March 31: Ethan's Crazy 'Do

Ethan is now taking regular baths and the nurses are having some fun with his hair. He's had some crazy 'do's the last two days and I had to share the pictures. He can't quite rock the Maddox mohawk yet...think his hair needs to fill in a little more first...;-).

We're still moving forward. Ethan's got the OK to take a bottle for every feed, but still hasn't been able to do so. The nurses don't want to force him, so it's in their discretion whether he gets a bottle or if they gavage feed him. His respiratory rate was high today, but he did have an eye exam this morning and saw his physical therapist (both of which came back normal), so the nurse on duty thought he may just be tired out and decided to skip his 1pm bottle. Ethan reacted to this is a very positive manner. Before the 4pm check, he was wide awake and making it very apparent that he was ready for a bottle by mouthing anything he could...his thumb, his whole fist, my finger when he got a hold of it, and even at one point, he went for my shirt. His RR still being up, his nurse got out the aspirator and pulled two huge boogers out of his nose. I have no idea how he was breathing around those things. After that, his breathing was not as hard and it was game on...both Jon and I were able to feed him by bottle...me at his 4pm and Jon at his 7pm feed. He's doing so great. His coordination and master of the bottle gives us reassurance that it's not going to be too much longer when he'll take a bottle every time. He's up to 40ml per feed as of today as well (he was at 36ml).

He also has not had a Brady for 2 days. We are not on Brady watch yet, but this is another good sign. With everything seemingly happening so fast, Jon and I realized this weekend that we need to get some classes in soon: "Infant CPR" and "Taking your Baby Home". We'll be trying to fit these in this week still if we can...we're waiting on the April schedule to figure out our plan of action.

After the classes and the regular bottle feeds, the next (not so subtle) queue that we're getting closer will be that the doctors ask us to bring in his car seat. They will test him by sitting him in it for an hour to make sure he handles it well. Yay!

We're trying not to get too ahead of ourselves. One day at a time right now and we're happy with every days progress and just trying to stay in the moment. We realize how lucky we are that Ethan is as healthy as he is given the situation and realize we're just so blessed to have him in our lives. We can wait a few extra days to bring him home if need be provided he comes home for good...happy and healthy.

March 30: In the Home Stretch...

That is what the doctor said to me this weekend. "We're in the home stretch now." What a geat 6 words.

Ethan will be at 37 weeks gestational age this Friday, which is considered full term if you were to deliver at this time. He is weighing in at a hearty 4lb 10oz. He is taking the bottle at every feed. After a couple of days of showing us he can keep up with his feedings, he'll be on Brady watch. He'll have to make it 5 days in a row without a heart rate drop. This could take a while as he still has 1-2 per day, but he'll grow out of them. Can we really be almost there?

I'm having such mixed emotions. Impatience, anxiety, fear, overwhelming love. I want him home so badly, but all of a sudden I'm wondering if he's being rushed? This has been the longest 10 weeks of my life, but at the same time, can it already be time to start thinking of the next steps...life outside the NICU?

For the first time yesterday, he cried when I put him down. I was getting ready to leave, so I put him back and tucked him in and he scrunched up his cute little face and wailed. He doesn't cry often, so I was taken aback. I picked him back up and he snuggled in and stopped. Does he really understand who I am? Was he really upset I let him go or was he just trying to poop? I don't really care, my heart melted. I know I say it over and over, but every day, it becomes harder to leave him. Soon we won't have to.

March 26: Getting Closer...

Things seem to be really taking off with Ethan. As you all know, he did pretty well with his first bottle, getting through all but the last 5ml Tuesday night. The doctors put him on a once/shift bottle feeding schedule, which is basically 2/day. Bottle feeding is exhausting for preemies when they first start, so they want to take it slow. The nurses know my schedule so saved his Wednesday afternoon feeding for me. I was looking forward to this all day at work. After getting all settled in, we hit a road block...he didn't want to open his mouth. He would purse his little lips and I had to patiently wait for a small opening to stick the bottle in. My patience won out and I finally did get it in, and it was worth it, he sucked enthusiastically and drained the bottle in no time. It was a great birthday present. He's a natural. I can tell he's going to be a good eater.

