Thursday, July 29, 2010

Its Been Awhile...

I haven't posted for awhile because my life has seemed like a whirlwind lately. We just had some amazing help leave and I am now pumping and decided to post quick. I am very excited that we had some friends and family come over to help us get things ready for the boys to come home. Yes I said the boys are coming home!!! (and we are sooo not ready, but that is besides the point)

Ok, let me back up a bit...

On Monday I walked into the unit and found my little man Max in a crib! The nurse then told me he took his last four feedings completely by bottle. By that time my head was spinning and all I heard was the doctor talking to me and saying something about car seats... I better get car seats, they are coming home soon! We actually just went last night in Duluth and purchased a crib, changing table, two car seats, double stroller and lots of other odds and ends. It was a little tricky finding the travel set we needed for car seats because of how small the boys are but we found one that will work!

Both of the boys are doing so well! Luke is coming from behind and is out doing his brother in feedings. He has been nursing like a champ! It makes me feel so proud and excited when they are nursing because it is something that I thought I never could do when they were born so early! Max is doing well too, but he just gets tired quicker when he nurses. He also has his own nursing technique. Instead of suck, swallow, breath... he prefers... suck, swallow, sleep! He has these little choking episodes where I have to sit him up, burp him, and usually he still forgets to breath and will have a spell and even turn blue enough to make me panic a little. They tell me he will grow out of it... hopefully soon!

Luke is on his way to a crib also. He is now 3 lbs 13 oz and hopefully will get enough meat on his bones soon to keep himself warm. Max is now up to 5 lbs 6.5 oz and looks so chubby! Really... he's chubby! One my favorite nurses nicknamed him Buddha, because of his belly and then Luke is Lizard... because of his crazy tongue must help him be such a good eater all of a sudden!

They both are so sweet though and I am falling in love with them more and more everyday. I am nervous, of course, to take these little men home. The long car ride, the fact that they will have monitors, just knowing how different they are then just a full term infant. I know though, God does not give us a spirit of fear and I will just pray that he will give us the grace and wisdom to overcome all of these big and little obstacles. It really is amazing what prayer can do! I was just thinking the other day that I never reported that both of the boys' valves have closed! Praise God!!!

The temporary nursery. Next to our room now. They will move to the other nursery as soon as our master room is finished. Too far away now! This is what it looked like Tuesday...

Now it looks like this! Starting to put things together! Mr. Nate Yoder put that changing table together for the record... in case it falls apart! ha!

Dad putting the crib together!

The "real" nursery as of Tuesday...

Real nursery after Candy and Patti panted it tonight!

My nursery theme. Tree Top animals...
Still need to wash some of the bedding. So nice that Dawn and Amber came to help me get all of the clothes washed and organized... things cleaned, etc...

My sweet little men.

Luke --- Max

Max saying... "Watch out Luke, I'm number one!!"

Poor Luke just ate and was so sleepy.

Max in his big boy crib.

Now... the race is on to get ready. Not sure what day they are coming home for sure yet or if they will be coming home together, but this weekend will tell a lot!

Saturday, July 24, 2010

Wow... lots of fun!

So I am pretty excited about how my boys are doing! Both of them have taken at least one full bottle, and it is only their second day at attempting this new feat! They also have been pretty good at not having as many spells and are getting bigger and bigger... Max is just a little over 5 lbs!!! And Mr. Luke will not be completely out done, he is coming steady at 3 lbs 9.5 oz! I am just so happy that Luke is eating well too. Our biggest hurdle to go home at this point is to make sure they can take all of their feedings by breast or bottle. The nursing is going fairly well too, it is just harder to know if they are getting enough with that now!

So... I have some pictures to share! I am updating right now from a recliner in the NICU with Max in his isolette on my left and Luke on my right. Just about as good as it could get right now. Only thing better would be having my hubby here! :)

Grandma and Grandpa Randby. Grandpa holding his grandson for the first time (Max).

Grandma Candy with Luke for the first time.

Grandma with Luke, Grandpa with Max. (First time Joe held his grandson)

Both have thumbs up! Look close for Max!

Grandpa and Max's hands...
Grandpa Paul got to give Max a bottle... he took the whole thing!

Luke getting weighed.

Little Luke

Lookin' at Mom...

In the tub together!
Max --- Luke

Ooooo... this is nice!

Luke and his tongue!

Ta - Da! :)

Mmmm... kisses!

Luke, a little overwhelmed!

My favorite... wheeeee...... :)

Matching outfits!

Really, boys, this is fun! We are enjoying this!

MAX: nice Lukey, nice boy.

Luke lookin' for dinner! ha!

Max was sucking on Luke's head. Hard!

MAX: Mmmm, your head tastes good. Johnson & Johnson?
LUKE: Mmmmm, yup, on your hands too??

Ok, time to eat... or else Max will devour Luke before we know it!

Thursday, July 22, 2010

Lots of New News

So I have a lot to update from the last couple of days... so here it goes. We got all of Luke's test results back and his ultrasound looked normal. The doctor did give him a diuretic to try to flush out any extra fluids he was carrying and it seemed to work miracles. The doctor said it would help to extract any and all of his extra fluids, even from around his liver, lungs and other organs. It not only did that but it somehow also triggered him to poop and he had six poops throughout the day! Overall, it worked wonders for his little body and he has been more comfortable and his tummy has looked better ever since. I just think praying for wisdom for the doctors and healing for Luke was answered. Praise God!

We had a care conference with the doctor and other NICU personnel this morning and it went really well. It is amazing how far we have came since our last conference at two weeks! The doctor said that Max should be ready to go home in two to two and a half weeks! Seems surreal! All we need to master at this point is oral feedings. He has done really well with nursing (when he will wake up enough) and they are going to start introducing a bottle in the next few days. They also are going to get him to a crib very soon! The doctor said he is doing well overall and we are just on our way to following the normal discharge schedule.

