Edward is a big boy!

hey! who turned out the lights?!?!

soo cute!

So today was a really good day! Edward made it over 4 pounds he is now 4 pounds 2 oz! they have also left his icolet open all day with the heat off to see if he is ready for an open crib and so far he has done really well! so we will see in the morning if he is ready! Edward is also doing well with feeding and took 10cc's today which is a little less than yesterday but he was really tired today because he had a blood draw and an eye exam right before he got to eat. by the way his eyes are looking OK they are still recovering and they will check them again in a week. well that's about it I will update more tomorrow!
~Misty

do you like my fuzzy hat?

sooo cute!

tired from a long morning

mommy feeding me!

mommy's first time feeding me!

Doing Really good.

Hello everyone, Edward is doing really well, We are really starting to see some big improvements. Today Edward continued attempting to bottle feed with a new type of bottle and a new position and did extremely well. He was able to get 15cc via the bottle and his full feed is only 33cc. also he is now 3 lb. and 15 oz. and has made the weight requirement to be move out of the Isolate and into a little crib/baby bucket. They are working on getting him weened off of he isolate by slowing dropping the maintained temperature to help him regulate his own temp. Once Edward can maintain is own temperature he will be able to be moved into his very own baby bucket. We are also seeing a good improvement on his oxygen needs. the doctors have again lowered the oxygen pressure flow down to 1.5 liters and Edward seems to be doing fine with the change. although we have been noticing that he often pulls out his own nose tube and stays pretty stable just breathing room air for up to about 10 min. This is really exciting to see due to the fact that before we get to bring him home he has to be able to breath nothing but room air for 45 min unassisted with out desating. Until now we didn't think we would ever be able to bring him home. I really want to thank all of you for all of you thoughts and prayers, they have really been a blessing.

David.
Bottle feeding

I'm not very happy.

My new talent.

yay for feeding!

So today Edward got his first bottle! They tried the haberman which is a special bottle for cleft babies he only got 3 cc's from the bottle so the put the rest in his feeding tube. tomorrow they are going to try a different kind of bottle so we will see if that works better. other than that he finally gained weight! he is now 3 pounds 14 oz! well that's it for tonight here are some pictures from today I will load the video tomorrow because it is taking forever and I am passing out!

~Misty



look at my cool outfit!

so handsome!

my first bottle

getting burped!

"Give me my food!"

"I'm trying to be patient!"

"ahh my paci!"

"look how big I am holding it by myself!"

my little pro

Quick update

Hello all, dad here, not a lot to report to night, over all Edward is doing really well. Today he wasn't as Grumpy as he was yesterday which is good. He is also doing amazingly on his need oxygen %. He has been down in the low and mid 20s since he went back on the nasal tube. We don't know if he is doing so well because of the steroids that he was on for this surgery or if he is just doing a lot better. I guess time with tell. Well that's it for tonight. Thank you all for your thoughts and prays.

David.

pictures!

so today was a very long day.. Edward was very angry all day so they finally gave him some Tylenol because they suspected that his throat was possibly sore from being intubated. well the Tylenol really worked and Edward finally calmed down alot. other than that the only news is that Edward didn't gain any weight again and he peed through 4 outfits since 5 o'clock this morning. OK well i need to get to bed so here are the pictures from the last few days. good night!
~Misty


mommy with Edward right before surgery
my little sunshine
I love you forever
Edward right after surgery
poor baby
on the vent:(
yay vent free again!
mommy and Edward right after he got extubated
right after his bath Edward is not amused
"hey give me that camera!"
"no really give me the camera we will see how you like your picture taken!"
Edwards face without anything on it
Edwards beautiful face
Edward in a bad mood
"you wanna fight?!?!"
so sleepy
im getting so big! do you like my preemie clothes?!
mommy trying to calm Edward

Finally happy
mommy loves her little boy!
poor Edward
I give up!

Hello everyone mommy here, Edward ha a really big day! it started off with me arguing with the doctors again about getting him extubated.. well I finally won and he is vent free as of 1025 this morning an is once again proving the doctors wrong! today he also started his full feeds again which is 30cc's every 3 hours and i think he is much happier now! tonight Edward got a much needed bath which he wasn't a big fan of but afterward i think he felt much better. well that's about it... another end to a very long but happy day (at least for me (Edward has been in a very sour mood)) well good night all, sorry no pictures again but as soon as the quarantine is over i promise to post tons!! sleep tight!

Misty

Not a lot to report.

Hello again, Dad here, I am updating again due to mommy wanting to stay at the hospital with Edward again tonight. Not a whole lot to report, Edward is doing well except for being stressed due to being intabated. Mom is very frustrated because the the Doctors said that they would aggressively work on getting him extabated so that he doesn't get lazy, but they just seem to keep pushing it back. Misty worried that Edward will lose a lot of his progress if he stays on the ventilator. Hopefully he will get off of it tomorrow morning. Well that about it for now. I am going to try to upload a few pictures that I have on my phone.

David.

Surgery went well.

Hello all, Edward surgery went really well. He is still really out of it, but he is slowly starting to come back around. The doctors tell us the hopefully the surgery will be the end of his eye problems but he is still at very high risk for all sort of eye problems. they are also working on weening him for the ventilator as soon as they are sure he's ready. Edward has made it to 4 lb but most likely due to water weight which he will lose in the next few days. sorry that there are no pictures the only way i am update tonight is via my mobile phone. which is because the ronald mcdonald houseis once again on quarantine due to the flu going around again, and misty's laptophas pretty much seen its last days. well that it for tonight, we keep you update on edward. Please pray that Edward would recover quicky and that God would just bless him with comepletely perfect vision.

David

surgery

So Edward had an Eye exam today and his ROP has gotten alot worse so now they are going to do surgery tomorrow so please pray for him I'm sorry I don't have alot to post tonight but I'm trying to go to bed early because his surgery is at 8:30am. I'm really worried because they have to reintubate him for the surgery and I really am hoping it doesn't take as long to get him off the vent. well that's about it David will be posting tomorrow because I am going to be staying at the hospital with Edward. good night all!

~Misty


Retinopathy of prematurity (ROP), previously known as retrolental fibroplasia (RLF), is a disease of the eye that affects prematurely born babies. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but may lead to blindness in serious cases. As such, all preterm babies are at risk for ROP, and very low birth weight is an additional risk factor. Both oxygen toxicity and relative hypoxia can contribute to the development of ROP.

Still doing good.

Hello all, Mister Edward is still growing and doing really well. They are starting to try to ween Edward off of his Isolate. once he is able to control his own body temp he will be able to be moved to what looks like a bassinet/bucket. Edward did have a little bit of a stressful day today. he had a photographer and reporter from a British paper come for a photo shoot and ask us some question. they are doing a article about the new method of that the hospital here is using to add calories to Mommy's milk to help Edward grow faster. we figured out that he is getting about 50 calories per lb. no wonder he is growing so fast. imagine if your were eating 50 calories per lb. you would gain a weight really quick too. well that's it for now. hopefully we will have some good new regarding his weening off of his Isolate soon.

David.

Woah, I guess I'm moving.

No quite what I signed up for.

Please no more pictures, don't you think I have had enjoy.

Mommy please make them stop.

Please.

Pretty please.