Today when I showed up, I got the news that they were upping his bottle feeds to every 6 hours since he was doing so well. Yay! Also, they had a 'drop down' on his checks. They are no longer doing his full checks every 3 hours, they will now be doing them every 6. The nurse on duty said he's getting closer...to coming home that is :) All good steps in the right direction!! He is also at 4lbs 6 oz now, he is fitting into all of his preemie clothes. He looks so cute. Unfortunately, I have no new pictures because the battery drained on my camera and I can't find my charger. Seriously, I can't keep track of anything these days!

So, today was a really good day. With all of the good news and another bottle feed under our belt, we're heading full steam forward towards that go home date. He was wide awake after we finished the bottle, so we got to hang out and play. Well, play is really me catching his little waving hands when he's flailing them about. But it's damn entertaining. Auntie Shell got to stop by and they got cuddle time as well. Unfortunately for Auntie Shell, Ethan had a bad bout of gas and she sat in his stinky fumes for most of her visit. Oops. I think her comment was "I thought babies were supposed to smell good." Said with watery eyes. Ha!

March 25: Ethan's First Bottle

Another big milestone was hit yesterday. We were able to bottle feed Ethan for the first time and in usual Ethan style, he was a champ. :-)

Usually, I don't spend late evenings at the hospital, but I started work again this week (just until Ethan comes home), so got a late start yesterday. After work and getting errands finished, it was 6:30pm. Jon and I decided to have dinner and do a late visit to the little monkey. We got to the hospital at 7:30pm and I called dibs on holding him first (very mature, I know). We had a great nurse on duty (Katie) that hadn't seen Ethan since his first days and told us how excited she was to have him again. She loved all of his hair :) She was very sweet and I loved her immediately because she thought Ethan was adorable. (He is of course).

I digress. He was supposed to have another eye exam yesterday, so we asked about it. It hadn't been charted, so Katie called in Ethan's resident doctor to see if he had any news. The doctor didn't. But when there, he gave us his update. He said Ethan was doing great. They were still watching his respiratory rate, but said that he thought that it was time to introduce the bottle to him. I was thrilled! I have only been waiting for this for a month. It was about 8:30pm when we got this news and Katie said that we would do his 10pm check early so we could try this provided his repiratory rate stayed around 60-70. Of course, we stared at the monitors. I also gave Jon the chance to hold him, since I wanted him back for the feeding :). The transition wasn't as smooth as we would have liked and he had a de-sat. After the de-sat, his RR was really high. We worked hard to calm him. Katie gently warned us that if it didn't normalize, that we would have to wait. I totally understood this...he needs to be ready and I was trying hard to hide my disappointment. But the little guy came through for us. By the time that his checks started and I got his temperature and diaper changed, his RR was in the 50's...perfect. And, he was wide awake! The stars were aligning.

Katie took control first. She wrapped him up like a burrito, then showed me the preemie hold for feeding and how to burp him and such. Then it was my turn. He's so little and the hold for preemies seems like it would be awkward, but much to my surprise, I got the hang of it right away. We had to coerce the nipple into his mouth, which was quite humorous for us. Once we got the nipple in, Ethan just stared at me with these big, bewildered eyes. It was so cute, but you had to wonder what he was thinking, the look was priceless. I held my breath, hoping that he wouldn't start choking, and then we heard a loud sucking noise. It was awesome! Right away, his instincts set in. He still stared at me with huge eyes, but would do 3-4 sucks and then stop and breathe for 3 seconds, then a few sucks, then breathe. It was adorable.

The plan was to stop him at 10ml and burp him, but he sucked down 15ml before we knew it. I burped him and as on queue, a little air came up. His first burp...ahhh. ;) We started feeding him again and he really sucked it down. So much so, that with only 5 ml left of his feeding, he must have gotten some of the milk down the wrong tube and had a little choking fit. That was a bit scary. His oxygen sat went down the lowest I've ever seen it, but Katie talked us through it and he worked it all out and didn't even fuss.