Luke is right behind Max, only a few steps behind. Since he has had some problems with his feedings he is smaller, which prolongs him from moving forward into a crib, etc. BUT... it does not stop him from bottling and breastfeeding now. Thankfully the doctor gave me the go-ahead with Luke also to start really nursing (no need to pump prior). They are fairly certain Luke's troubles were not caused by breast milk AND... I am so, so excited to report that Luke nursed amazingly well this morning and yesterday. He does so good, almost better than Max and I think it is because he is much more alert and active compared to Max. Sometimes Max can just be such a big lug, and so hard to wake up! haha

I am still in shock in some ways. To really think that the time to bring them home has arrived. It is so surreal. (I know I already said that)! More than anything it is so strange to be able to really prepare for them to be here, with us, all the time. I never really let myself think that way because I would get very emotional with doubt that it might never happen, so emotionally speaking, I am still adjusting to this reality. I am thrilled though, really filled with joy and overflowing. But, terrified at the same time. We are not sure yet if they will come home on monitors or not, but we will see what the next few weeks look like. And I am more than anything looking forward to some quite bonding time with my little men at home!

Dr. Muskovitz did start to brief us on the routine and precautions of bringing home these babies. It is a bit overwhelming. I have a print out they gave me that I should copy down on here to share... but it is too long to do now. He just said that we need to be prepared to protect our children. He said, yes, we know they will get a cold someday, but the longer we can prolong that from happening the better. Their immune systems for the first year will be extremely sensitive along with their sensory systems so we will just need to be careful. He also mentioned they will get RSV shots for the first year; a nurse will visit our house every month to administer the shots. It was funny, he said that we could be very selective about where and when to bring our babies out, but he said be prepared to yell at the old people that go to pinch their cheeks... "Don't touch my premature baby!" Hahaha! People will think I am a crazy woman. I am praying about the whole transition home. Can't believe we are getting to that point!

Now, we just need to get prepared. Still need a crib, car seats, ect.... oh, and some organization! :) Caleb is working on the baby room as we speak. AND our only working shower has tile falling off the wall, as of the other day. The baby room took priority however, and there is duct tape covering holes of the shower walls. No joke! So funny!

Ready or not... here we come... Love, Luke & Max :)

Tuesday, July 20, 2010

Mr. Luke...

So last night Luke was having some more troubles. As fast as things go good they go bad sometimes. He was screaming at his 10:00 p.m. feeding as I was holding him which is very unlike Luke. He was so worked up, had some projectile vomiting and was just plain uncomfortable. I, of course, started to cry because it was killing me to know he was in such pain. Then, later in the night he had such a bad spell that he had to be bagged! Not good at this stage. Oh and he lost weight.

The nurse that was on today really sympathized with my feelings and actually took my observations to heart. She understood that I feel that something is really wrong. She had the doctor take a second look at him today and they drew new labs and ordered an ultrasound for tomorrow. He has moderate/severe anemia right now, but they are hesitating with a transfusion because a transfusion will just tell his body there is new blood there and not make him make more of his own. Also, the ultrasound is checking for pyloric stenosis... a condition I had a hunch about for a while now. Pyloric stenosis is a narrowing of the pylorus, the opening from the stomach into the small intestine. Pretty much he eats and can't get it out... his bowel is blocked. So we will see. Please pray for Luke. Poor little guy...

Oh, and kind of funny. Remember my graceful fall down the stairs about three weeks ago?? Well, I ended up with an avulsion fracture. SO... if you don't see me with my wedding ring on it's because the knuckle of my ring finger is HUGE! haha

I will have an update on Luke tomorrow as soon as I hear something...

Sunday, July 18, 2010

Great Weekend

We (Caleb and I) had such a great weekend with our boys. We went up on Friday night and spent time with them, hit a couple garage sales on Saturday morning, spent the night in Duluth Saturday again and got to spend LOTS of time with our little guys, and then celebrated Grandpa Joe's birthday at our house on Sunday afternoon. It was so nice to have everyone over to our place!

I have begun the daunting task of going through all of my baby stuff. I must say, THANK YOU, for all of the wonderful gifts we have received. It is so fun to go through them now and get ready for my boys to come home!! To be honest, I had a very hard time even looking at the baby stuff in my house after they were born. Things were so uncertain at that time and the future was hard to look forward to! Praise God for where we have came from and where we are now!

As far as when the boys can come home... we still don't really know. They are already two months old. Can you believe that!?! There are certain developmental things they have to hit in order to come home: breast/bottle feeding only (no tubes), keeping their own body temperatures in a crib, passing a car seat test, little/no apnea or breathing issues, pass eye exams, etc. It is possible that they could hit all of these things by 36 weeks (which is August 1st), but it could take longer. Not unlikely that it will take longer. So at this point I am thinking that they will be home sometime in August.

As of right now... they are doing really good! Luke is up to 28 ml/3 hours for feedings (Elecare still) and is 3 lbs 6 oz and Max is up to 40 ml/ 3 hours (breast milk) and is 4 lbs 7 oz. (30 ml = 1 oz). Both of them are still doing well breathing on their own. Luke got his IV out tonight so that means we can get some clothes on that boy again and they can start weening him down in his isolette (temperature).

Max... Look how big I am, holding my own pacifier!

Luke... in his cute doggy outfit!

My boys together ( Max - Luke)

Max crying... Luke just relaxing.

Caleb getting them ready for MORE pictures.



Caleb and Luke taking a nap :)

Grandma Candy and Max!!!! (she was holding him for the first time!)