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.

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.

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!!!!

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.

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.

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 ;)

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...

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!