If all goes well, I'll get to try this all over again at 4pm today. The whole experience was so awesome and it was made better than Jon and I were both there together to do this with him.

I'll post more pictures later after work. Just had to get this post out to give you all of the good news.

To answer Jen's question from the comments section: he seems to love the swaddling. Who knew, right? He was such a sprawler when in the isolette. But now that he's out, he has to wear clothes and always has a hat and blankets on him and it doesn't seem to bother him. As he grows, he isn't able to move around as much as he once did. All the extra weight and stuff. Although when burping him last night, he picked his head up out of my hands a couple of times. That still is so weird to me.

And to Laurie, who left a comment on the last entry. Congratulations to you and your new son, Canyon! Mine and Jon's thoughts are with you through this time. When Jon read me your comments last night during dinner, I couldn't stop crying. It's not an easy road when your world suddenly slams you into a new direction. Once the shock of it all falls away, it helps to gain support from where ever you can find it! We've been lucky to have such great family and friends there with us through this whole experience. If Ethan's story was able to help you through any part of this, we are so humbled and happy at the same time. Thank you for letting us in on your story.

When we started this, we had no idea that it would it would gain as much interest as it has. I am always hearing about someone outside of our friends/family group that had this passed on to then and now they are followers. I can't tell you how much this means to us (and makes me a little nervous as well...I'm not the best writer... :). Thank you.

March 21: Ethan's (New) Pad

Ethan did it. He hit 4lbs yesterday! Not only did he hit 4lbs, he went straight to 4lbs 2oz...a 6 oz gain in one day! Well, it should have been only a 5 oz gain, since he had a big poop and lost an ounce. But that happened after the official daily weigh in. Too much information?? :-)

He is officially out of the isolette and Jon and I are so beyond happy about this. It's been over 24 hours and he is regulating his body temperature well. We are able to take him in and out of his bed by ourselves, so it allows us much more flexibility. Jon loves it since he hates sitting still and now can stand up and walk around (a little bit anyways) :)

He will have his cannula for another week to be on the safe side, but really, that is less of a disappointment for me now with his big news. It's a safety precaution that is necessary and my earlier disappointment was just my impatience of this whole situation shining through. I've tempered myself a bit and know that it's just a matter of time before he's home and we can't rush anything. His respiratory rate is a little better. Still too high to try feeding him by bottle, but hopefully we'll be able to try over the next couple of days. He is showing us he is interested in sucking. He's given a pacifier with a little milk on it when we do his feedings and he is pretty enthusiastic about it. So, all signs point in the right direction.

Not much else to report today. Just the big, big news. :) Thanks for all of your good thoughts and prayers. I know they helped in his great progress.

March 19: Back on the Cannula

We have a winner from the survey! Thank you to everyone who played along. It was fun to see the votes come in. In the end, Picture #2 won by 5 votes, so we have a new banner picture above. :)

Ethan's high respiratory rate woes have still not been resolved. I was able to have a small chat with our attending doctor today, Dr Kahn. She does not seem overly worried, although it's frustrating for us. We just want to keep progressing. I guess this is what they were talking about when they said 2 steps forward, one step back.

Some steps to help resolve the issue are in affect. He is back on the cannula until further notice. It may be that the avioli in his lungs may have constricted. The way Dr Khan explained it was that he has spent his little life getting breathing support. This has helped the avioli to stay open although his lungs are premature. He might have been weaned too early and because of this, the avioli were shrinking without the extra help. He may just need help to keep them open for awhile longer. This explanation was helpful to me and made sense. At least it was something. They are not sure this is the case, of course, and are just taking precautions.

