Henry...go to sleep!!

I'm not complaining..how could I? I'm lying in bed while someone else is taking care of my son, but he is crying and I can't fall asleep while he crys. Oh! And now the monitor is going off...he really needs to calm down!

The nursing thing is working out really well. Since Henry has come home from the hospital he has decided the only way he will sleep is if he is on someones chest, so getting any kind of sleep at night is not an option. I was going to have the nursing switched to days next week so I could take bell out and do stuff but if I'm not getting any sleep then we won't be going anywhere anyway, so I called today and made all the shifts night shifts.

It's kind of weird having a stranger in your house. The first night we had a nurse I was sooo excited to finally get sleep. However right before bed I freaked myself out with the whole stranger in my house thing, which then turned into..this woman is going to steal my kids while we sleep!!!! No lie, I'm insane. I sent jamie a text from bed telling him to go write down her license plate!!! And then I sent my sister a text telling her how nuts I was and now I was not going to get the sleep I was desperatly needing! Her reply was a stream of "haha"s followed in the morning by a text asking if she'd taken my kids. LOL

I'm getting over my little issue now and finally starting to get sleep. I need sleep, Henry has 50 million Dr's appointments each week. Ok, so maybe not that many but he does see 6 different drs...how can an 8lb boy have 6 drs?? We found out yesterday he needs hernia surgery. Go figure. We need to wait till he is more stable but not too long as to where the hernia becomes a serious problem. The surgery will be end of Feb beginning of March..and he'll have to spend 24 hours in the hospital..ugh. Oh well, other than that he is doing well. So far his eyes are looking better. We see the Retina Specialist every week for another 10 weeks. His acid reflux is pretty bad, he makes these horrible gagging sounds, looks so painful.

Despite all that crap, he's really cute and loves to cuddle so I'm happy :)
Bella seems happy with him , soon enough they will be playing together!

PTSD

Wow, it went quick but looking back it was long! I can't believe Henry has only been home a little over a week, it feels like he's always been here or more like he was just born. I find it funny to look at him and say he is 4 months old, he's so little he looks like a newborn. The time we spent in the NICU feels like a different lifetime. From the time I got pregnant I dreaded the last trimester, getting huge and uncomortable and not sleeping, all that stuff I was so not looking forward too..i'm sure no one does. Well I did get to avoid that but I had my own kind of hellish third trimester. I've had more than a few people joke with me about how i've 2 kids and managed to avoid stretch marks..while this is true (and I'd be lying if i said i wasn't thrilled about that!!LOL)nothing in life is free. I might have said this before but it's so true that i'll say it again, I have more internal scars than had i gained 100lbs and gone full term with 2 kids. These scars will never go away, but like stretch marks, they will fade.

I actually still get sad when someone in real life or even on TV gets pregnant. I honestly have to remind myself that I have 2 kids and that one of them I actually did carry and give birth too. The pain was with me for so long, that my brain hasn't really totally caught up with reality. Then again my reality is not the norm. I had a baby in Septmeber, I didn't get to hold him until October, didn't give him a bath or bottle until November and did not get to take him home until the last day of Decemeber. I didn't have the beautiful birth experience that I had been so excited for. My brain does not even really comprehend the C section, it was all so crazy, it kind of felt like he was just taken from me in the middle of the night.

Stomach there, stomach gone.

Kind of reminds me of when I lost the baby last year. I had a belly, i went in to surgery came out belly gone, baby gone. And all that happened at Columbia. Henry was born in Westchester but by the end of the day he was at Columbia. So like I've said this week has been full of different emotions.

Someone at Columbia and at Northern Westchester gave us an article that was in the NY Times about the NICU Experience and Post Traumatic Stress Disorder. I read it and found it interesting but as I was going through the experience I couldn't really understand it, but I think I'm getting it now. When something traumatic is going on in your life your main goal is to survive. Not think, not dwell, not cry just survive. You guard yourself so much because it feels like if you let a little crack start then it's over...you totally fall apart and won't know how to deal with the actual situation. Or atleast that's my interpreation and that's how I felt. I didn't want to talk about anything to do with Henry besides the facts. I told people what was going on and then added, he's fine or he's doing great. When I didn't really know. But i didn't want pity or sadness, it might have killed me. Jamie and I both just felt we needed to be strong and deal with things one day at a time, sometimes one hour at a time.

Now the craziness is over, life is quieter...which lets your head wander more. Now I think about all the what if's. And it scares the hell out of me.

Henry still needs a lot of help. He is still on Oxygen, although very low amount, which is awesome. But his eyes are still a small concern, he needs hernia surgery, he will be seeing a GI speicialist, a Pulminary Speciaist, OT, PT and maybe speech.

