you all have a blessed week!

Thursday, April 29, 2010

I'm off ECMO!!!!!!!

Well I've throwing a fit the last couple of days because I was sick of this ECMO machine! The doctor went back in to see what was going on with my heart and pulled me off ECMO to see what I could do. What did I do? I started working good on my own, duh!

They still have me on a blood pressure med since I'm still small but so far I'm doing well :)

Mom and dad are waiting to come in and see me once they have finished cleaning me up so I have to run so they can get in here. I'll update you a little later on.

Thank you all for the prayers, I can't tell you how much they have been helping.

Wednesday, April 28, 2010

Doing good, have ANOTHER procudre today.

I'm still doing good, making baby-steps everyday :) My awesome surgeon is going to open me back up today to clear some fluid from around my heart a little later today. Daddy finally got to come back up to see me today, thanks to one of the wonderful people he works with that gave him some money to help with all the expensive he was able to fill his gas tank and come up here :)

Well I'm going to get some rest before my procedure later. I'll update you later tonight :)

Sunday, April 25, 2010

Losing That Water Weight :)

Wow! What a week! So it started out a little hectic with all the procedures and stuff, but I gotta say, as of yesterday - I am doing my thing like a champ! :D
Yesterday the doctors decided it was time to start trying to wean me off of my ECMO machine because I am doing so very good. They got the flow down from 300 to 230 yesterday and today we have had to go back up a little; but that is because they are also pulling all kinds of fluid off of me too :) I like that, I don't look so much like a sumo wrestler any more :)They were also able to take me off of one of the blood pressure meds called dopamine completely; which I think is totally cool because that means I am doing more on my own. I have been holding pretty steady on the blood pressure - with some infusions of blood/platelets/plasma to help when it drops. Mom thinks I may be part vampire, hehe & even the ECMO tech said I sure do like my product lol.
So I am losing a lot of my fluid/water weight. Mom was so happy to see how skinny I am looking again! I will have her take a couple of pictures soon so you all can see...I am not so good at the self photo yet, my arms are too short!
I am waiting for dad to come up and see me. He took Chase and Regan to the zoo again and boy am I jealous! Mom told me if I hurry up and heal myself the doctors will have to let me go home! I know she is so ready to have me home so she can sing to me all the time and love on me and play with me - dad too! They can't wait for me to get better! So I guess I better keep going on this good path to healing up and then I can go to the zoo too!!!
Well, mom wants some more face time with me and she is getting a little bored watching me type so I am getting off the computer for now! Will update you all a little later, maybe tomorrow (as soon as I can get mom to give me back the Mac hehe) she told me no more facebook games while I'm in here - I have to focus on healing hehe

Friday, April 23, 2010

I Pooped and Other Baby Steps

Well, today is pretty good! I am just chillin here pretty sedated, but I decided to show mom my eyes 3 whole times today - which is pretty good because they have been so swollen I haven't been able to open them. Dad had to go home to pick up Chase and Regan for the weekend, but mom is staying until tomorrow sometime, so she can see them too :) I whispered in mom's ear to tell Chase & Regan that I loved and missed them bunches; but Chase doesn't believe it ;)
So yesterday I had a great day! They were pulling lots of fluid off until this morning, when I decided I just wasn't going to tolerate it as well. No biggie, I just wanted them to pay attention to some other stuff...like my feet. My color is good everywhere except my little feet, which are very red and have some yucky purple spots. They tried a vaso-constrictor to pump up my blood pressure and hopefully push the blood flow through my feet; but that did not work real good. So they are going to put some nitroglycerine gel on my feet tomorrow to hopefully force the blood veins open in my feet. The doctors are a little worried that I may have some tissue damage in my feet with not having proper blood flow there for several days. Other than that, I am looking awesome and the nurses tonight were jealous that I showed my eyes to mommy and not to them. Hehe, I like playing possum...it is fun :)
Other than the feet thing, and occasional dips in my blood pressure - I am improving like a champ! Yesterday was a real good day. I had only pooped 2 times since I was born (5 weeks ago! For those keeping track) and yesterday morning, I pooped the last of my meuconium and then I had two bowel movements last night. Hehe - the first one, I tagged the ECMO tech, Scotty - that's what he gets for wanting an "intervention" with me. Mom said no, but I decided to have to have the other procedure - but I got him back for mommy - I pooped on his hand while he was lifting me up to turn me :) He had on gloves, so no sweat for him, but the nurse said he looked like he had a tail. Then the nurse showed my mom that I pooped a little later while she was there. You would think I just became the President of the United States by the way she was carrying on!
Well, mom is beat and so am I, so I guess it is time for some shut eye. Talk to all of you later! Miss you daddy! Hug Chase and Regan for me :) Nite Y'All!

