June 28

Hello everyone, Not a whole lot to report. Edward is doing pretty good. Misty's Family is out here visiting which Edward really enjoy due to the fact that is almost always being held. Tomorrow he is getting his four month shots which we have unintentionally delayed. Edward really seems to enjoy walks and car rides so much so that he almost instantly falls asleep. Well I do have much more news for you but we update to when we do.

David

super quick update

Edward is doing slightly better but is still taciptnik (breathing fast) and retracting... over all a pretty good day! can't wait for tomorrow because family will be here and Kelli and Adam get to meet Little E for the first time! gotta get some rest so I can get up early and clean! good night all I will try and post some pictures tomorrow!
~Misty

home again

so Edward is home from the hospital again... I'm glad he is home but I don't think he was ready... I hate children's...hopefully we don't end up back there any time soon... oh and by the way Edward is 8 pounds 5 ounces! so crazy!!

~Misty

Update June 22

Lets see what do we have to report. We are still waiting on the results of Edward's Cultures which will determine how much longer we are here. He is doing a little bit better on this oxygen and is still gaining weight. He now weighs 8lb 3oz. His IV keep failing and they keep having to giving him new ones. they have had to stick him 11 time today just to get 2 Good IVs. Depending what the Cultures say they may just give Edward a pic line rather then keep having to give him new IVs every day. Well I think that's all I can think of right now. We will post more as we get more news.

David.

Quick update

Edward is stable but still at a 1/4 of a litter of Oxygen which is pretty high for him a here in Denver. We are defiantly not going home tomorrow and are still waiting to hear if he really does have an infection. The doctors have also order a swallow study to see if he is getting to fluid in his lungs when he is trying to bottle feed. We have been told that having fluid in his lungs maybe a very common thing due to him having Chronic lung disease. He now weighs 7lb. 14oz just 2 oz short of 8lb. We that's it for now, we will update you all when we get more news.

David.

were back..

So we took Edward to the ER last night because of his breathing. They ended up sending us back here to the NICU at Children's. we got here at 5 am by ambulance. Edward is way up on his oxygen. they did a chest x-ray and he has fluid in his lungs and a possible infection. we will be here till Sunday at least. please pray for Edward. Also please pray for me and David because it is really hard being back here :(
~Misty

::sigh::

so today was a busy day Edward had an appointment with WIC and then we went to go get our new pulse ox monitor from apria. then tonight Edward has started desating alot and we turned up his oxygen and now we might have to go to the ER which I do not want to do because they wont do anything! This is so frustrating!! I worry so much about Edward!!! I just wanna curl up in a ball and cry sometimes... but I just keep moving! keep us in your prayers! ~Misty

:)

so things are settling down here at the Menken household. Edward still only sleeps during the day (and maybe an hour or 2 at night) but we pretty have a good routine going. My mom (Toni) left today so we will see if we can handle things by ourselves. well Im sorry no pictures but I can't blog for long tonight because Edward is wanting my attention!
Good Night all!
~Misty

better

So things have calmed down here a little bit. Edward has his days and nights backwards :( though... It has been awesome having Toni here because it has given us a chance at a couple of naps the last few days. Toni has also helped us get some cleaning done and Edward has really taken to his Grandma! well not a whole lot to report... we had a little photo session tonight so I thought I would share some of the pictures! Good night all!
~Misty
"why did the chicken cross the road?"
his g-tube site is really red :'(
"why not take a bath"
all clean
looking spiffy!
helping with the oxygen
daddy time!
"yep I out rank my daddy!"
"hut 2, 3, 4..."
"word!"
chief master sergeant Menken
"rubber ducky your the one!"

Update from home 2

Hello all, dad here. Sorry we haven't been able to keep you all up to date on how things are here at home. As you all know bring a baby home is not the easiest thing in the world. But things are going ok. Last night was the best night so far sleep whys that is. Misty step mom flew out on Tuesday to help us. Edward is now 7lb. 5oz. he is really starting to look like a newborn. Today he had his follow up eye exam. So far everything looks pretty good but they still want to keep checking them at least until Edward is at least 50 weeks or 10 weeks corrected.

We are going to start doing our best to blog every few days rather then every night so that we can give our main attention to Edward. But will will still continue to update everyone as we get more news. Picture taking has taken a lower priority in the past days but I think we still have a few new one for all of you tonight. Please continue to keep Edward in your thoughts and prays as he still has some issues to over come. Also that we would be able to get enough rest to stay alive.

David.

Past out in his swing.

Past out in his rocker.

Hanging out on the floor.

ahh!

