3 Weeks/4 Months!

Wow, I can't believe how time flies! On the 23rd Luke turned 4 months old and as of today he is corrected to 3 weeks old. My baby is getting older :(
It has been hectic having him home, but I love it, Between doctor appointments, monitors, oxygen, feedings etc I don't have time to do anything else! Here is what has happened over the last few weeks...

The Tuesday after Luke came home he decided he didn't want to use his feeding tube anymore! He started nursing better and taking his bottles better! We were elated since the doctors were starting to talk about putting a g-tube in and we really didn't want that. I was nursing him constantly and giving him about 3-4 bottles per day. We took him to the doctor for a weight check 1 week later and he hadn't gained any weight (he hadn't lost either). So the doctor said he needs more bottles for the increased calories (we fortify my breast milk with formula to make it richer for him). So now, I only nurse him a few times a day and he gets bottles the rest of the time, which seems to be working because as of Monday he was 10 lbs!!! So the feeding tube is out and is staying out!!! I am continuing to pump so he gets my milk, but that is getting harder and harder to do during the day while taking care of him (and myself), so we will see how much longer I do this. I don't want to quit because I know eventually he will be like any other baby and will be able to nurse exclusively, but I am not sure if I can make it that long :(

We have also had to deal with acid reflux with him. We were hoping it would get better once the feeding tube was out, but it didn't. After trying to make his milk thicker by adding rice cereal with no success, I finally went to the doctor and ordered them to fix him. He would cry for hours after every feeding and looked miserable. I couldn't take it anymore! They started him on Zantac on Monday and so far, it seems to be helping. He is sleeping better and eating better.

Matt and I have decided he is colicy as well. From the early evening until we can finally get him to go to sleep his is screaming. Nothing seems to help. We rock him, bounce him, everything and he continues to cry. Thanks to some suggestions from friends on FaceBook, I tried gripe water and a miracle blanket and they seem to help him sleep better. His sleeping is a work in progress. Usually he only gets up once in the middle of the night :) Last night I was pleasantly surprised when I woke up at 7 am and he was just waking up! (he went to sleep around midnight) When we first came home he slept in the bassinet next to our bed and we quickly learned that that wasn't going to work! Luke is very talkative (all the time) and Matt and I were getting no sleep! Now he sleeping in his crib in his room...such a big boy!

He is quickly growing out of his clothes...the newborn stuff barely fits and probably won't much longer. I have him in some of the 0-3 month clothes that I have and they seem to work fine for now.

Matt and I have a love/hate relationship with the apnea (not breathing) monitor Luke wears 24/7. We like that it will alert us if something is going on with him (especially since he sleeps in another room), but it has NEVER...I repeat NEVER gone off for something actually being wrong with Luke. He says he isn't breathing all the time when we can clearly hear him!!! Our favorite is the "loose lead" alarm (which just means the lead to sense his breathing/heart rate isn't touching his skin well enough), which without fail, will go off in the middle of the night while Luke is SOUND ASLEEP! We have to wake him up and undress him to fix it.......imagine my disgust. He is still on oxygen, but Matt and I constantly find it out of his nose and he does just fine. We have an appointment with the Pulmonologist (Lung doctor) on Monday and we are hoping we get to stop it soon. It is a hassle taking him anywhere with him in the carseat, a diaper bag, an apnea monitor, and an oxygen tank!

He seems to be developing right on track (or even a little ahead). He is now rolling over from his belly to his back and is doing really well with head control. He loves looking at our faces and his toys and will follow them if you move them!

We got some newborn pictures taken a couple of weeks ago and they should be back soon and I will post. Until then, these will have to do :)

His usually sleeps like this...frozen in time!

Luke and Grandpa!

Luke watching Purdue play basketball!

Trying to help Daddy out with that bottle

A face shot without the tubes! We were doing a switch and had to get a picture!

The video of Luke rolling over!

Milestones....

