Tuesday, December 29, 2009

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

Sunday, December 27, 2009

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 ;)

Wednesday, December 16, 2009

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 :)

Tuesday, December 15, 2009

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!!

Tuesday, December 8, 2009

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.

Monday, December 7, 2009

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!!!

Sunday, November 29, 2009

Day 71: 10 Weeks....a whole summer vacation

I can not fathom that it has been 10 weeks since Henry entered this world. Nor can I fathom that we have visiting a hospital daily for 10 weeks to see our son. You'd think it gets easier but it defintely does not. If I was still pregnant I would be huge and uncomfortable but atleast I would know the end is in sight. I don't know when this ends. When he finally does come home a whole new chapter begins. I'm so excited for that but the thought is also very overwhelming.

The dr told me on Thanksgiving that Henry is most likely coming home on oxygen. He said he has only done this 4 times in 16 years but our son really needs it. He is doing great with his feedings (with a major exception today) and he is gaining weight so the only thing holding him back is crappy lungs.

We had a little setback yesterday. He was having difficulty maintaining his oxygen levels on the nasal cannual (nose prongs) so they decided to put him back on CPAP. The dr had told me yesterday afternoon that this was a possiblity and by last night it was reality. Driving in today I was not looking forward to seeing him back on his scuba gear. It's a reminder that he has problems. When he just had the little prongs, we could see his face and it was so much nicer. When i got to the NICU today I even hestitated before i went to his crib...ugh. One of the nurses told me she wanted to cry when she came in and saw him..join the club. She said her and 3 other nurses had a long stern talk with Henry this morning..i thought that was cute.

We took him off CPAP for his noon feeding and he was doing pretty well with me holding the o2 near his face. He CHUGGED 3/4th of the bottle in 5 minutes and then choked and then stopped breathing in my arms and turned blue. The nurse came right over suctioned his mouth and he was back to pink cheeks very quickly. so much fun.
We gave him a break and then i gave him back the bottle to finsh, which he did..and then he spit it back up, a little even got in my eye. Good times.

So then i held him skin to skin for about 45 minutes with just the oxygen but his o2 saturation level hovered around 80 instead of high 90's and then he went down in the 70's the alarms started beeping and we decided to put him back in his crib on CPAP.

I left pretty soon after because i felt the damn rising..........

Two steps forward, one step back.

Thursday, November 26, 2009

Day 68: Happy Thanksgiving!!!

1
OUR FIRST FAMILY PHOTO!!!!!!!!!!!!!!

Today was awesome, we were allowed to bring Bella in and we took our first family photo. It was soo awesome to finally be able to do that!!!

Went down to the hospital in the morning to feed him, he took a whole bottle again! Jamie came down with Bella and my parents and we quickly snuck her in. She seemed only slightly interested in him, all the crying babies and monitors held her attention much more LOL

After the hostpital we went to my cousins for Thanksgiving dinner. We had such a great time, it was so awesome to see everyone and just relax. Bella had an awesome time playing with the kids!

We quick stopped back at the hospital on our way home to say goodnight, he just looks so good!

I am so thankful for so much, we have such amazing family and friends!! And the fact that we have two children I still think is unbelievable!!! We are so blessed. We will get through whatever challenges lay ahead for Henry, hopefully there are not many.


Wednesday, November 25, 2009

Day 67: What a week!!

In the past week Henry has literally turned the corner! He is off CPAP and he drank his first bottle!!! AND last night he weighed 4 pounds 15 ounces...he might be 5lbs for Thanksgiving!!!

He is loving being off CPAP and having those tubes..or "scuba gear" as my dad calls it, no longer shoved up his nose..so much happier. He has small prongs up his nose now called nasal cannula, they supply him with a little oxygen assistance but everything else he is doing on his own. Finally his lungs are working correctly! His feeding tube is also out of his mouth and going in through his nose, i think that makes him a lot happier as well, having nothing in his mouth.

