Edwards had a very rough

Edwards had a very rough day with his o2 stats. Please continue to pray for him. its been a long day, were going to get some rest. More tomorrow

grr!

so David is still sick but I'm fine now I finally got to see Edward today but i wore gloves and a mask and didn't touch him which was really hard. he is still having problems with his o2 stats going up and down and his lung x-ray today was not as good as yesterdays. but the reason this blog is titled grr! is because when he go his PDA surgery they stapled him shut and never booked a follow up to take them out now they think the skin may have partially grown over them and tonight poor Edward has to get them taken out. they are giving him pain medicine but still I can't believe they forgot! how terrible! oh well that is my rant for the night... on the up side we had Edwards favorite nurse tonight Donna and even though I couldn't do his footprints (it is footprint Friday after all!) she did them for me and a really great hand print! OK well that's it for now I'm extremely exhausted so I will post the few pictures I took today in the morning... goodnight all!

~Misty

short and sweet

hey its misty sorry this will be a short post because i need to be in bed but I'm feeling alot better but now David is sick and the Ronald McDonald house manager found out and asked us to have him stay in a hotel over night which I'm sure I would have had to do if she had known i was sick so yeah 50 bucks we don't really have out the window but maybe this will prevent me from getting sick again. but enough about us you want to hear about Edward. His cultures came back today and no infections! hurray!!!! what an answer to prayer! they are starting him on some steroids for his lungs they say he will have chronic lung disease (I'm not sure what that means yet) so please pray about that. other than that he is doing well. sorry no pictures because I haven't seen him for 3 days :'( hopefully tomorrow.. they say i can come as long as I have no active symptoms (even so I plan on wearing gloves and a mask and not touching him. well that's it for tonight.. oh another quick prayer request I'm still struggling with my pumping and i could really use the prayers.

good night!
~Misty

Update 25 FEB 09

I want to start of by thanking everyone that has been posting comments, they have been very encouraging. Well Misty is feeling better today. We really haven't been testing her stomach out with anything beyond toast. She said today that getting sick may have been a blessing due to it forcing her to catch up on her rest. Dawn, my sister, flew in yesterday to visit for a few days. She has been a big encouragement as she is able to give us more insight into how the things Edward is dealing with is very much the normal roller coaster that preemies have to deal with. Dawn is a picu nurse in Chicago and often has to cover shifts in a nicu. We are also expecting Loyal (family friend that lives in CO) to be back out for a few days while he is off work.

Well Edward is still still being watched very closely, we are still awaiting the results of the cultures that they ordered yesterday. With out the results we won't know if he does in fact have a infection or phenomena but in the mean time they are still making sure that he is on antibiotics. to add item to this list of prayer requests, Edward isn't peeing as much as they would like. this adds just another thing they have to watch closely. They are having to keep checking the level of antibiotics in his blood and correct the amount they are giving him in accordance with the amount he already has in his blood stream. its a thin line between protecting from infection and damaging his little kidneys. On the good side of news he has made it to 600 grams sorry about 1.3 lb. I did get some pictures for you all today, Here is our tired little guy.

Rough day.

Well yet another rough day is behind us, we didn't get to see Edward much today, Misty woke up with morning with vomiting and diareahia Top 2 results shown it looks like Misty has some kind of bug, hopefully it is just the 24 hour bug that has been going around. So misty spent 10 hours today in the ER. She is feeling a little better now but until everything passes she won't be able to see Edward, which is going to be incredible hard for her.

also Edward is still having a rough time. his lungs are still wet and they are worried that him may be getting phenomena. they have started him on a broad antibiotic and ordered cultures which we should have the results back from tomorrow. the doctors are hoping that they got it in time due to the fact phenomena can be deadly if not resolved quickly. Tuesday was Edwards 2 week birthday and this roller coaster ride has started giving us loops again. Please pray that his lungs would dry up and that they would be stronger then before. Thank you all again for your thoughts, prayer, and comments.

David

New Update

Today has been a pretty rough day, Edward is still having a difficult time with his oxygen saturation, he is still bouncing around a lot. They also notice today his lungs are wetter then they would like and they have started measures to help dry them up. they are also starting to bat around how they are going to continue to supply Edward oxygen once the time comes to pull out his ventilator, due to Edward cleft lip and pallet they will not be able to supply him oxygen with the normal nose tubes or the over the nose cup. please start praying that they will be able to work out an effect way to provide the oxygen he will need to the later months of his NICU stay. on the good news side the obgyn here in Denver has set misty up with a visiting nurse that will come to her everyday to help clean and pack her c-section wound. It will be nice not to have to be the one cleaning and packing the wound, just because i won't have to be the one that puts misty through a lot of pain anymore. Well that is all for tonight I am sorry that don't have any pictures to upload this evening we didn't really get much of a chance today to take pictures. I will do my best to upload pictures tomorrow. We heard today that Michigan and China have been added to the list of where people are lifting Edward upto God in pray. Thank you all again for your continued pray, thoughts and support.