Okay, I have been bad again...but I have a good reason this time! Luke is home!!!! So I will relive the last two or so weeks....
On Monday February 27th I was sitting in Luke's room holding him before heading down to work when Dr. Boyle came to check on Luke. He asked how I felt about sending him home with his NG (nasogastric) tube. I told him that didn't bother me at all, I just wanted him home. He said okay, we will shoot for March 9th then....I freaked out!!!! I went to work, but seriously don't remember anything about that day because I was too busy day dreaming :)
Then on March 1st we celebrated Luke's 100th day in the NICU. The NICU staff throw a birthday party of sorts for the babies that are there 100 days. They decorated his room and sang to him and even bought him some presents! I knew how incredible these people were before, but....wow. In preparation for him going home, they also decided to circumcise him that day...I won't go into details but lets just say he did fine :) Here are some pictures from his 100 day party...

We love all our NICU friends!!!

They next week after his party was spent getting ready to go home! This involved a lot of testing. He had to have his normal newborn tests (hearing screen) which he passed. They did a test to see how much oxygen he would need to go home on, a car seat test to make sure he didn't have any issues while sitting upright in his car seat, and then the day before he went home we had to stay the night in the NICU with him to make sure we could care for him on our own :) All his testing went great! They decided he needed to be on 1/4 liter of oxygen (not that much), his eye test got MUCH better...they said the ROP is almost gone!!! Then came the day for us to stay the night. This was last Thursday. I had to work that day and again....don't even think I was there mentally :) Any down time I had was spent coordinating home health, setting up doctor appts, and making sure I had everything I needed for him to go home.
The night in the NICU with him went well in that we didn't have any real problems caring for him, but we did learn one thing...he is a talker! He can be sound asleep and making more noises then he does when he is awake! We were up bright and early at 7 am on Friday ready to go home! The doctors/nurse practioners rounded on him one more time and wrote the official discharge orders! After signing the appropriate paper work and hooking him up to the monitors and oxygen he will be on at home we were able to leave :)

Our Room :( 

Anytime I have a patient with a baby in this room, I will cry :( 

The long hallway that Matt and I walked down for months....

Luke's first home

All ready in his "going home" outfit that we bought when I was about 20 weeks pregnant...we thought he wouldn't fit, but he did!

The last board with his info for the day...notice the weight...CHUNK!

Stop taking pictures mom!!

Our happy family of 3 :)

In the car...moments after this I started to cry and did the whole way home!

Daddy not listening to Mommy when she said we could not get the car seat out in the garage because there wasn't enough space with his truck parked there....

2nd try....success!!

Crossing the threshold....

Welcome home Luke!!!! 

(He could care less)

The days since his homecoming have been uneventful :) We have a giant oxygen tank parked in our living room with tubing that stretches all over the house and we carry an apnea/brady monitor with us at all times. We had our first (of many) doctor appointments today with his pediatrician Dr. Champley. His weight was 8 lbs. 12 oz. (80%) and he was 20.5 inches (80%). He has some pretty bad acid reflux and constipation so we are trying some new things for that. In early April we will be seeing a couple more doctors...a Developmental Pediatrician, Opthamologist, First Steps, and a Pulmonologist. Geez....

Yesterday we took Luke on his first walk...again, he could have cared less! 

LOVE this outfit

Let me out!!!

I love the feel of the air :)

All together

Happy family :)

Luke with his sign that the grandparents got him :)

:)

One more picture.....This is the sign that was in our front yard when we got home. We have been laughing at the people who stop to look at it because you can see how puzzled they are...Born 11/23/11 and just now coming home :)

In the home stretch!!!

Luke is doing A.MA.ZING!!!! Everyone is so surprised at how well he is doing. Since my last post he has hit two major milestones....he got taken off his vapotherm and now is just on 1 liter of oxygen through his nose and  he is now breastfeeding!!!! The first day he got to was last Monday (1/30)...it was awesome! He knew exactly what he was supposed to do. He nurses better than I have seen most term babies nurse! We tried a bottle the next day and he didn't do so well with that. He has one problem....he is sooo eager to eat! He gets to sucking and sucking and then forgets to breathe! Everyone assures me that this will pass and he will coordinate his suck, swallow, breathe pattern soon.
We recently brought in his bouncy chair and he loves to sit in it. He just looks around and is taking it all in.