I called Monday morning to check on him and his nurse says to me "He is so awesome..he drank the whole bottle!" I was shocked, the day before he drank 3cc's, and the very next day he chugged 35! That is so amazing! We had been warned that babies having difficulty when it comes to feeding and this sometimes can take a while. On Tuesday we tried but because he gets a little rice cereal with his formula it kept clogging although he was sucking really hard he didn't get anything and then he got tired so we finished the feed through the tube. Yesterday he wasn't interested and last night he was exhausted from an eye exam so the nurse didn't want to push him anymore. Today I got in for his 9am feeding and he downed 40 cc's! I know it probably doesn't sound that amazing, but in his short little life this is a MAJOR accomplishment!!!!!!! GO HENRY!!!!

Thursday, November 19, 2009

Day 60: He's so awesome




Great day with Henry today! We did kangaroo for 2 hours...my butt and arms were sooo sore. 4 pounds doesn't sound like alot but my arm will highly disagree! He slept the whole time i was holding him and his lungs stayed very saturated off the machine, I held oxygen close to his face to help him out a little but he did so good! He is loving his new crib, he looks so happy and much more comfortable.

They took him off Zantax and put him on Prilosac, it's a different type of medicine for acid reflux..hopefully it does the trick because he is still uncomfortable when eating. His oxygen assistance is at 26-30, regular air is 21..so we're getting
close(er). He tried the bottle again today and did pretty good, they are not actually trying to feed him with it they just give him a little to get used to the taste and having something in his mouth. He also has to learn how to suck, swallow and breath all at once..this could take a bit of time. The rest of his feedings are still by tube which goes directly to his stomach.

He is now 4lbs 10.8oz!!!!!!!! Absolutely amazing!

Best laid plans...

Walking into the hospital this morning I saw yet another happy grandparent walking out with balloons and flowers...trailing not far behind them the happy couple carrying their baby in the car seat. I swear I must arrive every day at discharge time...
I know our time is coming but it also reminds me of the way things didn't go. When we finally settled into the idea of being pregnant i was soooo excited to be "normal". We did it on our own, no drugs, no accupuncture, no prodecures, no drs, no nurses...100% natural...I can't even begin to describe how shocking that is to me even now.
Soon after becoming pregnant i thought about the delivery...I was so excited. I pretty much thought I would never have this opportunity again and I was so thrilled to be blessed with this chance. I also even thought for one totally insane moment about not having drugs...really experiencing birth and feeling everything...and then my sanity came back. Even with drugs I knew the experience would be amazing. After the baby was born they would immediately put him in my arms, and we'd all cry just like on TV. Then the grandparents would come and lots of visitors and the room would be filled with balloons and flowers from everyone who was so thrilled for us. And I would finally get the picture I had been imagining for months...me, Jamie, Bella and our new baby all curled up in my hospital bed with HUGE smiles on our faces. Our first family photo.

Best laid plans......

I have thought about this over and over and I get upset each time. I feel robbed. I feel robbed of the remainder of my pregnancy and of all the joyful moments that so many others get to experience. It's the little stuff sometimes that can mean so much.

BUT, as I start to get upset I remember that we now have a daughter and a son and we are SO lucky. That's the big important stuff that far out shadows the little lost moments.

Jamie and I finally have the family we have dreamed of and talked about for years, and soon we will finally have our first family photo.

Tuesday, November 17, 2009

Day 58: CRIB!!!


I walked into the NICU today and I asked the nurse how Henry was as I was putting my stuff in the locker, she said look for yourself. I look passed her and there he is in a CRIB! No more incubator!!!!!!!!!!!!!!!!!! That is huge!!! They also have him in a baby seat so he is sitting more up right, hoping this would help with the reflux. He seemed very happy in it! I held him for a while, he actually held his oxygen tube, it was cute. He was off CPAP and doing really well.
Dr Wong, the respitory specialist and world renown Dr and creator of CPAP came to see him today. He had cared for Henry while he was a Columbia and he was at this hospital giving a lecture on CPAP so he stopped by. He was very impressed with his size, and commented on his growing cheeks :)

He had an eye exam yesterday and so far everything still looks good. The eye dr will be back next week to check again. Poor thing hates having his eyes dialated though!

