Day 51

Henry is doing awesome. His incubator is at room temprature and he is maintaining his own temp..which is another big step. Hopefully soon he can come out of it and into a crib. But there is no rush, and he's pretty comfortable now. He is being fed 39cc's of formula and weighs 1898 grams..4.18lbs.

I came in around noon and held him for about an hour and a half..so cute, eyes wide open. About half way through the little bugger, started holding his breath, his heart rate dropped way down and he turned purple. He was pooping. Or at least thats what the nurse believe happened. She said I handled it really well...it's been about 2 hours and I don't think I've gotten over it lol. SO FREAKIN SCARY. He is NOT allowed to do that when he comes home. Holding breath not allowed.

I just went for a long walk and when I came back I was told they were not admitting visitors to the NICU (visitors??) the nurse came too the door and told me Henry was fine, but there was another baby that suddenly wasn't doing well and no one was allowed in. I feel for that family so much. Babies should be fine, babies should not get sick.

I need him to come home where he belongs. 8 weeks of hospitals is getting old...and years of nurses and doctors is REALLY old. :) But it's fine...he'll be home soon enough. Healthy.

Day 50: I cried

..but not because of Henry..but because I spilled soda on my brand new Mac book and the guy at the store told me it was dead. I wanted that thing for so long and I'm so pissed at myself. I'm clumsy, I should have known better. SUCKS! Did I really need that????????????? We lost some pictures of Henry too, not happy.

So now I'm at the hospital using the computer in the NICU "Family Room". The nurses are doing shift change right now so I can't go in.

Jamie came to see him this morning, he got to hold him..he was very happy. His O2 has been around 30-35 since he got here and it was in the high 20's at Columbia so they have been trying to figure out why he went backwards a little and needed extra oxygen. They took a chest xray yesterday and said his lungs looked a little cloudy. They had stopped the diuretic when he got here but they gave it to him again yesterday in hopes of getting some of that extra fluid out of his lungs. He is almost up to 1oz of formula..which is pretty cool!

7:25...5 more minutes and I can go in and see him. I hope I can hold him, we both need it.

49 Days Old: Kangaroo Care

Today I got to do kangaroo care with Henry. It is where you hold the baby skin to skin, there have been studies showing this can have a dramatic positive effect on the health of a baby. And anyone who saw Grey's Anatomy last night and saw Karev (sp?) doing it sawgreatly exaggerated TV version lol but still the point is the benefit for the baby..and mom. I cried. I couldn't help it. I'm so afraid to cry, I'm so tired, feel so beat and yet so happy all at once that I'm not sure what would happen if i started.

45 Days: Half Way There

Henry is back in Westchester!!! He is now 30 minutes away instead of an hour and he is half way to his due date...so hopefully he will be home in 6 weeks!!!

The news that he was leaving Columbia came so suddenly that it was a bit shocking for us, even though we were happy about it, we had gotten comfortable there and it is the best hospital in the area. Yesterday we were both pretty anxious waiting for the transfer to happen. The last time he went in an ambulance we were scared out of our minds about what was happening, we were even told there was the possiblity he might not survive the transfer down to the city so while yesterdays was a different story it still brought a lot of anxiety with it. It didn't help that it was supposed to happen at 11 and I was still pacing our house at 12 waiting for the call he was on his way.

He finally made it safe and sound to Northern Westchester in the early afternoon. The nurses there are wonderful. They remember us...I don't remember crap LOL

We are soooo happy to be back!!

43 Days

Tomorrow is the big day!! He is going back to the hospital where he was born. So excited!!
Nothing new and exciting today...which is very exciting in itself :) He is up to 23 cc's of formula...started at 3 goal is to get to 33, they are uping it 1cc every 3 hours. The PIC line is out, which is awesome. A few of the babies have gotten the infection that he had a couple of weeks ago so as a precaution they all are getting bathed with a special soap and an ointment put in their nose. The infection lives on the skin, so hopefully that will take care of it. He does not have another infection, it is just a precaution.


Tomorrow he is being transported at 11am. We are so excited!! Everyone at Columbia was awesome, they were so great with Henry and really good to Jamie and I, we are so appreciative of that, it will be nice to be closer to home though.

6 Weeks Old!!!

I can not believe Henry is 6 weeks old, it's amazing. He is now 3lbs 7oz!!!