Thursday, April 22, 2010

So I had another procedure last night

During my echo yesterday they noticed that the hole in my heart they left open got bigger :( Since I've been having issues with my blood pressure staying constant they decided to open me back up and close off that hole. After that I was doing good! My color improved, my flow on the ECMO machine went down etc!

This morning I have had to go back up on my rates a bit and getting some red back in my color. This is all to be expected but they are going to do another echo to make sure the clamp closing that hole didn't come off. Besides that I'm doing pretty good and holding my own!!!!!!

Rhys Sleeping Rhys on ECMO
So Cute! ECMO Machine
ECMO Machine Rhys' Bed with Pics
Rhys in Bed Rhys' Door

Tuesday, April 20, 2010

OMG I look like the stay puft marshmallow man!

For everyone worried I am doing good and I am doing as expected. Basically my body is in shock from the surgeries so my capillaries are freaking out! Have you ever sprained your ankle and swollen up really bad? Basically whenever there is trauma to the capillaries the vanes start "leaking". I am simply "third spacing" which means I am loosing extracellular fluid from the vascular vanes to other body compartments making me extremely swollen. The down side to this is because I loose these fluids my blood pressure drops which apparently freaks them out.

I should start settling out soon with this and then the ECMO device will also act a slow dialysis and remove all these fluids from me the proper way :) Besides this I am doing pretty good. They have me on some pain meds so I'm pretty much sleeping. Personally I think they are keeping me asleep so I'll stop flirting with all the nurses (so dad you better get me some digits).

Mom and dad are back in their sleep room and they were good and had some dinner. I Don't have any new pics but here are some pics of outside and mom being silly :)

Monday, April 19, 2010

I'm hanging in there :D

Well I've been hooked up to this ECMO device for several hours now and I'm hanging in there. It's been nice to have some visitors! Of course my mom and dad are hear but also my Grandpa Dennis, Aunt Ginny, Uncle Jack and dad's boss' wife, Jody, have all been up to see me today :D Plus Grandma Terry, Grandpa Steve, Aunt Heather and TONS of people who can't be here in person at the moment are constantly getting updates and sending their love.

I have to get off here soon as mom gave me serious instructions that I am to NOT be up monkeying around at 4am this morning ;)

Mom and dad got out of the hospital for awhile as Grandpa Dennis took them all out for dinner, lucky buggers.

I would like to take a moment away from me and ask you pray for one of my neighbors Shelby. She has be around 2 years old and went off for a heart transplant this evening. She is totally cute and beyond adorable so please take a moment to pray that God's Holy Spirit help guide the hands of her surgeons and be with her during recovery and bring peach to her family.

Well I'm doing ok so far but ready to be off all these flipping wires. If you want to see some new pics of me click the links below. Be warned I do have wires and tubes coming out of me which might be weird to some of you, but I still look good and I know I keep seeing some of the girls in my area checking me, muwahaha :D

Link to album

Pic 1
Pic 2
Pic 3
Pic 4
Pic 5

Well I had a very bad night :(

So mom and dad got a call around 4:30 am that I was not doing so good. They brought in my cardiac surgeon Dr. David Bichell, M.D., who is amazing, please click his name to read his bio. They had to open me back up to clear fluid around my heart and lungs. My stats kept dropping and this morning around 9am Dr. Bichell made the decision to put me on the Extracorporeal Membrane Oxygenation (ECMO) machine.

I have successfully been put on ECMO which basically will do the work of my lungs and for now my heart. My heart and lungs are still working but are not having the stress of powering the rest of me. This will allow my body to heal and get rid of acids that build up after surgery etc.