So I guess we still take it one day at a time. Henry is here, Bella is here and both are amazing. The past 3 years are so insane it makes my head spin and the future is the future so why bother worrying about that. We're doing our best to get used to our new normal and enjoying our family. It's kind of awesome, still can't believe it's real :)

NY Times: http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=1&_r=1

After 102 days we are Home Sweet Home :)

Day 1: 2lbs 1oz and 14 inches


Day 102: 7lbs 8oz and 20 inches


So much to say. Our stay at the hospital was filled with so many different emotions. On top of finally getting to spend the night with our son, we had to organize nursing home care, set up the oxygen company, he needed to pass his hearing test and eye exam, get circumsized and say goodbye to the people who had taken such amazing care of him and us. Taking down all the stuff we had hung in his crib was really emotional.
Putting him in the car for the first time and leaving the hospital WITH him, was so amazing...we had talked about this day for months. I still can't quite comprehend I gave birth to a baby in September and took him home on New Years Eve. I think that is starting to hit me now that the craziness is over..it's not that easy to deal with, but he is here and that's the most important thing.
We haven't gotten much sleep since he came home but it's been amazing none the less. Bella is awesome with him, very curious, a few pokes here and nothing crazy. She is really interested in his monitor, every time it beeps she's says "what's that?" (and it beeps ALOT!). He sleeps ok through the night, the monitor is the thing that really keeps me awake...it's attached to his foot, measuring his oxygen saturation levels and every time he moves it freaks out beeping because it can't get a read. I will not miss that thing. Hopefully he does not need it very long.
Having him come home on o2 was very intimidating, and overwhelming but we are getting used to it. We had an infant CPR class at our house this past weekend for us and our parents. Hopefully we never need it, but atleast we all know what to do now.

We are so happy he is home!!! Sometimes I pretend that we was born last week and the previous 3 months never happened...sometimes I succeed in convincing myself if only for a moment :)

Pictures!!

Henry Coming Home!

Day 100: headed to the hospital!!!!

Hospital bag is packed and we are having a baby! ! Lol or that's what it feels like! We are headed down now to spend the next two days with Henry. They were putting us in the NICU private room but since H is still on o2 we will be stayng in one of the post partum rooms since they have o2 hook ups there.
SO you know what that means????I am going to get my family picture in the hospital bed that I wanted to badly...maybe I'll even slip on one of those awful hospital gowns! :) I wish Bella could be in the picture but the hospital is closed to anyone under 18 due to
Flu season. :(
The plan is to take Henry home on Thursday. .aka New Years Eve!!!!!
He was supposed to have his eye exam yesterday but the specialist cancelled... H

Day 99: OMG!!!!!

Sorry for not posting, things have been really busy. The better Henry has gotten the more time we have been spending at the hospital, feeding him, bathing him and just really getting comfortable with him.
About 2 weeks ago they decided to start weaning him off CPAP, cutting it by an hour each night. They stopped when he was at 3 hours, it was actually annoying him more than it was worth at that point. So they left at if he needed it, he would be put back on but otherwise leave him on just o2. I think it's been a week now, and he is going great.
Last week they started using the word "soon" in reference to him going home, but with no commitment to a date. They also had us start getting ready. We are in the process of setting up at home nursing assistance since he will be on oxygen. We don't know how long he will need it but we'll only have the overnight nursing for about 2-3 weeks, just to help us adjust and make sure we are comfortable.
His eye exam last monday went great! The left eye was the same and the right eye had gotten better so the Retina Specialist said the chances of surgery were low.
He might have a hernia, we'll find out more about this this week. If he does require surgery for that, it will be at a later date when he is more stable.

So now for the good news...he is coming home this week!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I talked to the dr today and she said as long as the eye exam goes well tomorrow he will be home by Friday!!!! If not sooner!
Jamie and I are going to spend the night at the hospital Tuesday and Wednesday. They have a special room for babies and parents to stay in right before they go home. The dr said we could start tomorrow but we are honestly not ready at home!LOL This is earlier than we expected, so we're going a little crazy!

We are so excited, can not believe that after all this time Henry will be coming home. As of last night he weighed 6lbs 14oz, they haven't weighed him yet tonight.