Jamie talked to the nurse this morning and he said that during rounds the Dr said they are thinking about sending him back to Westchester on TUESDAY! Holy Crap! I can't believe it...he's come so far!! We'll find out tomorrow what the actual plan is.

DAY 42: Daddy got to hold him today!!

Today was great, Jamie got to hold Henry for the first time and change his diaper!!! He is doing soooo awesome. He is on 23-28% oxygen which is so far from when he started. His feeds are up to 11 cc's every 3 hours..they started at 4 cc's. When the Dr's did rounds there used to be a whole entourage with them for all the different things wrong with him and it would take about 20-30 minutes to go over everything and figure out the next steps...yesterday there were 3 people and it took 2 minutes...goal of the day, up his feeds and get him to poop! That is along way from get him to breath and fix his heart...(cry)..i'm just amazed at all this. The Dr said the other day to start thinking about taking him back to NICU in the hostpital where he was born...I was the one that stopped breathing at that point. I can't believe he is doing that good. I'm so psyched...he is no longer the "sick" kids...they don't use words like "severe" when talking about him. Awesome. He does still have Chronic Lung Disease, his lungs will take a very long time to repair but other than that things are great.

He wore a onsie for the first time today...crazy!! It was preemie size and big on him, lol :)

It was also Halloween today, we had so much fun going out with Bella and our neighbors. Bell got all into it, loved the independence of walking up and down the street alone...she actually walked up to houses by herself! It was great!

Day 38

The past week has held a lot of ups and downs. Just a week ago Henry had the surgery to close the hole in his heart, that went great. Then on Thursday they took him off the ventilator and put him on oxygen assistance, CPAP. That was great for 24 hours and then he got really tired so they needed to add some more help and give him a few breaths from the ventilator. Then on Sunday we called to check in on him and we found out there was another large air bubble in his right lung and it was threatening to collapse the lung so they had to put another chest tube in. On Monday, the bubble had not gone away so they removed the chest tube and did it again to place it better....ugh POOR kid!!!

Today was much better. His xray this afternoon showed the air bubble was mostly gone and they will take the chest tube out tomorrow!! The Dr said his lungs sounded really good. They also started feeding him. It's a small amount and they said its going to take a while for his gut and intestines to figure out what they are supposed to do since he is an "old" baby who has not been really fed much yet his body is basically clueless on what to do with it. As it is, he is too young to actually take a bottle (he doesn't know how to suck, swallow and breath at the same time) so there is a tube that is in his stomach which feeds him.

I can not wait for him to come home and be done with all this. He needs a break, but we know everything they are doing is making him healthy so he can come home.

Yesterday he was 33 weeks gestation...so maybe we only have another 7 weeks. Maybe.

"

day 34: Extubation!

Henry's face, finally!!!!!
First picture with Mommy & Daddy


Henry on CPAP


11am: dr just did rounds and said it's time. My stomach is freaking out as much as it was prior to the surgery. He doesnt always feel like breathing on his own and that is what he's going to have to do from now on. We grilled the Dr about what happens to make sure he is ok and she said they watch him extra close and jump when the alarms go off....now they hardly flinch when he sets off the alarms because they know the ventilator will take care of his breathing.

They are planning on doing this in an hour, approx 11:30. In the mean they are giving him Caffine...yup caffine! This is to make sure the little bugger stays awake so he remembers to breathe!

8:30pm: We're home..long day, but Henry did great!!!!!!! He was taken off the ventilator today and did really well. One of the Dr's even took pictures for us when they had all the crap off his face..so nice of her. He seems soo much happier on CPAP, he no longer has a tube going all the way down, now it's 2 small prongs in his nose just giving him a little bit of oxygen. They said he might need a little more assistance tonight because he'll be so tired, but when we left he was doing good.

I got to hold him again!!!!! He was so comfy he fell asleep for a bit.

Weight 3lbs 4oz

day 34:

One family is smilng because they are going home today after being here 6 weeks, another family is sitting in the lounge holding hands and looking somber, the baby next to us we just overheard is sick....it's only 9:30 in the morning. I've never felt so helpless as I do when I sit here surrounded by these little miniature people. Most of them, like Henry, can't even cry because they have tubes going down there noses or mouth. The only sound you hear is monitors beeping and the alarms when someone decides to hold their breath.

Rounds haven't started so we don't know if Henry is still going to be extubated, very anxious...we'll see.