Yesterday he had his first bath. I was so excited at first that he had a bath and got to get out of the incubator but then i was bummed because I had missed it! I wish they had called to tell me they were going to do it. The nurses took a bunch of pictures to give to us which was nice. Tomorrow he is going to attempt to start on the botte...I made the nurse leave a note on his crib that says "Do not bottle feed Henry until mommy arrives!" No way am I missing another first.

Monday, November 16, 2009

8 Weeks Old

Day 1

Day 56

Last week was a crazy long week. Henry developed acid reflux which lead to a few episodes of him puking up his formula, gagging on it, which lead to him holding his breath and then his heart rate dropping. They started him on Zantax and added rice cereal to his formula in order to thicken it. Both seem to be helping because the episodes got progressively better as the week went on but still happened. It happened to Jamie and I both while we were holding him, he would start gagging and turn purple and then ashy...so scary. Over the weekend they decided to have a GI specialist come take a look at him today and see if there are any actual problems.

I turned 35 last week! We went out saturday night and my husband made plans for our friends to meet us out. I was surprised and so happy! We had a great time and I am so thankful to have such awesome family and friends. We both feel bad though, our brains are totally fried and there are people we would have loved to have seen but totally forgot to get in touch :(



CONGRATULATIONS to Mike & Kim Machiski on the birth of their twin daughters Emma & Maddy 11/14/09. And to Jeanna & John Donelan on the birth of their daughter Addison 11/15/09. Henry now has LOTS of girls to choose from ;)

Wednesday, November 11, 2009

Day 52: Rough Day

SO i came in this morning to see Henry around 9:45 when I got here they told me I couldn't come in to the NICU (AGAIN!) because they were doing a procedure. I said I'd come back in a bit because I was going to the NICU parents meeting from 10-11. I went to the meeting it was great. It was good to see kids who have been in Henry's position doing so well now. It was also hard because it made everything seem real. I've been going through all this thinking atleast he doesn't have cancer or something else, at least he is going to be ok. I haven't really been allowing myself to think that this is HELL and it's not fair to be going through this. Which I guess is all good, but i guess it's good to also validate that it sucks and it's ok to be upset..and no it's not fair he got so sick.

So after the meeting I went back to the NICU and as soon as I walked in the Dr came right over. She told me the reason they couldn't let me in was because Henry has stopped breathing and they were trying to revive him. They said he started gagging and puked up all his food and at some point he just stopped breathing and turned blue. They had to "bag" him for 2 minutes before he started breathing again. They don't know if there will be any repercussions from it...but as the day went on he was fine. I held him for a long time and he was absolutely fine. I'm spent. Seriously spent.

When he was first born and it was all crazy and he was so sick it was easier to deal with things because we were in the "crazy mode" every day was something and you just dealt with it. Now he is supposed to be on the up swing, we're not supposed to be worried every day...everything is supposed to be fine now. Or so we thought. He is fine now, sleeping very nicely.

Jamie and I have been here all day now. We just went to dinner and then got ice cream while the nurses did their shift change. If i ring that bell again and they won't let us in I might lose it...

Tuesday, November 10, 2009

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.

Saturday, November 7, 2009

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.

Friday, November 6, 2009

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.

Wednesday, November 4, 2009

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!!

Monday, November 2, 2009

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.

Sunday, November 1, 2009

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!



Tuesday, October 27, 2009

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.

"

Friday, October 23, 2009

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.

