Grace's 1st time in the snow!! And our sensory activity...

So I made a sensory bin for Grace yesterday out of randoms in our house. I used pink and green beads, a big bowl, 2 smaller tupperwares, a wooden spoon, a measuring cup and her goat from her barn toy. She LOVED it! Played for 30 minutes without a peep from her. Here are some pics!








She kept taking the beads and putting them in the tupperware then dumping them back in the bowl! It was amazing watching her little brain work!



Then the SNOW!! She was so cute...



Trying snow for the 1st time...



Daddy throwing snowballs at her.



When did my baby get so grown up? She looks like a little girl here!!

Pertussis (whooping cough) ??

Adam just found out he has whooping cough. He has NEVER seen Luke or been around Grace since the Friday before Luke was born (9/23 to be exact). So 2 questions...

1. Is there a chance Grace could have it because we saw him a month ago? She is current on her vaccines. How long do you have it before symptoms show? Like could he have been contagious a month ago?

2. How long do they have to be on meds before he's not contagious? They are having a party for my nephew on 11/9... Is that too soon?? Luke wouldn't be going at all but I thought about bringing Grace. How long do I have steer clear?

I'm immune (had it as a child) and Kris just for a booster with a tetnus shot last year. I am SO paranoid right now...

3 weeks old

Luke had a pedi appt today. He looks awesome! He was born at 6lbs 1oz. Came home at 5lbs 5ozs. Last week he was 6lbs even. Today... he was 6lbs 13.5ozs!! This kid can eat! Go Luke... Luke is 3 weeks old today. Pedi said he's looking good. Hasn't caught Grace's stuffy nose (which really makes me think it's allergies for sure). His lungs sounds great, which I am ALWAYS worried about. He's having some spit-up and poop issues because we switched his formula, but they should work out soon. And he may have reflux, but Grace had/has that so I'm not surprised. So that's it! My kid is almost in the "normal" category. 5 more weeks until he can experience shopping and mall fun and we can finally go out together as a family!

My boy...

Luke's doing amazing! He came home last Sunday. He had to stay for 11 days and even the drs and nurses were surprised at how quickly he recovered! They were so surprised to see him go! We went to an appt last Wednesday and he was 6lbs 0ozs (he was 6lbs 1oz at birth). We go back tomorrow to make sure he's still gaining. He eats like a champ and poops like he is a boy, this kid always smells like something coming out of him!

Our little guy is so strong and you wouldn't know just looking at him what he's been through. He does still look like a skinny chicken though, so we are trying to fatten him up. He sleeps pretty decent at night, which is awesome! Usually does 3-4 hr stretches at a time. We are very blessed and are just enjoying every second with Luke and Grace!

Next is just a whine. And all of this is excluding my mom and Kris (they are AMAZING!!). Do you know that my brothers still haven't even held him yet? And ther than the day he came home from the NICU, no one has even come to see him (other than my mom). No one calls to see how he is or how I am doing with 2 kiddos 13.5 months apart! It's appalling to say the least. I'm upset that even having a son who went through what he went through doesn't spark anyone's interest in my kids. Maybe I expect too much?

Irrational fears??

Since Luke was born I've had some irrational fears. I'm afraid of him getting sick or ending up back in the hospital. Grace woke up with a stuffy/runny nose yesterday and I had a mini-breakdown. I'm 99% sure it's allergies (no fever and it's clear and she has no other symptoms) but I'm still a wreck. Poor kid has me doing hand sanitizer on her multiple times a day. Every cough/sneeze/weird breathing sound Luke does I'm telling myself he's sick.

I'm afraid he's going to stop breathing on me. I witnessed him having an apnea episode in the hospital (one of many from morphine) and it was awful! I talked to him and shook him slightly before the nurses got to him and he didn't respond. It required a lot of stimulation and ventilation support to get him to remember to breath. It was scary! I'm afraid if he did stop breathing I wouldn't be able to save him. When I burp him I'm afraid of making his lungs collapse again if I burp him too hard. If he isn't eating normal, then I'm thinking the worst. If he's up more than usual he's sick in my mind. I stay up at night and can't sleep because I'm afraid one of them is going to wake up. My mind won't shut off. Kris asks all the time why I'm so worried about Luke. I know it's irrational but I can't stop! Is this something I should talk to someone about or is this just because his rough start is too "fresh" in my mind?