Mom and dad are pretty stressed and feeling lost at times so please help them out by continue to pray for me.

I love you all, thank you for everything!!!

Sunday, April 18, 2010

Out of surgery and recovering!!!

So apparently my surgery went pretty good! During my surgery they were able to repair my venus return from my right lung back to my heart and they were able to fix my Ventricular Septal Defect (VSD), which is basically a small hole between the chambers in my heart.

They thought I was going to have to be put on a Extracorporeal Membrane Oxygenation machine (ECMO), which is basically an artificial lung, but I did so well they didn't have to do that! I have two chest tubes, some wires for a pacemaker, which I haven't needed so far, a bunch of lines into my body for fluids and the really freaky part is my chest is still OPEN!!!!! Apparently after heart surgery sometimes they leave your chest open to give your heart and lungs some extra space so they don't get constricted. They sewed a sterile dressing and put some layers of stuff to kill any bacteria and stuff but it's still freaking weird. They said if there are no problems they should be able to close me up in a few days.

Now I have shared stories and some pictures of the NICU (Neonatal intensive-care unit) but the PICU (Pediatric intensive-care unit) is simply amazing. I have two nurses currently that never leave the room! I have so many machines hooked up to me I feel like I'm in the Matrix!

Mom and dad were so happy that their Pastor, Brother Don, came up and spend a couple of hours just talking and distracting them. Well I have sent mom and dad to the sleep room to get some rest so now that they aren't here to bug me I'm going to get some sleep. I thank and love you all for all your wonderful thoughts and prayers!

Here is a pic of me but it might be a bit weird if you get creeped out by wires and tubes coming out of me so please only click here if you really want to :)

So I went to surgery

I was suppose to have my heart surgery on Thursday but I started declining yesterday and by this morning they decided I needed my surgery now. They made the incision about and hour ago. They think it will take 6 hours but because this is a critical case they are taking their time. Mom, dad and grandpa Dennis are waiting in the waiting room, which is empty, I guess most surgeons play golf today.

Well I update you all later when I get more info. Thank you all!!!

Friday, April 16, 2010

Had my heart catheter

So yesterday I had my heart catheter, sorry for the delay in posting but the internet here has not been working. The good news is the doctors didn't see anything they were not expecting. I have my surgery to repair my right pulmonary return this coming Thursday!

The lasix's are working and losing some fluid weight, which is good to get rid of some of the fluid I have in my lungs. I am currently having my 7th blood transfusion to help up my hemotacrit (red blood count) level.

Wednesday, April 14, 2010

The Tape Monster

I'm going to make this quick this morning; as mom and dad still have a little bit to learn for me to really give you all the low down on what is going on. First though, mom is calling me the tape monster, because the nurses had to give me an IV in the top of my head, and because of all of my hair, they used a ton of tape on! Dad said it looks like I made myself a hat out of tape hehe.

I am up to 3 lbs. 15 oz! The nurse thinks I may hit 4 lbs by today...that would be totally cool...I am growing so fast and my little cheeks are getting fat :) They have moved my feeds up to 6cc's...and I get totally frisky after they feed me :)

Mom just called the nurse, and she says I have gotten a little upset with her a couple times this morning...but mom got to watch me throw a fit for a full hour yesterday. Hehe, just gotta let her know I have moxy! So, the doctors are still really unhappy with what they are seeing in my lungs, my little heart is just not moving the blood out real good, and I have been spitting up some foamy red stuff. They have decided that I am going to have a cardiac cath lab tomorrow. Apparently they will be putting a little camera into my femoral artery through my groin area (OUCH!) and will go up to my heart to look around. Then they are talking about doing my little heart surgery at the beginning of next week - which is about a week earlier than originally anticipated. I keep trying to tell mom that this is a good thing because I will heal faster and may even get to breathe better...which could potentially lead to me coming home quicker - but she is still worried. My mom is a worry wart!

