Exciting Stuff!!

HENRY SMILES!!!!

All of a sudden Saturday he just started smiling. He has done "gas" smiles since he was in the hostpital but this was acutally a social smile. Jamie and I were so excited, normally you have to wait 6-8 weeks to see your baby smile.. we have been waiting months. It was so awesome. The above picture was at the pediatricians office, she saw it too, so we're not crazy! lol

Speaking of pediatricians office, I went all by myself today. I actually had anxiety dreams about how I would accomplish this....could I manage both babies? would the new monster double stroller even fit in the elevator at the office?? It did! There was a whole lot of "You can do this" haha and I did. People probably thought I was nuts, because I WAS talking to myself, alot. We made it on time and everything. Henry now weighs 9 lbs 9oz. His growth this time was not as big as in the past couple of weeks, but we kind of expected that since he is spitting up so much because of the acid reflux and his gag reflexes. We are going back to the Gastro Dr tomorrow, maybe she will increase the prevacid dosage or we'll switch formulas. Then in the afternoon we have the Physical Therapy evaluation at Blythdale Childrens Hospital. Luckily my mom is coming tomorrow to watch Bella and Jamie is taking the day off to go to the appointments. (Right now he is test driving a MINIVAN! haha...I'm actually so excited.)

Henry is doing awesome with his oxygen! Saturday night we actually had him off for 8 hours, and then a couple more on Sunday, he tolerated it really well. We are just testing it little by little.

Bella has been amazing through all of this, she is very interested in Henry...in the picture below she is actually standing ON his oxygen tank trying to get a peek at him.

MAC & Dr's

So if you know me or you have read this blog you know that a couple months ago i spilled soda on my new Macbook and killed it. We took it to Apple and they told me there was nothing they could do. I was so upset because there were pictures of Henry on there that we had not backed up. Fast forward to last week, we finally decided to order a new one. It was delivered yesterday, I was soooo excited. I waited all day to have some free time to open it up. After I put Bella to bed I finally got my chance. I was sitting at the dining room table playing around when Jamie in. He picked up our dead Apple and jokingly said "this one is mine" and then he hit the on button. He jumped back....the thing had turned on! Now, honestly we tried to turn it on 100's of times in the past couple of months, hoping that something like that would happen. It took buying a new one for it to work! LOL We were so happy, everything was still on there, we did not lose any of the photos!! Now Jamie really can have a Mac of his own ;) That's good, because we are not very good at sharing computers!!

HENRY & BELLA AT THE DR'S OFFICE


Henry has been busy with Dr's appts. Last Thursday we went to the Pediatrician for his RSV vaccination, thank God it finally came in. He weighed 8 lbs 9oz. Friday we went to the Retina Specialist, he said his eyes are the same (which is good) and to come back next week. Yesterday he went to the GI specialist, she increased his Prevacid, which will hopefully will help with the reflux. She said it usually takes about 2 weeks for any benefits to really be noticed. She wants us to see a Feeding Specialist/Speech Pathologist. Henry and alot of preemies tend to always be pushing things out of their mouth, so when he is eating a lot of formula is being pushed back out and he is having trouble keeping the binkie in. At that appt he weighted 9 1/2 lbs!!! He is gaining so quickly! I can't imagine what his weight would be if he wasn't puking half of it up ;)

HENRY'S 1ST PEDIATRICIAN APPT




Today we saw a Pulminologist, she said she heard some wheezing but his lungs sounded clear, which is awesome. He has a slight cough as well so she decided to put him back on a Nebulizer. He is having surgery in a couple of weeks for his hernia and she wants him in the best condition possible before then. She said we really need to continue limiting the number of people he is around and those that are must wash their hands every time before they hold him. I think my hands might just shrivel up and fall off soon from all the washing. Although he looks awesome he really still is a sick kid and it's good that someone reminds us of that so we don't get to relaxed in how we handle him.

HENRY AT THE EYE DR'S

No Dr's appointments tomorrow..WOO HOO! Friday we have the eye dr and then we go to Blythdale for his medical evaluation for Early Intervention.

Bella has been amazing through all of this. She really seems to love him...when she is paying attention! She loves to use his swing for her dolls, lol. She is tall enough now that she gets on her tippy toes to look at him in the pack and play..it's too cute. No matter how tired I am she can still get me to laugh, she is hilarious and has so much energy it's amazing. I wish we could put her in some kind of tumbling classes, I think she would LOVE it, but they want us to limit the amount of activity outside the house and interaction she has with other little kids at least until the winter is over. Today my mom and I took her to the mall and let her wander around, she loves her freedom..as Im sure most kids do.

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!!