The second thing they did was give him lasix, which is a diuretic. This dehydrated him and made him pee a lot, with the end result being that if there was any wetness in his lungs, it would dry them out. Because of the lasix, he lost water weight. UGH!! This was a tough one as the elusive 4lb mark has been hanging over our heads for a week now. I thought he would have hit it by now but instead we went backwards. I know it's temporary and I'm trying not to be disappointed, but it's really hard. Hopefully one of the two above things will bring about a solution to all of this. If not, they have other things they can look at. I won't go into those now as hopefully we won't have to go down that road.

So, we go into the weekend without meeting my personal set goals. They will slip to next week. Without him being moved into an open crib, there is no bath time. And we can't feed him by bottle until his resp. rate goes down for fear he may choke. We'll get there. The one good thing is that his whole experience is teaching me patience. Never been one of my strong suits, but I have no choice now.

On a positive note, (as I probably sound pretty down above and that is not completely the case), the nurses have shown me how to take Ethan in and out of his isolette, so I can move him around as much as I want without waiting for a nurse. We are spending a lot more holding time because of it and it gives an added amount of flexibility. Auntie Shell gets to hold him almost every day, which is fun. And he is up to 33 ml in his feeds as his 'full feed' has gone up again due to his age/size. He's tolerating the increases really well.

March 17: ...and a step back

Just a quick update as there have been some changes since the last post. I should know not to get too far ahead of myself, it comes back to bite me. We've had setbacks over the last couple of days. Ethan's respiratory rate is still higher than it should be and hasn't normalized. It's been consistently above 100 where the doctors would like to see it 60 or under. No one can pinpoint why this is happening. He looks like he's comfortable and doesn't seem under stress. His doctors are stumped, so they are throwing everything at him. He was given another blood transfusion...still high. They did (another) chest x-ray to make sure his lungs aren't wet. This too came back normal. They are doing a heart ultrasound sometime tonight. He's never had one of these, so Tracy his nurse is thinking this is a good thing anyways. He is also going through more blood tests and finally, they put the cannula back in to see if he just is getting tired of breathing on his own, although his blood/oxygen saturation rates are looking great. We'll see if any of the above will help.

We're a little confused on all of this and are not sure if we should be worried or if it's just part of the process of being only 34weeks gestational age. No one is freaking out and the doctors seem calm. Sigh.

In good news, he gained 2 ounces. He's now up to 3lbs 13oz or 1740 grams. Only 2 1/2 ounces (60 grams) to go to 4lbs. He also had another eye test today, which came back normal. He will now have one once a week for awhile as his eyes are going through a rapid development phase.

Again, I ask you to send your good thoughts Ethan and pray that the respiratory rate thing will turn out to be a non-issue. Please, please, please make it a non-issue.

March 15: New Poll - Which is your favorite picture?

We've been taking so many pictures as the days goes by, that I wanted to do another poll. You know, the one that I said we would do weekly, but have only done once? Oh, well. :) The winning picture gets to take over the header of the blog. Vote to the right by the end of Wednesday!

Jon and I spent the afternoon at the hospital today. Ethan is doing great, which I don't get tired of reporting. He is up to full feeds as of today! 30ml or 1 full ounce. Although, he's hit a wall on weight gain to our frustration. He's still at 3lbs 11oz after 3 days. Ugh! It's so frustrating. We are (un)patiently waiting for that golden 4lb mark.

Tracy, our primary nurse, made the off hand comment yesterday before leaving for her weekend: "Just think, he'll hit 4lbs and after that, all he needs to do is show us he can handle eating on his own and he's out of here." It made my heart almost stop. I know it's not as easy as all that: he needs to regulate his body temperature (which he seems to handle really well even before 4lbs) and stop the Brady's for 5 days straight. Although the Brady episodes are a lot less, he still seems to have 1 or 2 per day. Mostly, when he is trying to poop. Apparently pooping is tough business. He scared the hell out of me yesterday. I was feeding him and all of a sudden, his alarm bells went off out of nowhere. Two nurses were next to me within seconds. I realized he was in the middle of one of these Brady's. The next second, we all heard a loud, vibrating noise coming from his diaper and his face was all red. Like I said, pooping is hard work. Hopefully he'll get the hang of it soon :)

And lastly, like Tracy says, he needs to learn how to eat. He is still feeding through the gavage running through his nose. Although he hit 34 weeks yesterday (yes, only 34 weeks), his respiratory rate is still running slightly high, so they haven't given me the chance to try feeding him by mouth. Hopefully, I'll be able to report that we tried this in the next couple of days and we can start moving towards a go home date!! Ok, I gotta stop, I'm getting ahead of myself.