Thursday, October 22, 2009

Day 33: Resting

Henry is doing good today, he was still a little out of it. They gave him morphine this morning because he looked a little uncomfortable. When the Dr came for rounds she said no more morphine since it was making him sluggish with his breathing and they needed him to work harder, he would be given Tylenol if he needed anything. He was very agitated and did not like to be bothered. He would stop breathing on his own again and set off the alarms. So i pretty much left him alone. It was hysterical though every time the Dr walked by or said something or the nurse opened his incubator he would do the same thing!! It was amazing to see how observant the little guy is. The nurse said it happens a lot with babies, they get upset after a while because they associate those sounds with someone bothering them...needles, thermometers, suctions, diaper changes, xrays...the poor kid hasn't probably gotten a full hour sleep since he was born with all that has been done to him!! :(

They said they would leave him alone as much as possible today so he could rest because hopefully tomorrow is a big day. They are going to extubate him!!!!!!!!!!!!!!!!!!!!! The Dr is hoping to take him off the ventilator and on to CPAP tomorrow, this is HUGE!! I'm nervous though because that means he needs to breath on his own, which he isn't a fan of but the nurse assured me it's fine. He will be watched closely and his settings tonight will be dropped very low to get him used to the idea of doing the work himself.

So excited!!!!!!

Wednesday, October 21, 2009

Chronic Lung Disease

People have been asking us what Henry has or how is he and I don't really know how to explain because he will be ok but it's going to take a long time and we have a lot to deal with before he's "ok". He has Chronic Lung Disease, not sure why the "chronic" part is there since he will eventually get better.

I have no idea how to explain it but this site literally explains what he has gone through, going through and what's to come. Hope this helps!! :-)
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html


Chronic Lung Disease (Bronchopulmonary Dysplasia)

What is chronic lung disease?
Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD).



What causes chronic lung disease?
CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:
prematurity - the lungs, especially the air sacs, are not fully developed

low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)

oxygen use (high concentrations of oxygen can damage the cells of the lungs)

mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)



Who is affected by chronic lung disease?
Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:
birth at less than 34 weeks gestation

birthweight less than 2,000 grams (4 pounds 6 1/2 ounces)

hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.

pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.

patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.

Caucasian, male babies

maternal womb infection (chorioamnionitis)

a family history of asthma



What are the symptoms of chronic lung disease?
The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:
respiratory distress (rapid breathing, flaring of the nostrils, chest retractions)

continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.



How is chronic lung disease diagnosed?
Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 36 weeks gestational age. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.


Treatment of chronic lung disease:
Specific treatment for CLD will be determined by your baby's physician based on:
your baby's gestational age, overall health, and medical history
extent of the disease
your baby's tolerance for specific medications, procedures, or therapies
expectations for the course of the disease
your opinion or preference
Treatment of CLD may include:
extra oxygen (to make up for the decreased breathing ability of the damaged lungs)

mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing

medications such as:

bronchodilators (to help open the airways)
steroids (to help reduce inflammation)

limiting fluids and giving a diuretic medication to help reduce excess fluid which can worsen breathing ability

nutrition (to help the baby and the lungs grow)

immunization against lung infection by respiratory syncytial virus (RSV) and influenza
CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized.

Day 32: Recovery

We got in his morning about 8:30 and they said he actually had a pretty good night. The nurse gave him some morphine this morning because she thought he looked uncomfortable. I tried to touch him and he stopped breathing and set off the alarms...he pretty much did that all day, he REALLY wanted to be left alone. (the ventilator still breaths for him when he does that)

At rounds the Dr said she was very happy with how everything went yesterday. She was surprised by the need for 2 clips, but she said the hole was pretty big. She said it also could have been due to the fact that he is "old" and "big" haha, normally it is done on smaller preemies because babies his age would have either had the hole close on their own or been given medication earlier to close it but he was too sick in the beginning to get the meds and it can not be given after 14 days...which is how he ended up in surgery.

