Decision

We have been busy! The fall season is upon us and Luke is getting back to his old sickly self. We made it 9 days into October before our first hospital visit. I think last year it was sooner than that. Way to go Luke! Wednesday morning I was awoken by Luke screaming and sounding awful because he was having trouble breathing. After trying various things here at home I decided enough was enough and rushed him to the nearest ER, which happened to be IU North. I broke several laws on the way there, so to any cops I passed...sorry. They took excellent care of him there. They diagnosed him with croup, and after 6 breathing treatments we were on our way home. He is doing much better now. He just sounds horribly congested in his sinuses. Matt is convinced he needs to "hock up a loogie" and has been trying to teach him how.....

I finally decided the new therapist wasn't a good match for us and made plans to have Luke evaluated at another place. Per our First Steps Physical Therapist Sharon's recommendation I called the pediatric rehab people with St. Vincent's. Luke's evaluation was today. I loved this place the moment I walked in! The lady I met with was super nice. She said she agreed that Luke needed more therapy and had many other suggestions. She wants him standing. This should help develop more muscles that he will can use now and later and also will help his spine (which is something I never thought of). She said kids who can't sit/stand can develop scoliosis from not being in the right position. The wheelchair topic came up again. At this point I think I am ready for Luke to get a wheelchair. I am trying not to think of it as the "end all be all" of his life and that far ahead, but instead as what will make him happy. She made many good points as to how a wheelchair will make him happier, and eventually keep him in line with his peers once starting preschool. For the standing, she wants to get him braces for his feet (he curls his toes and rotates his feet) and braces for his knees (to keep them straight), along with a "stander". I was ready.....lets go!
Then, insurance happened.
When trying to make the appointments necessary to get all this in order, I was informed by the lady that does all the scheduling/insurance stuff that per our insurance company, Luke had "exhausted" his funds for any more physical therapy and equipment! We haven't gotten a damn thing from them! I was flaming mad! I spend the rest of the day on the phone with various people and still have not gotten any answers. I have to work tomorrow, but will be back on the case Wednesday.

Luke is still being awful most of the day and especially in the afternoon/evening. He doesn't want me to put him down and screams at the top of his lungs if I do. I have been letting him cry, but it doesn't seem to be working.

That is all for now :)

"Normal"

I am having a rough time lately. I used to love the weekends so I could spend time with Matt and Luke and do family fun things. What I would call "normal" family things. Going places, doing things, etc. However, because Luke is Luke we aren't able to do these things. He will either not enjoy it (therefore putting more stress on me) or not even know/understand what we are doing. I was telling Matt today that I wanted to be able to do these "normal" things with he and Luke. He told me that Luke isn't "normal" and I needed to stop thinking that way. BIG HELP! My way of coping is to sleep all weekend. Matt hates that, I don't blame him. In my head I think that if he had to deal with Luke for two days like I do on a daily basis, then he would understand. He doesn't.

Lately Luke is having a fit when we go out to eat. I have no idea why. We usually end up leaving most of our food uneaten to go home because no one wants to listen to Luke scream in a restaurant. I am done going out to eat for a while. Part of the problem is that Luke can't sit in a high chair/booster seat etc. I have yet to find anything that is designed for a kid like him. So we end up holding him. I think that is what he doesn't like. He can't "play" around with his food like he does at home. I don't know.

Luke officially started his new therapy last Monday. It was the same girl we met with for the evaluation. I am not sold on this yet. This therapist doesn't seem to care. She just acts like this is her job, she will put in her hours and be done. I need someone that gives a damn. She doesn't really talk to me and when I do say something I usually get one word answers. I voiced my concerns to Luke's therapist through First Steps and she suggested I go somewhere else. I am looking at other options. 

I have done about all I can do around the house for now. We can't afford to do much more. The house next door to us FINALLY sold (been on the market for almost 5 years) so that should help us when we want to sell ours. 

Anyway, I am done rambling....

More Therapy

First, let me say thank you for every one's kind words of encouragement since my last post. I knew you all cared, but wow! I feel good knowing I have plenty of people supporting me through this difficult journey. 