So we are Home. Sorry no update last night but it was one of the worst nights ever! Edward is not a big fan of "Home" all he does is scream. Last night we had to go to the ER because he kept desating and he screamed for an hour and a half straight! anyway it turns out his o2 tank wasn't working correctly so we got that problem fixed and we got a bunch more tanks today. in the end David and I got about an hour of sleep a piece. so needless to say last night was not so good! today has gone a little better Edward has donealot of sleeping today (of course!) and so David and I took turns taking a nap. oh well I think I might go crazy but my mom (Toni) is coming outtomorrow to help which is a big load off my shoulders... well that's it I need to try to sleep while I can... ~Misty

Ps. the pictures are in reverse order

mommy feeding Edward for the first time at home!
chillen in my swing!
the crying begins!
the calm before the storm!
so inocent!
daddy bringing Edward in the door!
asleep on the ride home from Denver
so tired! right before we left the hospital!
daddy taking good care of his little man!
car seat challenge!

Really quick update

Sorry everyone, no big update tonight. mommy is staying at the hospital with Edward tonight, and then we get to take him home tomorrow. We will have a photo post tomorrow for all of you. Everything is going really well and we are really excited that we get to bring him home tomorrow. It will be nice to get into routine even if we have to come back to Denver like once a week for appointments. Well I am really tired and have to get up early to clean and check out of our room at the Ronald McDonald House. So that it for tonight we will have more tomorrow.

David

another quick update

Sorry everyone, no photos tonight. I'm sure some of you will not be happy with me because of this but hopefully mom will have some for you tomorrow. Well today has been a very long day. The drove back this morning from home was pretty smooth. Today we meet with the company that will be delivering Edwards monthly G tube supplies. It looks like Insurance will be paying for some of his milk formula, which will be a incredible blessing. We also were able to finish all of the information movies that they require the parents to watch before they get to go home.(CPR, car seat safety, and home oxygen)

Well over all Edward has had a pretty good day. He past his car seat challenge (his Oxygen levels don't drop while he is in his car seat). He is now up to 6lb. 14oz.. He is huge to us. which is sad because he is still on the small end of full term new Born's. Edward has been extremely cranky today which is pretty odd for him he is normally very mellow. We think he just has a lot of gas build up in side his belly so hopefully by tomorrow he will have been able to push most of that out through the G tube when it venting. So it still looks like we are on track for going home on Monday. well that's it for tonight.

David

anxiety

so yeah I am having major anxiety! Today David and I came home to Cheyenne to get things ready for Edward and we ended up having too much to do so we ended up staying for the night and now I am freaking out because Edward is 2 hours away! anyway apparently he has had a really good day or so the nurse said over the phone! wow I am so glad he is coming home Monday because I won't have to be away from him anymore! well not alot to report because I was only at the hospital once today and that was this morning... I need to get to sleep because we have to leave here at 6 am because we have a meeting at the hospital at 8:30... good night all! ~Misty

good and bad news.

So alot of news to report tonight since there was only a brief update yesterday. So Edward has recovered from his surgery well. And we have had alot of specialists and doctors stop by to see him in the last 2 days. so yesterday he was seen by Audiology because he had failed 2 hearing tests. well we have some sad news 1st they defiantly found fluid in his right ear so that means he will eventually get ear tubes. second in his left he has nerve damage so that means he may have some hearing loss in that ear. next we meet the cleft palate nurse and the occupational therapist who works with the cleft clinic and also the physical therapist. today we met the Ear Nose and Throat surgeon and the social worker & case worker. But there is some good news in all of this and that is that Edward passed his room-air challenge (he went for 40 minutes without oxygen with out dropping his sats too low or dropping his heart rate. so that means we will be able to go home on Monday as long as nothing happens between now and then! so Edward will be going home on oxygen, a monitor, his g- tube, the pump that goes with it, and possibly a suction machine! so basically we will have a NICU in our house! The only sad thing about this is that we will be coming back to Denver one or two times every week to see different doctors! well that's about it I need some sleep David and I are going to Cheyenne tomorrow for a couple of hours to get things ready! good night all and thank you for all the prayers! GOD IS GREAT!

~Misty

Quick Post

Well Edward had an over all good day. Not a lot to report on. He is currently still on high flow and they are working on weening him down to low flow. Mommy will have a larger update tomorrow but I do have a few Pictures for you all tonight.

David.

Edward with one of his favorite nurses last full day at UCH.
But I don't want to leave.
maybe just a little bit happy.
Please no more pictures.

ok day

so today was an ok day Edward got an MRI this morning Sandi came to visit around 9. he got extubated around 1 then he got to start eating again at 5. and ENT (ear nose and throat) surgeon came and looked at Edwards cleft. then at 8 Carrie and Amanda (Carrie was Edwards day Primary at UCH and Amanda is another nurse who took care of him) came to visit!! well that's about it for today Edward had alot of ups and downs today so hopefully tomorrow will be a little better. oh and btw Edward is 6 pounds 10 ounces! well good night all sorry no pictures again but i only had 2 hours of sleep and I can barely function! good night all!
~MISTY

Surgery update

This has been a very long day to say the least. Thank God, All of Edward surgeries were successful and he did extremely well. He will remain on the ventilator at least until sometime tomorrow and more then likely longer. They have setup a mri to check his pituitary gland and a hearing check tomorrow morning. As I said it has been a very long day so we will have more new for all of you tomorrow.

David.