The Dr said she hopes to have him off the ventilator with in the next 48hrs and on to C-PAP
When infants are disconnected from a mechanical ventilator, they often require a form of assisted breathing called nasal continuous positive airway pressure (CPAP). A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.http://www.thechildrenshospital.org/wellness/info/parents/20823.aspx

She said this is optimistic but she really would like him on it by the weekend...fingers crossed :)

PDA Surgery

Patent Ductus Arteriosus (PDA)

The ductus arteriosus is a short blood vessel that connects the main blood vessel supplying the lungs to the aorta, the main blood vessel that leaves the heart. Its function in the unborn baby is to allow blood to bypass the lungs, because oxygen for the blood comes from the mother and not from breathing air. In full-term babies, the ductus arteriosus closes shortly after birth, but it frequently stays open in premature babies. When this happens, excess blood flows into the lungs and can cause breathing difficulties and sometimes heart failure. Patent ductus arteriosus (PDA) is often treated with a medication called indomethacin or ibuprofen, which is successful in closing the ductus arteriosus in more than 80% of infants requiring these medications. However, if medical therapy fails, then surgery may be required to close the ductus.


**Right after surgery, enjoying his drug induced sleep!**


**Henry's war wound from surgery, on his left side**


**The happy daddy post surgery!**

Day 31: Surgery Day


**Jamie held his little elephant during the surgery..i had his little bear!**


UGH...this could possibly have been the longest day ever. On Monday they told us the surgery would be today, in the early afternoon, but when I went in for rounds this morning they said his had been pushed back to later in the day because a more serious case had presented itself overnight. So 12pm...1pm...2pm....3pm...go by, I took a walk through Washington Heights to take my mind of things...that'll do it!! lol

At about 2 we still hadn't heard anything and the nurse mentioned it might get pushed to the next day. NO WAY could I handle waiting another day. Finally at 3 something the surgeon came and said the surgery was on and they would start prepping soon. Yeah I wanted to pretty much throw up but i was happy it was finally going to be over.

Jamie had been waiting at work so I called him and he headed to the hospital. Finally about 4:45 they came and got him..it sucked, plain and simple. I started to lose it but quickly stopped, thinking I have a lot of tears waiting to come out and was scared I wouldn't know how to stop the flow. We headed down to get something to eat and wait. Luckily it is a quick surgery. We went back up at 6 and the nurse said he would be back soon and she would come get us when he was all set up again. About 10 minutes later the mother of the baby next to us came peeking in the room we were waiting in and told us he was back...that was so sweet of her, she was so happy for us...even her husband was looking for us out in the family lounge :)

Before we got a chance to go see him the surgeons found us and told us everything went great. They said he "behaved" and everything went smoothly. The hole in his heart was actually really big so they had to use 2 clips to close it but it was all done!! They said he would be sluggish for the night and need extra assistance from the ventilator but everything would be fine. We went to see him and he looked great!!! It was such a relief! He opened his eyes a couple of times but just for a second or so he definetly was out of it.

We stayed till about 9 to make sure everything was ok, we were so beat and finally had to head home. SO HAPPY that is over with!!!!!! Now we can move forward.

Monday, October 19, 2009

I HELD MY SON!!!!

I finally got to hold him!!! It was so awesome!! When I walked in I was looking at him and thinking he got bigger and then when she put him in my arms the reality of how small he is hit me. I just kept staring at him, I still can not believe we made him, it's unbelievable. Every day I wish he didn't have to be born so soon and go through all this stuff, but it is nice getting to meet him a little earlier :)





Sunday, October 18, 2009

Preeclampsia

What is Preeclampsia?

Preeclampsia is a disorder that occurs only during pregnancy and the postpartum period and affects both the mother and the unborn baby. Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms.

Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy), though it can occur earlier. Proper prenatal care is essential to diagnose and manage preeclampsia. Preeclampsia, Pregnancy Induced Hypertension (PIH) and toxemia are closely related conditions. HELLP Syndrome and eclampsia are other manifestations of the same syndrome. It is important to note that research shows that more women die from preeclampsia than eclampsia and one is not necessarily more serious than the other.

Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.