On the bright side, my Grandpa Forcen is almost 48 hours past his big heart surgery - that will happen around 5 p.m. CST tonight & that makes me happy! The doctors in El Paso say that the most scary time after that is the first 48 hours, so I am sending up a little prayer for him today to make it through the rest of the day :) If you could send one too, we would all be so happy! I haven't met Grandpa Forcen yet, but I can't wait! Dad says he is really crafty and taught him all about building stuff and tools...what a guy! I figure we can talk hearts when I get out of here :)

Well, mom is going to get ready to come see me again, so I have to work on playing possum for now :) Will update everyone as soon as we know more....hope all are having a blessed week!

Monday, April 12, 2010

Busy Weekend...Busy Day

Dad and Mom had a super busy weekend, and so did I. I got to see Chase and Regan on Saturday & I got to meet my Papa. Then they all went to the zoo and mom told me all about the giraffes!
I had 2 transfusions this weekend, because my red blood count was just not going up enough. They held my feedings for a day and a half because when I get blood it makes my tummy upset. On the bright side, they have re-started my feedings and increased them from 2cc's to 4cc's, and I am gaining weight like crazy. Mom just called the nurse, and I am up to a whopping 3lbs. 12oz! :) I'll be breaking that 4lb. mark soon! I love getting to eat, I am not having bowel movements yet, but mom thinks that's because I have only been eating for a couple of days, and my little system is happy to have the nutrients.
I had lots of tests done today, they started out with an x-ray of my lungs - they saw quite a bit of yucky stuff in the right one - so they sent a lady from ultrasound to look at them too. She said there was definitely a lot of stuff in there, so they sent in a really nice guy to do an echo of my heart too. They also dialated my eyes this morning, so I wouldn't look at mom today - but they said my eyes look good and are developing just as they should. I also got to meet Brittany, a really nice lady from mom & dad's challenge bible group today. She was just amazed at how small and cute I was! Mom spent all day with me today and she read some more of the Book of Psalms to me - I think that helps to calm me down :) They turned down my ventilator tonight also - earlier today I was at 45% and when mom checked with my night nurse; they had turned it down to 25% and I am sleeping like a baby tonight - lol :)
My Grandpa Luis' angioplasty was unsuccessful :( He had a 5x bypass done today in El Paso; and at last report was in recovery and resting. It appears that everything went real good today, but we still need prayers for a speedy recovery.
Well, I'm off to have my sweet baby dreams now; the nurse said if I don't put the computer away and get some sleep - she's gonna tie my hands back :) So goodnight everyone....

Friday, April 9, 2010

Please pray for my grandpa

My Grandpa Forcen, which is my dad's step-dad is as I type having an angioplasty done. He went for a doctor visit yesterday since he wasn't doing good and his blood pressure was through the roof (last time I checked 180/125).

He is a great man, my dad says he was a great father, so please take a moment to pray for God to look after him and for God's Holy Spirit to magnify the wisdom of his doctors and surgeons to help him make a great recovery.

My hematocrit levels are down :(

Well my hematocrit (or red blood cells) are down so I'm having another transfusion. On a good note I'm getting my chest tube out!

Thursday, April 8, 2010

The Good, the Bad and the Ugly

So I had another esophagram today and they didn't see any leakage!!! I was able to eat a little today through my tube but...

Apparently they keeps getting mad at me breathing over 100 bpm for a few hours so they had to reintibate :( which stinks because I can't be held or kangaroo. I know in a few days I'll be all good again and get back to eating and being held.

My weight today is 3 lb 4.73 oz (1495 grams).

Tuesday, April 6, 2010

Doing good, mom and dad just came up

I'm doing good, well I am causing some problems as I start breating super fast, up to 110 to 120 breathes per minute. I do good on my belly so they have been keeping me that way most of the time.

Well going to spend some time with mom and dad and I'll talk to you all later.

3 lbs 4 oz

Still doing good! Not much of an update, I'm just hanging in there resting and healing up.

Can't wait for mom to come up! Dad had to go back to work and mom's car died so they are waiting to see what's wrong to get it fixed!

Love you mom and dad!

Sunday, April 4, 2010

Mommy getting to kangaroo me again!

Mom and dad came up after church to be with me on my first Easter! They brought me up a green bunny stuffed animal and some blankets so I can use my own instead of the hospital ones.

The nurses and doctors think I might be able to have my chest tube in a day or two. Then when my esophagus is done healing I can start eating!