This also brings up another issue I'm having with my OB. I don't trust him. After everything that happened leading up to/during Luke's birth and what he said to me during labor (essentially that it's my fault Luke came early). I'm not sure if I could even talk to him about this if that is what you guys think.... All I know is I feel like I'm going crazy. Even when my kids are sleeping I'm not because my brain won't turn off. I'm exhausted mentally and physically.

I am looking into a lawyer, but I'm not ready to talk just yet. I was informed at Luke's discharge that he could have hearing loss from an antibiotic he was on. This antibiotic was unnecessary and he was only on it because my OB refused to give me a 2nd dose of antibiotic while in labor (my GBS status was unknown because I was tested that day). If my OB waited until 12 midnight, I could have gotten a 2nd dose, but he "wanted me delivered by 10:30." Luke was born at 10:24pm. I was already 7cms that day and he broke my water and started Pitocin to have me delivered by 10:30pm. Luke's Neonatologist said that if he had had time to labor in the birth canal longer, his lungs would have been squeezed more and Surfactant would have been produced. But instead I went from 7-10 in 1.5 hrs because of he pit. Also, my OB knew his gestational, I should have delivered at a hospital with a NICU. Instead, Luke was transferred and almost died in the ambulance due to an apnea episode secondary to Morphine given. If his 2nd lung had collapsed at the hospital I delivered at, he would not be here. He went downhill quick... and they can't do chest tubes at the hospital I delivered at. So much is wrong with this picture, a lawyer is definitely in my future... especially if he has hearing loss (we follow up at 24 months).

Made-up language

Grace talks in this language that has to be made-up. She doesn't say actual words but she will "talk" to you like she's having an entire conversation. All we have to say is "Grace, jibber jabber" and she's off! Talking this made-up language. She also doesn't say many real words. Just lots of "dadadada" for things and of course she calls Luke "Benjamin or jaboo." She can say cat, thank you and milk but that's really all. Is this normal? I feel like she's really immature with her language skills. Uuhhh, uuhhh, uuhh is all we really hear when she wants something. I encourage her to "use her words" and always say what it is I'm doing for her but she never repeats.

I have a video of this made-up language and would post it if I could figure out how. It's really hilarious!!

When it's your toddler keeping up at night, not your newborn (vent)

So, Grace has been STTN since about a month or 2 before Luke was born. Yay!! Since he came home, she's has a night or 2 that she woke up but nothing horrible and we left her cry/fuss herself back to sleep. We never had to go in... until last night! She wouldn't stop crying and after 25 minutes, I went in. BIG MISTAKE. She wouldn't stop crying and was acting like she was in pain, but I soon found out she was playing me so she could play downstairs. So back in the crib she went.

After 1 hr of standing over her crib with my hand on her back, I let her cry for 15 minutes... nothing, After 2 hrs of standing over her crib, I left her again to cry for 20 mins... nothing. After 3 hrs of standing over her crib, I left her cry for 30 mins... nothing!! This girl cried/screamed so loud she woke up Luke, so back in I went. Finally at 2:30 this morning, I gave up. It had been 3.5 hrs since I went in at 11. Kris took over and had her to sleep within 30 minutes.

During all this... Luke was up for a feeding at 10:30, then 1... not a peep out of him before or after. Maybe he can teach his sister? How do you not hold grudges against her this morning? I'm exhausted! She got up at 8am, 30 whole minutes later... not enough for mommy!

I've seriously had enough of her sleep issues...

Update on us and some pics!

Well, we are surviving. Having Luke home is so amazing, but exhausting at the same time. He is such a chill baby and so laid-back. Being in the NICU has gotten him used to laying in his crib alone so I've been trying to keep up with that for at least part of the day. He only cries when he's hungry and seriously is so enjoyable. Sunday night was rough and he was up every 20 minutes between 2 and 4 for his pacifier (a curse of the NICU) but last night he slept in 3 hr increments all through the night. Grace was the one up from 2-4:15. Luke had to eat at 4, so I had to let her cry and she eventually put herself back to sleep. That was torture... having the baby sleeping but your toddler is keeping you up! 

It's crazy, but good. Luke is actually the easy one. Grace is driving me nuts! She's whiny, cranky and defiant sometimes. Other times she's "normal." I knew there was going to be an adjustment period for her, but this is ridiculous! I want my easy-going girl back again! She is finally not hating the baby... all day Monday she was yelling at him. Now she is saying "hi baby" and rubs his back or touches his feet. It almost sounds like she's trying to say "Luke" too! It's really cute. It's amazing having the 2 of them together!