Last Updated: July 19, 2008
© 2000 - 2009 Preeclampsia Foundation

www.preeclampsia.org



www.

Friday, October 16, 2009

Day 27

Jamie and I were at the hospital last night until about 9:30 and then back this morning at 8....so tired. My mom took a picture of me and bella today and I actually have dark circles around my eyes. Lovely.

Yesterday Henry had a bit of a rough day, we're not sure if something was wrong with his breathing tube like it kept getting stuck or he was just filled with so much fluids and it was getting clogged but the alarms were going off all day saying he was having trouble breathing. We don't freak out anymore but it's still makes us very anxious. The night nurse said she worked on him alot last night to break up his chest congestion and this morning things seemed better. Today was actually a pretty quiet day while I was there. His breathing was good, his blood tests for gases were coming back good so I was happy.

I just talked to jamie who went back to the hospital after work and he said Henry was exhausted and not responding well to being fed (through a tube). They did a bunch of work on him after I left and he was totally worn out. The nurse called the Dr and she said to stop feeing him for the night with the formula to give him a break...he is continually get nutrients through IV's or PICC lines so he's not starving in any way :)

Hopefully he gets some good rest tonight. Jamie said the nurse tonight sucks...she's not forthcoming with info and she's making him feel like he is in the way....that's pretty annoying, hopefully we don't have her again. He said she is good with Henry and that is all that matters.

Thursday, October 15, 2009

Wednesday, October 14, 2009

Day 25: Groundhog Day

The Dr actually pointed out that today was day 25....if you asked me i would have said it was day 7 or something...i truly have no idea what day it is or how long this has been going on. Part of me feels like he was just born yesterday and all the rest is just a bad dream. Actually it feels like "Groudhog Day"...every day is exactly the same and i'm walking through a fog..pretty much thinking WTF? Wake up exhausted, drive an hour to the city, sit with Henry, listen to the Dr talk about my son and his "severely damaged lungs", using words i have no clue what they mean, listening to endless beeps and alarms as Henry and other babies forget to breathe, read a little, day dream of when this will be over, pack up, say I love you to my son and drive the hour back home, walk in the door to the biggest smile on Bella's face, play with her, eat dinner and go to bed. Somewhere in there Jamie and I get to see eachother...usually at the hospital. It's a very strange exsistence right now...

Tuesday, October 13, 2009

Grow Baby Grow!

Henry is now 3lbs 1.9oz!!

He is a little monster, yesterday he ripped out his breathing tube, giving himself a bloody now :( and today he has been trying to take out his breathing tube! I wish he didn't need any of it, it's probably not the most comfortable thing...but atleast he won't remember any of this.

The Dr told us today that he needs 2 days of the blood culture to be negative for the infection before they will make a decision on the surgery. Tomorrow we are going to sit down and talk with her a little more in depthly to get a better understanding of what has happened and what comes next as well as the future. I was told by the nurses that most likely he will be at CP until his due date, which is another 9 weeks and then transferred back to Westchester...give or take some time..

Monday, October 12, 2009

Some Bella Time




One Step Forward Two Steps Back

As of Thursday everything looked awesome. Henry seemed to be doing really well, breathing more and more on his own...they even said I would most likely be able to hold him this weekend. We were so excited. I go in Friday morning to find out that he has a hole in his heart and is going to need surgery. The hole is called a PDA and is relatively normal. All babies have this hole in utero but it closes when they are born. Since Henry was born so early it did not close up and since he was so sick in the beginning they were not able to give him medications to help it close, now it is too late for meds and he must have surgery. The surgery is a relatively minor procedure yet he will still be put out and as with any surgery there are risks..so we're a little anxious. For the surgery they make a cut in his side under his lungs and go in and staple the hole closed. The surgery is actually going to make him to start to get a lot better as now his blood flow will be working properly which will help his lungs start to clear up and function normal.