Friday, April 2, 2010

Dad got to kangaroo me

Late last night dad was able to kangaroo me too!

Thursday, April 1, 2010

Mom gets to Kangaroo Me!!!!

Unfortunately I had a small leak when they tested my esophagus :( Looks like I have to wait a bit before I can eat, they want to give me more time to heal.

Mom got to kangaroo me, which basically means I got to lay on her skin-to-skin. Dad will get to do the same thing later tonight or in the morning.

New video of mom kangarooing me :)

New Video Page

New videos uploaded. On the right side bar will show the latest video but clicking the link to the video page will take you to all videos.

Video Page

Tuesday, March 30, 2010

Finally off the ventilator!!!!

Well I finally got off my ventilator! I still have my chest tube and a tiny tube down to my belly to suck up any fluid but I can breathe on my own!

Mom and dad came up and were so excited. My nurse, Sharon, let mom and dad hold me tonigt; which was great because they have not held me yet. Mom and dad kept giving me kisses and I don't think wanted to let me me go lol.

Well mom and dad are going to go sleep soon, they got a sleep room here at the hospital, so I'm going to say goodnight to them.

I'll give you an update sometime tomorrow morning.

Monday, March 29, 2010

Might get my breathing tube out tomorrow!

Well the doctor is thinking I might be able to get my breathing tube out tomorrow since I'm breathing so well on my own!

Sunday, March 28, 2010

What a long weekend

Mom, dad, my brother Chase and my sister Regan came up to see me for a bit on Saturday. Chase and Regan were super excited to meet me and can't wait for me to come home so they can play with me; however, Chase is not excited about helping to change my diapers lol.

I'm doing better each day! I'm completely off all pain meds, even Tylenol. They were able to take my arterial IV out of my leg today, so that feels better. Besides that I'm doing well.

Everyone had a hard weekend. Friday morning Dad went to check on the guinea pigs and discovered Angus had passed away. From looking online they have a life span of about 4-8 years and Angus was about 7 years old. Unfortunately Wolfgang is going to be lonely and we fear he is not far behind Angus. Chase took it pretty good but was sad.

Then Sunday night Chase's dog (which was dad's dog for 7 years), Gidget (Fox Terrier) passed away. Needless to say everyone is a bit emotionally exhausted.

On an up note mom and dad are coming up to see me in the morning. Dad made me a new graphic to decorate my wall! Talk to you all later.

Friday, March 26, 2010

I'm off my pain meds!

They took me off my pain meds and I'm doing good. I'm hoping being off these meds will help me start breathing more on my own.

Thursday, March 25, 2010

I decided to show mom my eyes today!

Well, mom came up and I decided to wake up a bit and show her my eyes. I'm so lucky to have such a beautiful mom!

So far my stats are doing good. They were able to take my bili lights off and hopefully I might get off this ventilator in a few days!

That's about all I got for now!

Great improvements

Quick update. My bili levels are up so I'm off the lights. I can now pee so my cath is out!!!Everything is looking and good and nurses have been taking such good care of me!

Wednesday, March 24, 2010

Doing good, had a tough night but doing ok

Well I don't want to be long as dad is home with Chase & Regan and I know he is swamped and won't have long to read this.

After my surgery some of my stats dropped, which is expected. I have had to have two blood transfusion due to some blood loss. I couldn't pee so I had a cath put in but peeing now :) I had some blood in my pee but that is to be expected. All the meds made it a bit harder for me to breathe so they turned up my ventilator but I am stable. Once the effects of the meds wear off I'll be back to normal.

Thank you all for your prayers, they are helping so much. I love you all and can't wait till meet you all once I'm out of here.

Tuesday, March 23, 2010

Everyone is finally resting

Well I'm all good! They fixed all my issues with my mouth not connected to my belly. Mom, dad and grandma Terry went home to get some rest.

They said they will get up later tomorrow. They keep wanting to stay here all the time but my big sister's (Regan) birthday was on Monday (she turned 4) and they need to spend some time with her and Chase, my big brother (7). They are going to do a small birthday party and then they'll be back tomorrow night.

I love you Chase & Regan! I can't wait to meet you. I know I'll be the little kid but I hope you'll still want to play with me and teach me to ride a bike and play catch.

