Long Time!

It's been sooo long since I posted. We have been so busy over the last couple of month but everything is going great!! Henry is doing amazing. He is receiving Feeding, Physical and Occupational Therapies each once a week and does not seem to be far behind. He rolled over for the first time on Friday. I missed it, I had walked out of the room and when I cam back in he was no longer on his stomach. Can't believe I missed it, but I'm so psyched that he did it!!!! He is 8 months old now and weighs 11lbs. We ran into some feeding growing issues, but things seem to be back on track.

It was hard when he first came home going to constant dr's appointments, sometimes 4 a week..and dragging a toddler along. I thought this winter would be boring but it was not! The only interaction I had with people were at dr's office though, since we were to keep his pretty isolated and away from germs. It was a lonely, tiring winter, but so awesome at the same time. So many times I have said to my husband.."Can you believe we have 2 children??" It's crazy. I still can't fathom how Henry even got here!!

We went to a NICU reunion party yesterday at the hospital, it was so awesome to see some of the nurses and dr's that were by our side through those months. Thanks to FB we have been able to keep in touch with them.

I never knew when we first decided to have kids that we would go through so much. The roller coaster over the last 6 years has been nothing short of insane. Now we have these 2 beautiful children and we pretty much pinch ourselves every day.

Surgery Day

He is having Bilateral Hernia surgery. Ahhhh it's nice to be back in the Nicu seeing all our favorite nurses and Drs but I wish the circumstances were different. I'm so happy we are with people who know him though. When we got here this morning we rang the bell to get into the NICU and were one of the nurses very excitedly say "They're here!!" we got such an awesome welcome.... And Henry gave his ladies a big smile!!
His IV is in....that was fun and now we are just waiting. Surgery is scheduled for 8:15. .. it's 8:30 now and nothing happening.
Luckily he is asleep, he actually slept through the night last night, 11-5!!

What a Difference 2 Years Makes

Two years ago today Jamie and I heard the worst words ever "I'm sorry, there is no longer a heartbeat.." And that was it, our world came crashing down on us. We had been through so much to get pregnant with that baby boy, that to lose him was pain like I've never known. I was just about 5 months pregnant. His name was Sam.

I don't feel sorry about what happened because without that loss we would not have the 2 precious gifts we have now. But I do often wonder about him, especially since Henry was born...what would he have looked like, who would he have looked like.

I wish someone could have told me 2 years ago that every thing would be ok, but honestly I think I knew that. However, I never would have dreamed that we would now have 2 children. It's absolutely amazing what can happen in such a short period of time with a little hope and faith. ;)

18 Months Old!!

A year ago at her 6 month appointment!! lol


I can not believe Bella is already 18 months old. Time truely does fly when you are having fun. Jamie and I can not believe how much she has changed recently. When she wakes up from her naps I feel like even her hair grew in that hour!! I honestly do not think a day has passed where she has not made us laugh, she is such a happy funny goof ball! She does not stop moving from the second she wakes up until she lays her head down. I was hoping to put her in some type of tumbling class but after one family outing to the mall resulted in us getting the stomach virus I decided to wait. Luckily Henry did not get the bug, which lasted for 5 days! We can't risk him getting sick right now, so she'll just have to keep bouncing off the furniture, which she does soooo well! One more snow storm this week and then hopefully we can start going out to get some fresh air, it's been a LONG winter!

Bella had her 18 month appt today, luckily she only needed one shot! Barely phased her.
Afterwards her and I went to the park and then to lunch. It was such a nice day. It really made me realize how big she is getting. No strollers, no bottles...now if we could do no diapers that would be awesome! No rush though. we're just enjoying every minute.

5 Months Today!!!!

WOW, I totally can not believe it has been 5 months since Henry was born. 5 months since I woke up Saturday, September 20th and had trouble breathing, no clue that that was the signal that the pregnancy was about to be finished for better or worse. 5 months of insanity, tears, smiles, fear, love, laughter, anxiety, family, friends, new and old, and lots of compassion. It's been an amazing experience, not all bad, definetly not all good, but none the less an experience. And because of the little prince sleeping peacefully next to me, I wouldn't change a minute of it.

Lots of new things going on. Most exciting is Henry hit the 10lb mark this week!!!!! So exciting. He has had a rough couple of weeks, with feeding and reflux. We had been trying new formulas trying to find one that works for him and in the process he ended up losing weight. But we are back on track now, he is eating pretty well. He still has some difficulties so we will be having an Early Intervention (EI) speech/feeding evaluation soon...hopefully we can get him some help. When babies have feeding issues, it tends to lead to speech issues later on.
We had a conference yesterday with the EI people regarding his OT/PT services and he was approved for once a week for a year! That is so awesome considering we were told he might only receive it once a month since he was doing so well. It's great that he is doing well, but things can change so quickly at this age, we don't want to miss anything. And babies born under 1000 kg have a very high risk for issues...he was 945g.
He has also been off oxygen for almost a week!!

Bella will be 18 months tomorrow, crazy how time flies :)

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!