It's still all good news though and we just have to be patient... it's only a matter of time now. Whether it's 2 weeks or 4 weeks will depend on Ethan. Until that happens, we have some fun things to look forward to this week:

1) hitting 4lbs!
2) bassinet time
3) we get to give him a real bath in a tub for the first time :)
and
4) hopefully, feeding by mouth

Keep him in your thoughts and pray that this week, we'll hit all of the above milestones.

I wanted to send out a thank you to everyone for the fun comments you are leaving. It's so great to know that you are all out there reading and thinking about Ethan and we love reading them! Hopefully we'll be able to keep the good news coming!!

PS..check out the videos that are posted below the poll. They're small and Ethan isn't doing much...just showing off what he does best....looking freakin' adorable.

March 13: Big Day!

Yesterday was a big day. Auntie Shell finally got the chance to hold Ethan. And he didn't disappoint. He was awake and smiling through most of the hold. The smiling may have been from what he was working on...there were a few vibrations coming from his little butt, but whatever, it was cute either way.

He is now up to 3lbs 11 oz. His feeds are going up to 28ml today and he's doing great without his cannula. His respitory rate has been running a little high, but that should drop as he gets bigger and stronger. The best thing is that he is having very little brady's at this point. He truly has hit another level. And can I mention that he's so cute I can't stand it????

Jon or I will post more after today's visit. Gotta run!

March 11: Day by Day & Makin' Progress

Yesterday was another good day for Ethan. He is doing well breathing on his own and had only one drop in his respiratory rate, but that is only because his was lying on his stomach and he positioned his head straight down into the bed. The nurse said that when she came over to check on him, she had to laugh a little because he had both arms straight out on both sides and his face buried in the blankets. She said she picked him up and his noise was all mushed in!

Ethan is wearing clothes these days and is better able to control his own body temperature now that he's putting on more weight. The temperature setting in his isolette is at the lowest setting now and he's handling it well. Soon enough, he'll be in a bassinet. Also, Ethan's nurse noticed that he had been in the the same isolette since his birth and wanted to give him a fresh home, so now he has a shiny new isolette. Nothing fancy, just a new one, but it has more window space. Today his feedings will go up to 21 ml and he is digesting his food well enough. Hopefully we'll be able to feed him by bottle soon and get that last tube off his face!

The doctors continue to monitor his right kidney and said the latest ultrasound shows that the cyst grew from 2cm to 3cm. They say it's nothing to be concerned with and that they will just check it again month. Either way, his left kidney is working fine, I believe the nurse referred to his left kidney as working like a "Ferrari". Interesting...you can interpret that how ever you would like.

All in all, Ethan is looking much more like a little baby and we are both anxious to bring him home. Otis really wants to lick him, Nicole and I want to go into his bedroom to see him, not the hospital, and none of us want to deal with parking at the hospital anymore.

Mar 9: No More Cannula

I wanted to post a quick update as we had a very good day. When I got to the hospital, the first thing I noticed was that Ethan's cannula was missing. Yep, missing! He is tube free and looks adorable! He was breathing on his own and is doing great. He didn't have any drops at all with it out. This is a big, big milestone for us and one of the first signs that he is getting closer to coming home. We are thrilled.

He's up to 16ml on his feedings and his digestive system is working perfectly. He's also steadily gaining weight, now up to 1525 grams (or 3lbs 6oz). He needs to hit 1800 grams and be 34 weeks before he moves to the bassinet. He'll be 34 weeks on Saturday and I have a feeling it won't be too much longer than that he'll hit his 1800 grams (4lbs).