Hi Ho Hi Ho off to recovery I got!!!!!

So the doctor just meet with daddy to let him know my surgery went great. It went so great indeed that they were able to reconnect my esophagus to my stomach all in one surgery! I'll write you all in a bit when I'm out of recovery and back up to my room.

Thank you all for your loving thoughts and prayers!

Hi Ho Hi Ho off to surgery I go!!!!

Well they just came and got me for surgery. They had some concerns about my heart, apparently I have what's called Anomalous Right Pulmonary Venous Return, but they are giving me special Anastasie to put me under. Mom, dad and grandma Terry are waiting in the waiting room worrying like crazy. If I had this stupid ventilator tube out I'd tell them to relax and that everything will be fine.

The great part is right before I went into the operating room they let my mom and dad give me a kiss for the first time. Well I'm off to sleep, I'll update you when I'm up!

My videos

Ok so dad got my first video up online. They will show up on the right side of the page and will add more in the future. If it doesn't work for you check back in a bit as apparently YouTube takes a bit to process videos.

Monday, March 22, 2010

The Lord is my protector, thank GOD!

Well trying to sleep...but if you have ever stayed in a hospital you know someone is always coming in to do something every time you just fall asleep.

Ok so apparently something is "off" with my heart and sometime in the future I'm going to have surgery to fix that too, which I don't think will be too big of a deal. On an up side, I'm suppose to have my first surgery to fix my TE Fistula in the morning. I can't wait for this to be fixed because I am starving for some real food, but we all know how great hospital food is ;)     (but mom's been stashing away some yummy food for me...hehe).

If you are reading this all I can ask is for you to pray; my mom, dad, grandparents and everyone are so worried. I know god is watching down and has a plan for all of us, but it is still scary. I know he has a plan for me too, which I can't wait to find out what that is, but selfishly I kinda want some time to know these people waking me up all the time calling me their "little angel".

Oh, while I'm going on about people bugging me, check this out. So I finally get comfortable; which if you have ever spent any time in a hospital, even just in the waiting room you know is absolute torture! So I FINALLY get comfortable and everyone keeps trying to move me. So I'm laying on my back getting my tan, with my legs crossed, which is super comfy, and they keep trying to turn me on my left side (something about trying to drain stuff out of my lungs). Evey time I sneak a peek out of this stupid mask I have to wear cuz of these bili lights and I think I'm in the clear I turn, and BAM they try turning me back on my side! Have they not heard of patient privacy!!! I mean I can't complain to much because my mom keeps reading to me which is very soothing (well I have been hearing her voice for months now which is relaxing.......least she isn't yelling at the dog).

Since I've been going to Church I can tell she is reading scriptures to me. Today she was reading the third book of Psalms chapters 73-77. I just so thankful she was doing that instead of dad (he is beyond tone deaf).

Well that's about it for now. I'm going to get some sleep since tomorrow is a big day. For my mom and dad, I just want to say thank you all so much for everything. Thank you to all our friends, our family and our church family for being so supportive! Also a big thanks for that special couple that visited me in the hospital and helped mom and dad stay so close to me by putting them up in a hotel. They keep telling me, so I want to tell you that they thank you more than they could ever possibly express in words or any other way.

Oh and Brother Don if you read this, please forgive them for sleeping in and not being there when you tried to visit. They where tired and finally convince them to get some sleep...apparently they decided to sleep in (not my idea).

Today might be my first surgery

Well mom, dad and grandma Terry got here a bit ago. I had my CT Angiogram of my heart earlier this morning. We are still waiting to see what that has to say and if I'll be cleared for surgery later.

They still got these bili lights on me, but my sun tan is going good :) Grandma Terry said I better move more or I'm going to get some nasty tan lines.

Well that's about it for now I guess. Oh they did say that all things considered I'm looking very good and strong!

Sunday, March 21, 2010

Maybe I go to surgery tomorrow

Well I think they are going to do a CT Angiogram tomorrow. Pretty much they say it takes x rays in multiple layers of my heart (it's pretty cool, click here to check it out).

If everything looks good I might go into surgery tomorrow. I'll keep ya'll posted!!!