Not much has changed with us since my last post. We met with another Physical Therapist (PT) on Monday to have Luke evaluated for more therapy (at the suggestion of his developmental pediatrician). Currently our therapists come to the house on Wednesday and Thursday. This new therapist was at Methodist Hospital. We got there and she seemed very nice and knowledgeable. She spent 45 minutes with Luke and he of course wooed her with his charm :) She did think he needed more PT. I knew that would happen. I don't disagree but I also hate the idea. We will start seeing her on Monday starting in 2 weeks (she has to get it through insurance). This means that every day I am off work, Luke has therapy of some kind. My life is supposed to revolve around my child, not my child's therapies! 

Luke is becoming your typical toddler as far as behavior goes. He is starting to throw fits. Because he is so immobile we do carry him around a lot, but we try not to. Lately, if we put him down in the living room on the floor (where he plays) he starts throwing a massive fit. He cries soo hard and loud. I know I need to just ignore it and I do. But there are times where he is gagging himself with his forceful crying and then it has to stop. I know he is frustrated because he can't move around like he wants to. I wish I could help him....

My depression is about the same. I see Dr. Stone about every 2 weeks. She is helping me to focus on things that don't involve taking care of Luke, as that is wearing on me and stressing me out. My friend Meg said I needed a hobby. I agree, as does she. While I love to read, that makes me tired which is something I am trying to avoid. Dr. Stone suggested that I use this extra time to work on our house. Ideally, we need to sell it and move to a place more suitable for Luke and his growing needs (and again "ideally" for our growing family). However, in order for us to get what we need out of this house, some work needs to be done. So I am taking this idea and running with it! I am currently repainting the garage door (we really need a new one but can't afford it), after that I am resealing the driveway, and then staining/painting our deck in the backyard. That should keep me busy for a while.  

Luke and Daddy :)

Update

Well, it has been a while since I have posted anything on here. It has been suggested to start it up again as a way to discuss all that is happening in our lives. So here goes.....

First, Luke....he is about to be 21 months. I can't believe we will soon be celebrating his 2nd Birthday! I love him to pieces and can't imagine my life without him. He is doing well. He still isn't sitting/crawling/walking yet. We see physical therapy and occupational therapy weekly. He hates therapy, but it does help him. We recently met with some equipment people at Riley to discuss his needs. We ordered a bath seat (since the one he uses now is an infant seat and he will soon bounce out of it) and some foamy things to help position him when needed. We looked at and discussed wheelchairs. This was heartbreaking for me. I have always known that Luke may need assistance with walking, etc...but this made it all hit me front and center. It was hard to look at it, all I could picture was him sitting in it helpless and sad. We decided that a wheelchair wasn't needed yet and we will revisit it next year.
Luke's Likes.....
1. Food: The boy can't get enough. Now that he pretty much eats what we eat, he wants to all the time! We love having him try new things and seeing some of the faces he makes is priceless.
2. Walks: Daddy and Luke go for a walk just about every night (weather permitting). He is so content when out walking.
3. Talking: Now that he knows how, he does it all the time! We may not be able to understand him all the time but that doesn't stop him! Current words: Bye-bye, hi, mommy, Luke, night-night, thank you, truck, no, ba-ba, book, ball, Ellie (elephant toy)

Luke's Dislikes....
1. Being left alone in a room. Just don't do it.
2. Waiting for his food. It better be ready when you put him in his high chair or he will scream!
3. His glasses, he has a love/hate relationship with those.
4. Shoes. I try and put them on him all the time to keep him from curling his toes!

Recently, I decided it was time for me to go see someone to talk about my depression/anxiety. It has been getting worse for a while. Matt is a great husband/daddy, but sometimes he just doesn't get it. I feel like the an awful mommy because while everyone else wishes they could stay home from work with their kids, I am the exact opposite. I HATE staying home with Luke. I love going to work and wish I could work more. I am constantly worrying about money and how we are going to do this or afford this. I am worried Luke won't ever walk, and that upsets me. This is just not what I imagined for my baby. I wanted his life to be amazing and great. Not hard. Matt hates that I am so depressed because I want to sleep all the time when he is home. It is all really starting to build. So about three weeks ago I met with Dr. Stone here in Indy and have been seeing her just about once a week. She has had many great suggestions, one of which was to post more on this blog. She can tell that I am not one to tell everyone all about my emotional needs. She is hoping that by doing this people will see the support I need, because she knows I won't ask.

I am going to try and post more from now on!

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!