Gotta go, lots to do. OMG, we're having a baby!! LOL ;)

Day 88

The dr's most recent orders for Henry were nasal cannula during the day and CPAP at night...do not wake him to switch back and forth..he needs his sleep. Soo last night, not sure what happened or who decided what but someone other than the Dr decided to keep him on the nasal cannula for the night because he was doing so well. That's great that he was doing so well, but he was doing great a couple of weeks ago too when they tried that and he went backwards. Now they are trying to slowly wean him instead of just stopping. The nasal cannula just provides him with a little o2, the CPAP is pressurized oxygen that can actually aid in the repair of his lungs.
So i was pretty pissed when I went in this morning. I asked the dr if he changed the orders, he said no, i told him what happened last night. I said I want my son home, so do whatever he needs to make him better..and make sure the nurses are following your orders.
And then Henry is supposed to have physical therapy every M,W,F...no one could tell me if he was getting it. The nurse called the PT office and no one called her back and no therapist showed up.
I'm at the hospital alot. I guess I need to be there more, because I do want him home and I want to make sure everyone else is on that same page. I'm tired, enough of this.

He had another eye exam tonight and the Retina Specialist is starting to see a possible problem. He has been coming once a week but he said he'd be back before monday to check on it again. It's called Retinopathy of Prematuriy, it's not a huge deal since it is being watch so closely but if it gets worse he will have to have laser surgery. Prematurity and massive amounts of o2 for the last 3 months are the cause of it. Hopefully his eyes will be fine though :)

Day 87

Henry is doing great. He has been off the feeding tube for a full week and drinking like a champ. He drinks anywhere from 2-3oz. He is still on CPAP. They were alternating between that and the nasal cannula every 1.5hrs but it was actually wearing him out waking him up so often..."don't wake a sleeping baby..." so he was not doing so great for a few days. They decided to keep him on the cannula during the day, CPAP at night and just let him sleep. When he wakes up, he eats..no more waking him up. This seems to be working really well, he seems very happy. He looks great when he doesn't have all the tubes and crap on his face. I'm so happy that during the day I get to stare at his face..makes things a little easier.

He officially hit the 6lbs mark this weekend..so awesome. Eating and growing are 2 things that can be a problem with preemies..not this kid!

Yesterday was my official due date. I didn't write because i didn't really want to think about it. I don't honestly know what to think about it. I was supposed to have a baby yesterday, but he came 3 months early, he was supposed to be home yesterday but we're being told he still has "weeks" to go. So I just keep focusing on the fact that although he is sick, he is here, he will be coming home and he WILL get better.

We went to an information session yesterday on Early Intervention it was very informative. They are saying based on the fact of his size, being a micropreemie, he is guarenteed to have some kind of issues, but there are no telling what they will be and to what extent. One plus is that babies who have feeding issues are at higher risk for speech issues...he defintely does not have feeding issues so that is one thing we hopefully do not have to worry about.

Since his due was yesterday, his adjusted age is now 1 day old. That is the guideline we will be using for eating, walking, talking etc. Hopefully soon we'll start to see some smiles!!

Day 80: Awesome Day

Henry has been feeding tube free for over 30 hours!!! He just decided he wants to drink all his bottles..more like chug them. It's so awesome! One more thing accomplished that we can check off the list. Today he drank 60cc's (2oz) in 20 minutes..a couple of weeks ago he was getting a fraction of that.

The Dr that was on today was saying that they are really hoping NOT to send him home on oxygen. They have only done it a few times in the past and they'd prefer not too. She said that might mean he is in the hospital a little longer but atleast when he came home we wouldn't have to deal with that! We would be so happy.

Day 79: Lots of cuddling!

I spent 6 hours at the hospital today snuggled up with Henry. He is doing really well, he drank 3 straight bottles today no tube feeding while I was there!

Last week was long so I didn't have to much to write because nothing really good was going on. Henry went back on CPAP and then the Dr confirmed what we were thinking...Henry will not be home by his due date on the 14th. That was something I was not prepared to hear. In the begining when we were running on a adrenaline (and fear) and received bad news or a set back we just kept going. Well now we are running on fumes and it took a lot to bounce back from that news. I just want him home. So I spent today telling him that he needs to be home by Christmas.

We are starting to understand that when he comes home it is not like bringing a newborn home...he is coming home on Oxygen, and will need Early Intervention services (occupational, physical and speech therapies). It's amazing how they have been telling us this for weeks but we are just starting to wrap our heads around it now. We have no idea to what level he will need these services, we'll see as he grows how much help he needs.

We also just found out we might qualify for nursing services...like OVERNIGHT nursering services. THat is the only good thing to come out of all this crap. We might actually get to sleep at night knowing a professional is taking care of our son. That will be a huge relief if we qualify because otherwise there is no way I am leaving him alone, which means I will not be leaving the housee all winter since he is not allowed to with exception to his Dr's appointments...and sleep? i highly doubt either one of us would get much sleep when we are checking every 2 seconds to make sure he is breathing. I kind of wish we could bring all the monitors home with us!!!