Having a preemie is stressful. Every sneeze I worry and I am a freak about washing hands. I literally have sores on the back of my hands from it. Grace can only touch him on the back of the head and the feet. I can't take him out to stores or go anywhere (which sucks because we had Grace out the day she came home from the hospital). I feel angry and tied down, and I want to get out of the house! But as long as Luke is healthy, then I can do this... it's just really hard.

Now for the pictures...

Luke's lazy version of tummy time!

Here's us yesterday and Luke's 1st time in the swing!

Coming home day! 10/9/11

And now for a comparison... here's Grace.

These 2 look so much alike it's crazy. I have no genes at all!! Luke does have a different nose though and it's just so cute!

I will admit though that it's hard with Grace acting up the way she has. I want to scream by day's end everyday! She's testing me and so defiant sometimes I loose my patience a lot. Diaper changes have become a fight, diaper cream gets everywhere and I end up being the one who is crying. She whines and yells a lot. She is biting now and I'm afraid she's going to start throwing. She stands on her toys and her tables. Opens cabinets. Used to listen to "no" and now just laughs at me! I feel so lost. I feel like I'm loosing my mind. I expected a lot of sleepless nights and busyness but I never imagined Grace behaving this way! I am mad at her a lot and I feel like I don't love her (which I know isn't true but it feels this way)! All I want is to snuggle with my little boy and she won't let me! I am slightly resentful for that. I feel like I don't get any time with Luke and his infanthood is passing me by. I don't get to enjoy my kids because I am constantly yelling at Grace because she's out of control. What do I do? I know this is because of Luke and I REALLY pray this is a phase, but it sure feels like this is going to last forever.

Home!!

After 11 days in the NICU, 2 chest tubes, 3 collapsed lungs, 3 days on CPAP, 5 days on O2, jaundice, and severe Respiratory Distress Syndrome our little miracle is finally home!!

Don't worry... I have shorts on! 

He's coming home!!

Luke's chest x-ray looked good and he passed the car seat test!! He's coming home TOMORROW!! We are so excited! We are leaving at 9:15am to go pick him up. Already started some discharge paperwork today so I know it's real (assuming nothing new happens tonight). I had to vacuum and clean because he has weaker lungs. And I was trying to spend some quality time with Grace before tomorrow.

Luke gets cuter by the day! I can't wait for tomorrow morning, it's like Christmas in our house right now!!

Praying...

Luke has a chest x-ray in the morning to check on that collapsed lung. If it looks improved or gone, he can come home Sunday or Monday!! All the nurses seem to think he's coming home (everything else looks great) and they've been doing a lot of discharge stuff with us. We have the car seat test tomorrow too, where he sits in the car seat for an hour to make sure he will do ok on the ride home. We really want him home... This NICU crap is for the birds!

Update...

Yesterday was the first day I've seen Luke without tube and wires in his face since he was born! It was amazing. I didn't want to bother anyone with more updates. He is off O2 and bottle feeding about 2ozs per feeding! He regulates his own temperature. He's getting a circumcision today...

He would most likely already be home at this point but his right lung collapsed again. Luckily no chest tube was required this time!! But they wanted to monitor him since he went downhill so quickly the last 2 times. He's doing amazing though! I gave him his first bath last night. And he gets to wear real clothes today. I'm sad because I feel like I've missed out on over a week of his life, but I can tell he will be home really soon! We just don't know when at this point. They said they *think* maybe Monday or Tuesday but who knows for sure. We did find out that there are 3 other Lukes here born at 35 weeks and our Luke was the only one who need 2 chest tubes and had 3 collapsed lungs in total. Talk about bad luck...

We finally got Grace & Luke together! It was amazing having my whole family with me!

Moving along!

He's amazing! Both chest tubes are officially out!! He's off CPAP and has some O2 by nasal canula but he's on room air. He just is having trouble getting his breathing rate down. He's getting 15cc's of formula by feeding tube every 3 hrs. Last night he took 1 tsp of formula by bottle then tired out. No more arterial line, that's out too! He's on phototherapy now for jaundice but that's normal. We got to hold him for the 1st time yesterday!! It was amazing... I will post pics later but right now we are heading out to see him. It's the first day Grace is with us all day, so I'm praying she does well at the hospital (my mom had to go back to work). I'm getting upset lately because I just want my boy home! I don't want to do this anymore... It's exhausting and frustrating and I want normalcy back in my life. I did laundry today and that felt so good to just do something normal. Kris goes back to work on Thursday and I'm already having anxiety about it!! I'm praying Luke can come this weekend so I don't have to do this all next week too.