David

It Daddy's turn to blog again, this time i won't disappoint, I got two really cute Pictures for you but unfortunately mommy stole my favorite and uploaded it last night. Overall everything is going pretty well for the time being. Edward receive his forth blood transfusion last night and everything went very smoothly. They gave his veins in this arms and legs a break this time and just used a vain on his head. apparently the veins on these little preemies heads are some of the better veins to use. lol I was just worry that they would poke his brain, they reassured me that will not happen. The transfusions are just to help him out, he still isn't really making any of this own blood so they have to keep give him some so that they can continue taking blood test as needed. Edward is also having issues with is o2 saturation, for the past two days he has been bouncing around quite abit. They have also started Edward on a little bit of caffeine, they are hoping that it will help stimulate his desire to take breaths on this own while he sleeps. We have been pretty impressed with his breathing while he is awake and even more so when mommy is taking to him. now were just hoping that the caffeine will help when he isn't awake. We are also excited due to the fact that they are increasings the amount of milk he is receiving from 2 cc every 6 hours to 4 cc every 4 hour. Misty and I will also be back to our little family for awhile due to Misty's Father and step mother flying back home tomorrow morning. Well that about all I have for tonight we will have more tomorrow. oh I have been asked by several people for our mailing address while we are here at the Ronald McDonald house so here it is. "Ronald McDonald House Attention: Menkens, 932 Potomac Circle. Aurora, Co. 80011"

I also wanted to thank everyone for your thoughts, prayer, and Comments, they mean so much to us. It is incredible how many people all over the USA beyond are praying for us. I would really like to figure out how far our updates about our little Edward are spreading. We already know that we have supporters in IL,IN,OH,AS,MS,CO,WY and Australia. Please, if you are able comment and let us know that you are praying for him and us and where you are from, It really means a lot to us.

David

Little E

hello everyone! so today was a pretty good day atleast for mommy and daddy and grandma and grandpa Edwards because Edward had the top off his iceolette twice today which means we can give him lots of kisses! so at his 1 oclock cares Grandpa took his temperature and Grandma changed his diaper which was a fun one because it took about 10 min to get off all the poopy from his little butt..poor Edward. he also had to have his Tube reajusted so Grandma and Grandpa got a good view of his face and his cleft. I really think he is getting cuter and cuter everyday! our Day nurse today Anna says she thinks he has my eyes which makes me really happy! Anna also let me hold the feeding tube and feed him today for the first time which made me happy! tonight we had Donna again who is the nurse who wants to be his night primary (yay!!!!!!) she let david do the feeding this time which was really cool and I helped her weigh him which means I got to pick him up and I also helped her change his blankets. so overall today was a good day the only things that were concerning was his glucose was still not normal and right before David and I were leaving tonight he kept destating so please pray for his glucose and his little lungs. Also I just want to say thank you to all of you who are praying for our little angel it really means alot and it just blows me away how many people we don't even know are praying for him. thank you so much you will never know how much it means and how much you all have touched our lives. thank you!
God Bless,

Misty

Ps. Edward says Hi to Grandma and Grandpa Schwendeman, Grandma and Grandpa Menken, and Nina and Pepa <3


precious

grandpa and edward (look at how small Ed looks!)

hello again!

getting his tube fixed

Our nurse today Anna (the RT took this picture and anna was not amused!)

Ed's Cleft

Ed holding Grandpas Hand

Grandma Edwards changing Eds super poopy diaper

Grandpa Edwards taking Ed temp

he looks like his daddy!

hello every one its misty again and don't worry i have plenty of pictures to post! well anywho today was a pretty good day when we arrived this morning we had quite a surprise.. Edward's Ears where sticking out just like his daddy's do! it was so exciting! we also decided he has blue eyes (they are really hard to see because we can mostly see his puples but he was looking up and we saw some light blue just like mommy's eyes!) so some more news from today hmm lets see oh yeah his glucose is still kinda high but they are still working on it. On sunday they plan on starting to feed him somemore milk (yay!) they also think in a week or 2 they might be able to extabate him which means I will be able to hold him since the breathing tube is what is hindering me from doing that. oh and in the spirit of Friday night we got a little crazy we did somemore foot prints and a hand print (the hand print didnt turn out that well because he didnt want to coaporate) we also took some fashin pictures we put a preemie outfit on top of him just to see and it swallowed him whole it was crazy. we also got a really cute ohio state hat from someone at my parents church and i thought it looked pretty small..that was until we put it on him lol. then the nurse (who we love and has decided to be one of his primarys) went and got one of thier little shirts and put it on him so we had kind of a fashion show. so overall it was a really great night. well thats it for now i need to get some sleep love you all!
~Misty



fashion show!

stop bothering me!

hello! (my new favorite piture!)

foot printing!

hold my hand daddy!

precious!

go buckeyes!

burrito!

preemie outfit!

mommy and daddy's wedding rings!

daddy's ring!

edwards foot in daddy's hand.

proud parents!

daddy's ears!

you won't like me when im angry!