The surgery was scheduled for Monday..but by Friday afternoon we learned he also had a possible infection! UGH. They were doing a blood culture over the weekend to see if he does have one, which they believe he most likely does. Mondays surgery will be postponed until the infection is under control. They started him on antibiotics on Friday. We will find out today about noon about the infection.

Monday, October 5, 2009

A Good Day!

As of this morning we were told that Henry's lung were not clearing up on their own, the right lung is collapsed and there is air bubbles in it. They were going to have the respiratory therapist come take a look and possibly do some procedure to help him. Other than that they said he was doing well.

As of tonight when Jamie went to the hospital after work Henry was doing really well! He was on the lowest level of oxygen assistance since he was born AND he seems to be taking care of the air in his lungs on his own! They also lowered the pressure on the ventilator so he is actually doing more work on his own. Today was a good day.

Sunday, October 4, 2009

Bella Met Her LIttle Brother!!

We went to the hospital today with my parents and Bella...this was the first time she was meeting Henry. As you can imagine she was thrilled! lol She saw him for about 2 seconds before trying to tap on his incubator, when I moved her away she started to scream, so Mima and Poppy took her back out to the waiting room where she had a blast entertaining everyone.
.
Henry looked really good. We all decided he looks just like Jamie, we don't know whose nose he has since it's covered with tape, but we'll see soon enough. He looks a little bigger, Jamie said he had been able to see his heart beating and now he thinks his chest is filling out. I think his head looks bigger and his features are getting more "babyish".

I saw him get his diaper changed for the first time...the diaper is sooo small!!!!

I wish I could hold him, that is so hard. The most i have done is touch his hand..he did wrap his fingers around mine, which was pretty cool

Friday, September 25, 2009

Out Of the Hospital

I got out of the hospital yesterday but the Dr would not allow me to go to the city to see Henry....he made a point of saying this in front of my parents and Jamie so that there was no chance i went. He said because I was recovering from major surgery, being sick from preeclampsia and still have my blood pressure erratic that if i did not take it easy I would be back in the hospital.
So, like a good (exhausted) girl i went home yesterday and went to bed. This morning my dad drove me down to Columbia, Jamie had spent the night so he met me out front.
I don't know what I was expecting but it took everything i had not to burst into tears when i saw him. He is so small and had so many tubes and stuff all over him...it was so hard. They said he is doing really well, and he is only 5 days old so it is going to take time but all i wanted to do was pick him up and hold him...make him healthy.
I still can't fathom all this...even so, i can't even begin to explain how blessed jamie and i both feel. Just a little over a year ago life looked so different...and with in 13 months we go from no children..to two. We have a son and a daughter and it is so absolutely amazing. I just keep picturing them playing together in a couple of months(years..) and i get so excited. It's awesome.

We're taking this all day but day and each day he gets just a teeny step better!!

First Visit

I forgot how small he was!! It was so hard to go see him at the hospital after almost a week. He was covered with so many tubes and machines are beeping non stop...totally insane. I just wish he was still in my belly.



Monday, September 21, 2009

3am...Your Baby is Sick


When he was first born they were actually very happy with how he was doing, but by the middle of the night things had changed. The Dr came in at midnight and said that Henry was not doing as well as he hoped and he felt it was best if he was transported to Columbia Presbyterian where they were more equipped to take care of sick preemies. Mind you I am drugged up and freaking out at this point...why is this happening?? Luckily Jamie had spent the night in my room with me so I wasn't alone.

At about 3am the transport had arrived to take him, they wheeled him into my room in what I call the "space pod" so I could say goodbye. It sucked, I was totally freaked out..i really didn't understand what was going on. Jamie decided to go down to the city with them, which I was so happy about. He sent me texts the entire night, letting me know when they had arrived, when he was settled in and all the things that they were saying.

It was a long night...

Saturday, September 19, 2009

Happy Anniversary!! It's a BOY!