How's Grace doing?

Grace is doing ok. She knows something's up but doesn't know what. She whines a lot more than normal and is very clingy but we expected this. Bedtime takes longer and she is waking again at night but she's been through a lot. Poor girl keeps thinking we're leaving again! Considering everywhere she's been thrown and that fact that her entire routine has been turned upside down, she's doing awesome! She such a good little girl...

Don't judge...

Small update

Luke is doing amazing. He is still on CPAP but they tried him off of it last night for 6hrs. He did awesome but started straining to breath a little so he's back on it. He's breathing room air but he needs the pressure for now. His billirubin rose so he's on the lights now. He still has both chest tubes but will hopefully be getting the left one out today pending an xray. He is starting feeds now (yay!!) through a tube so hopefully that gets him closer to coming home. We had quite a few set backs and scares but it looks like we are finally on the road to recovery!

Being a N.I.C.U. mom SUCKS

It SUCKS!! I hate saying I am a NICU mom or walking around the hospital and people ask you about it because you have the band on your arm. This is the hardest thing I have EVER done in my entire life.

I hate wearing this arm band (Kris hates it too). I hate not being able to hold my son or change his diaper or feed him. I hate asking someone else if I can do something with MY son. I hate leaving him, worrying about him every second, calling the NICU 2x's a day saying "I'm calling to check on my son, Luke...," having a panic attack while waiting for the nurse to answer because you think every.time that something MUST have happened. But mostly I hate that he has to go through this. I don't want to be a NICU mom anymore... I want my boy home!

All I tell myself is if Luke can go through all this crap he has gone through I can rearrange my entire life to be there for him. He's the one doing all the work and I just have to be strong for him... and for Grace. It works for me to tell myself that.

Our 1st time leaving him... :(

We had to come home today. Grace needed us, we need clothes and showers and a rest and it's SO hard! I miss Luke. I feel bad when I'm at the NICU because I'm not with Grace then I feel bad at home because I'm not with Luke. I don't know where I'm supposed to be anymore!! I can't do crap because I just gave birth and I'm getting engorged and have to wait for my milk to dry up... My baby is supposed to be home so I don't notice I'm in pain.

On a positive note Luke is doing amazing! He is at 21% (which is what we breath) on the CPAP and they are just waiting for his breathing rate to come down before he comes off it. He may be off CPAP by tomorrow night or Monday! His arterial line may come out in the morning as long as his labs are good. His cultures came back negative for infection so he doesn't have to be on antibiotics anymore. He's resting comfortably and looking to eat and he took his first poop today!! Yay. I got to see him without the CPAP on and he is so beautiful. I also got to change his diaper today and that was so great. Grace is doing well too and is happy we are home. I want to celebrate having a baby and instead I'm being pulled in every other direction possible!!

He was getting his CPAP tubing changed and we finally got to see the "real" him...

And here's his hair!!

Guilt... among other feelings

I'm dealing with a lot of feelings towards my OB... Anger, guilt and most of all in upset with myself. I feel like I put too much trust in my dr and now my son is paying for it. I spoke with our case worker here in the NICU and it was nice to get my feelings out. She is very angry for us. I have felt nothing but guilt since his comment while in labor! I feel somewhat responsible for why Luke is even here to start with. But it's gotten better and talking with the people here has helped. A lot of things happened in the course of this pregnancy that my dr labeled as "normal" no matter how many times I expressed my concerns. I didn't bother you guys with all that stuff, but I may in the near future. I can't talk to a lawyer because unless Luke has long-term damage/problems nothing would come of it. So for now I'm in the search for an OB who will see me for my 6 wk check because I can't bear to look at my current one!

I did speak with Luke's neonatologist though and he agreed that my labor probably shouldn't have been pushed along in the manner that it was. I went from 7-10 cms way too quick and Luke had no transition time. This was because my dr used pitocin (even though I was contracting every 5 mins on my own) to get him out "by 10:30"). I never got a GBS test because he came too soon so I needed antibiotics. If he waited until 12 I could have gotten a second dose!! Instead he insisted on 10:30 and now Luke has to be on antibiotics until his cultures come back... It's a lot of BS and it's upsetting us. Our birth experience as tainted to begin with because of Luke's condition but he ruined it too.