Daily Update

Well we all know that everyone loves mommy's updates more than daddy's just because mommy uploads more photos. lol, but mommy needed a break so its back to me. Things are going pretty well. We are kind of starting to get a little more settled in and or starting to get in to a routine. both misty and I are have now been staying at the Ronald McDonald house at night for a few nights. It was really hard for misty not to be at the hospital with Edward at night, but she calls and checks up on him so that easies her a bit. also misty Father and Step mother flow in last night late so we were able to see them this today, it was really nice to have company again, it really helps keep our minds a little bit distracted from everything going on.

Alright to the info that u really are here for. As Misty has told u all, Edward no longer has to wear his goggles due to the billy lights not being on which is really nice, we get to really see his face now. they have also started covering his incubator so it is nice and dark so that he feels more at home. unfortunately this is going to slightly limit the picture opportunities, don't worry we will still get more. also Edwards glucose level have been getting a little higher, which can be corrected but takes a lot more work to get thing where they need to be. Beyond that please continue prayer for Edward's Doctors and nurse, his lung development, and his over all well being. Things are looking good and with God's help hopefully he will continue improving. Thank you all again for all of your thoughts and prayers.

David

no more goggles!

mommy and Edward

all swaddled

tucked in

little angel

taking temp

beautiful

holding mommy's hand

proud momma!

poopy!

oh my!

ahh!!

precious

beautiful!

so yay! Edward got his billy lights turned off today! that means no more goggles and we get to see his face! it also means he gets to be swaddled! another awesome thing is he opened his other eye! now he can finally really see mommy and daddy! ooohhh and Edward had his first major poopy diaper I was so excited but David says it wont be that way for long lol. Another answer to prayer today was we finally got tricare to provide a breast pump so no more renting! well thats about it for now my parents are coming in tonight so we have some things to do before they get here! thank you all so much for all your prayers!

~misty

quick prayer request

please pray for me today because i am really struggling they went back on the whole letting me hold him thing and now it looks as if it will be a long time before I actually get to hold him. The Respiratory doctor is the one who made the decision because of Edwards Cleft they cant put a bar in his mouth to hold the tube in place so they don't want me to hold him because they are afraid his tube will move. I understand and i want what is best for Edward but I really wish they wouldn't have gotten my hopes up. I am really crushed and I feel like I'm never going to get to hold him and that he wont even know me when I do because it will be such a long time. sometimes I really feel like i can't handle all of this its way to overwhelming. anyway please keep me in your prayers i really need them right now.

~MISTY

Edward is 1 week old!

Happy One week Edward! wow this has been both the shortest and the longest week of my life.. if that makes any sense..lol anyway we had a pretty good day today. last night was the first night I (Misty) stayed at the ronald mcdonald house over night and man was it a struggle.. but i was proud of myself i only called to check on Edward twice and both times he was just fine. It is so hard for me to leave him even for something as important as sleep but I'm trying. anyway today started off pretty good we found out the results of Saturdays head x-ray and there is still no bleeding which is amazing :)! they also did an x-ray of his lungs and even though they are not great they are showing more volume. one of the crappy things that happened today was they had to fix Edwards breathing tube twice because it kept slipping which unfortunately because of his cleft lip and pallet is pretty hard to prevent. he also had his 3rd blood transfusion today which went OK and he is still off his blood pressure medicine. they also put in a PIC line which was a little upsetting to David and i because it was done by a student who blew 2 veins before the other doctor finally took over. David is going to talk to our case worker and find out if we have to let students work on Ed but it is a teaching hospital so I doubt we have any control. But back to the good things that happened today.. Edward got his Art line out which is a big deal! he also finally got to have some breast milk which made me cry and now i finally feel good when I'm pumping because I know he will be getting his nourishment's from me! They also told me that I might get to hold him but because he had gone through alot today they only let me pick him up but they think tomorrow i will actually get to hold him for real! wow today was exhausting! well anyway here are our prayer requests for today:
*Please pray for our emotions because we are feeling overwhelmed. me especially because they expect us to be here for around 6 months and so I really feel like I never going to be able to bring Edward home.
*that we will find a good church because that is something we really need right now.
well that's it for tonight we love you all!
~Misty

me "holding" him

alot less medicine!

feeding Edward his first milk

putting in the feeding tube

"oh dear"

no more art line!

hello!

not a happy camper!

i see you!

Edward getting his PIC line