So I'm still here at Vandy - Mom just got here!!!!!!!

Ok, well I fired my dad from writing because...well honestly he stinks at it.

I'm still chillin here under these darn bright lights. Apparently they are called Bili Lights to help me break down my bilirubin, which is just fancy talk for Jaundice. They said I was I border line on needing it but I guess they just wanted to make sure.

I'm still waiting for these doctors, least I think that's what they call them, to come in and tell mom and dad what is going on and their plans for my surgery. I think mom and dad are scared but I'm like "chick's dig scars"! Also by-the-way my mom's doctors finally let her out of the hospital to come see me. I love her being here but I'm trying to sleep and she just keeps talking and talking ;)

All the nurses, doctors and surgeons seem pretty cool. Maybe that's what I'll do when I'm big...their cars are freaking awesome! (oh and chick's also dig nice cars).

Well I'm going to try and catch some shuteye till the quack doctor gets here.

Saturday, March 20, 2010

Rhys is now 1 day old!!!!

Well I finally got some sleep, whew!!! I raced back to Vandy (Vanderbuilt) this morning to be here in time for when the doctor's do their rounds. Vandy is a teaching hospital so there is no shortage of doctor's around, which is great!!!

Rhys is doing good. The main doctor, who has been doing Neonatal for 20+ years, says he is doing very good and stable. They are running a bunch of tests today, including ultrasounds of his kidneys and spine to check for any problems.

They did a echo cardiogram, and ultrasound of his heart, and did see a problem with a vessel that has constant blood flow, at least I think that's the issue. With Rhys being so small it's hard to see everything clearly so they are working to recrunstruct all the x-rays and ultrasounds to get a better picture. They want to be sure and understand everything going on before they clear him for surgery to disconnect the attachment of his esophagus from his trachea.

Rhys is off to Vanderbilt!

So because of his Tracheo Esophageal Fistula (TEF) Rhys is being transported to Vanderbilt Children's Hospital Neonatal Intensive Care Unit which is one of the best. For Neonatal, according to US News, is 13th in the nation; however, I have seen other reports placing them much higher.

Friday, March 19, 2010

Some good news...some bad news...

Let's start with some good news.

We know Rhys was born premature, however, he is looking very good and stable. His red-blood count looks good, he is breathing on his own and alert.

Ok, now the bad news.

Rhys has a problem that affects even full-term babies which is called a Tracheo Esophageal Fistula (TEF or TE Fistula for short). Simply this is a communication between the trachea and esophagus. Basically his esophagus is connecting to his trachea which it should not be. We are not 100% sure at the moment what type it is but based on x-rays the doctors and surgens think it looks like this:

As you can see his esophagus is not connected and from his stomach it is attached to his treacha. Basically this prevents him from eating or swallowing. Apparently this develops somewhere between 4-6 weeks as an embryo. Another interesting fact is that this affects about 1 in every 1000-2000 births. Since there are about 11,000 births per-day in the United States about 2-9 percent of all children each day are born with this.

With technology today the survival rate of this from surgery can be as high as 100%!!! However, one thing to note is about 17-70% of cases of TEF are associated with other problems.

Now it's time to pray and be with our son as much as possible!

Rhys is Born!!!!!

So this morning Chrystal started hurting really bad around 5 am (CST). She tried a bath to relax but the pains kept coming and going. She called our doctor's office and one of the on-call doctors called back and told her to wait and call the office when they open at 8:30 am, remember that time by the way.

My mind is still a blur but I think we went into the emergency room at Middle Tennessee Medical Center (MTMC) around 7:00 am. Once we got up to labor & delivery one of the wonderful nurses checked her out. Well come to find out she was dilated 4 cm with a bulging bag (meaning her water was about to break). After that a rush of nurses & doctors came in and started preparing for surgery. Rhys was still being stubborn and was breach so she had to have a cesarean. We were very nervous as Chrystal was only 30.5 weeks along (37 is full-term).

At 8:45 am our beautify Rhys was born!

Remember the time? We were suppose to wait to call the office at 8:30 am to make an appointment to come in.

As soon as he came out I went with the nurses and doctor to the Neonatal Intensive Care Unit (NICU).

Stay tuned.....