At 4am I woke up to go to the bathroom and my chest killed. I tried to take a breath, it hurt so bad I started to cough. I called the nurse. She came in took my blood pressure and it was 190/110. She called in another nurse with another BP machine...again it was high. This is one sign the the PreE was getting worse. Another nurse came in..and within 5 minutes there are 5 nurses in my room talking and poking and looking anxious. By 4;30 they had called the Dr and he was on his way in. About 5am they called Jamie and told him I was having trouble breathing and he should come in. The next hour was totally insane. All at once my clothes were being taken off, gown put on, IV's, catheters in and wheeled out to prep for surgery. I was having this baby now.

Jamie made it just in time. They explained to him what was going on. The "bomb" had gone off, my blood pressure was off the charts and I was having congestive heart failure, the baby needed to come out now. The C Section was so creepy, I repeated that over and over to Jamie...ick, i totally didn't like it. I could feel everything!! It was soo awesome though when they took the baby out and said "It's a boy!!".

We did it!! We made a baby!! So amazing :-)

Thursday, September 17, 2009

Preeclampsia

On Thursday I met with the high risk Dr I had been seeing in the beginning of my pregnancy. The first time we met with her she reviewed my file from this pregnancy and the previous one and determined I had placenta issues. She said that she felt that was the reason why I lost Sam, and there was nothing that could have been done. She said this pregnancy would be watched closely.
So when we met with her on Thursday she did an ultra sound and said immediately that I had severe preeclampsia. The babies stomach was small compared to the rest of his body, which meant he was not getting the nutrients from the placenta that he was supposed to be in order to grow. She said I was not going home until the baby was born and that could be in a day, a week a month. She said I was a ticking time bomb just waiting to go off.... I called Jamie crying once again. Why why why couldnt this just be a normal pregnancy????

Wednesday, September 16, 2009

How it Began


For a couple of weeks I was really not feeling well, completely exhausted but I just figured that was natural I was chasing Bella around and I was pregnant but it just getting worse. Friday, September 11th I went shoe shopping...what an adventure, NOTHING fit. I went from 6 1/2 and was now purchasing a size 9 shoe...huh?? And by the next morning that shoe barely fit. I'm sitting getting my hair done watching my feet puff up by the minute. Again, pregnant, swelling is normal, right?? So that night we leave Bella with Jamie's parents pack up and head to LI for a wedding. My shoes, again barely fit. I pretty much sat the whole night. The next morning I woke up and they were HUGE, but I ignore them. On the way home we stop by Jones Beach and take a nice walk. Who knew it was the last peaceful time alone before our world totally went insane.



On the way home I started noticing my hands were getting puffy. I suddenly remembered the high risk Dr telling me that I was at risk for Preeclampsia, I looked it up on the web and started reading the symptoms to Jamie. I kind of felt like I was overreacting..but it seemed possible.

When we got home I could barely walk and my mother in law made me call the dr she said my face looked swollen too. Who wants to call and bother a Dr on a Sunday when most likely it's totally normal?? But I did, thank God.

He also said it was probably nothing but to meet him at the hospital. So we got back car. My blood pressure was a little high and there was protein in my urine, both signs of PreE. He decided he wanted me to stay for the night for observations. He wanted an hourly check of my BP and a 24 urine collection. So i spent the a very uncomfortable night having the stupid BP wake me up every hour on the hour.

About 11am the next morning, one of the other Dr's from my practice said I could go home but to come to the office the next day, Tuesday.

So Tuesday I go in my BP is really high, they make me lay down on my left side for 10 minute take it again and it's all good. So he says come back again tomorrow to see the high risk Dr.

Wednesday I go in they do a full work up, check the baby and tell me I am to go to the hospital for more observations. It was Wednesday and I would be there atleast until Sunday. They still were not convinced it was PreE but all the signs were saying so and they were starting to getting worried.

We went home got my stuff, I called Jamie at work and cried, I was just so frustrated this whole pregnancy all I kept thinking about was how I wanted to be "normal" have a "normal" pregnancy...this was not part of my plan.