He has also graduated out of preemie clothes and is now in newborn! Today he is 36 weeks and 3 days and weighs 6 lbs 3.2 oz. He is a chunk!!

His eyes still seem to be his only problem. They haven't gotten any worse, but they also haven't gotten any better. We are still just taking it one week at a time.

Here are some pictures we have taken....enjoy!

He loves to sit and talk to daddy!

So tired....

Where's my food?!?!?

Sleepy baby....

Mommy's little monkey!

Hi Everyone!

Sorry

I know...I know...I know....been way too long since my last update. I don't even know where to begin....

Luke continues to amaze us everyday. We feel so blessed that he has done so well. Luke spent about three weeks on the ventilator and then they made the decision to take him off again and see how he did. He was ready, and he did awesome!!! At first they put him on a cpap machine and then a few hours later did some blood work to see how he was doing. The blood work showed he was being over-ventilated (the cpap was helping him breathe and then he was breathing on his own as well) so they switched him to something called Vapotherm.  That is basically just oxygen through a little tube in his nose. He has been doing fine with that!

His head ultrasounds and cardiac testing continue to be normal, however his last eye exam showed some changes from the previous one and they are going to start watching him more closely to make sure it doesn't progress into something worse.

He is still eating through a tube that goes in his nose and down to his stomach. I am still pumping and they give him my milk with some extra calories added to it. He takes 42 ml (about an ounce and a half) every 3 hours. He loves his food! Matt and I have been amazed at how quickly he is growing! He usually gains a couple of ounces every night. Sometimes he looses a little when he takes a really big poop, but that is normal. They continually try to wean down his Vapotherm and he tends to do well with that. The first time they tried was last week and at that exact same time he got a cold (my fault...I could't stay away from him when I was sick), so he didn't do so well and they had to increase his oxygen again. Since then his cold has gotten better and they decreased it again yesterday. If he keeps doing well, they will decrease it again the beginning of the week and then I will finally be able to nurse him!! I am so excited for this moment...I think it will actually make me feel more like a mom to be able to feed my baby!

Here are some quick stats, notes, etc on Luke:

He was two months old on Jan. 23rd, but corrected to 34 weeks and 3 days as of today.
He is quickly becoming the favorite in the NICU with the nurses arguing over who gets to take care of him!
He currently weighs 5 lbs 2 oz and is outgrowing his preemie clothes. The sleepers still work, but the onesies  and gowns are getting way too tight!
He is becoming a bit of a flirt...he loves to look at the nurses when they are doing things with him and give them a little smile :)
They now keep him in a sleep sack and just like before, he likes to break out of it (at least his arms). You can't contain this boy!
He loves his pacifier! The speech therapist comes to see him every once in awhile to check on him to make sure he is ready for feedings and she is always amazed at how well he sucks. We used to have to keep his pacifier in his mouth by holding it, but now he holds it in all on his own. That is something that he shouldn't be doing yet, but he does!!
He likes to poop and pee in his clothes, on the floor, in his crib, etc. Therefore I do a lot of laundry now!
He is discovering his voice now. While he doesn't cry much, when he does he wants you to know he is mad! He is very talkative and is constantly making noises!
He loves his baths!
He gets massages from the Occupational Therapist here and he loves those as well.
Dr. Hertz the head neonatologist here is in love with Luke and refers to him as his "little buddy"

Matt and I are continuing to do well. We are home now, but still spend the majority of our time at the hospital. I just started back to work and am getting back into the swing of things after being off for 6 months.  On my days off I come up to the hospital in the morning and then go back home around 2 pm to do some stuff around the house. Matt comes home about 4 pm and we both go back to the hospital until about 8 pm. We are nearing being finished with the nursery, I will post pics when it is done.

No word on when he gets to come home just yet. I don't think it will be very long though, he just needs to get off his oxygen and learn how to eat!

Well, that is all for now. I promise I will try to update more often! I was going to put some pictures on here, but there are many and most of them are on Facebook anyway!