I'll have more to post tomorrow as I do have new stories to share...but for now, it's getting late and Jon and I are just getting to bed. We're exhausted after a very busy weekend. I'll also be sure to post new pictures.

Goodnight.

March 6: Li'l Pumkin

I don't have much time, but have been sitting on these adorable pictures of Ethan for 2 days and needed to post them for all of you to see. When Shell and I came in on Wednesday, Tracy had Ethan dressed in a little orange onesie. He was so cute, I almost died. :)

He is officially back on track. As of yesterday, he was weighing in at 3lbs 1oz. He started his regular feedings at 3ml as of 1pm yesterday. At his 4pm feeding, he had no residual left in his tummy, which is a great sign. Keep your fingers crossed that he can keep it up! They also brought him back down to Level 1 on his air flow. Next step, good bye cannula.

We also found out that at 4lbs, he'll be taken out of his isolette and will be in just a basic basinette. If he keeps gaining weight like he is, we could possibly see this in the next 10 days I would hope. It's nice to have these milestones to look forward to. Keeps us sane and our spirits up. This would also mean that he will be easier to hold and that Auntie Shell will finally get her chance!

I just have to say that everyone has been so great over the past 10 days as we got through Ethan's infection. Thank you for all of your well wishes: the calls, emails, posts and texts. And it was nice to be able to have visitors again. Jen, Marisa and Chris all stopped by this week, and of course Shell. If you are reading this, it was great to be able to see all of you and get in a few laughs.

Off to the hospital!

March 4: 3 POUNDS!

Hello, it’s Jon again. Last night we had another huge milestone. After I held Ethan for 2 hours last night, I ran out to get the camera. While I was gone, the nurses changed out his bedding and decided to clean him up a little for the camera. When I got back with the camera, they had a little surprise for me. Ethan had gained 3 ounces and tipped the scales at 3 pounds! Nicole and I had secretly been hoping to hit the 3 pound mark before Saturday, but as usual, Ethan is ahead of the curve. I think the hospital had some extra nurses on duty last night so instead of 1, Ethan had 2 nurses going goo goo over how cute he was and how proud they were of his latest achievement.

Holding Ethan for a full 2 hours was great. That is the longest I’ve ever held him and for anyone that knows me, I have a REALLY tough time sitting still for 10 minutes, let alone 2 hours. But, I learned to adapt and had a few long conversations with Ethan. I told him all about Otis and how he’ll try to lick him (right after he licked himself), that Otis will be jealous of him and how Otis will try to steal his toys from him. There are so many things you can do and say to someone who can’t understand a word you say, the possibilities are endless…

Like I said, the nurses got Ethan all cleaned up for a few photos and in his usual fashion after being held and bundled up, he woke up and stretched out.

In other updates, Ethan had his eye exam today and there is no news, which is good news. The doctors just said he looks normal for his developmental age and they would check back again in 2 weeks. He will have another x-ray of his belly taken today and if all goes well, they will start to feed him again tonight or tomorrow. With a little luck, he’ll get back up to full feedings soon!

March 2: Ethan's got an Attitude

Quick little story to start the blog today. On Auntie Shell's visits it's almost a given that Ethan is sleeping. She usually just misses him awake; either she gets there right after an energy burst or as soon as she leaves, he wakes up. Despite of this, she can't help but touch him anyway. It's all become kind of a joke. So, today when she came for a visit over her lunch, per usual, Ethan was passed out. And per usual, she couldn't help but touch him and bug him a little. Above is a post of a picture of his response to her today...he wasn't havin' it. :)

Ethan's still doing well on his antibiotics. If tomorrow's x-ray looks good, they will start his feeds again on Wednesday, so cross your fingers that everything goes as planned. On the not such good news, he gets his ROP eye exam tomorrow. Preemies are at a bigger risk for several types of eye problems. They say this test is not 'comfortable' for the baby. It sounds a little worse than not 'comfortable'. They will give him eye drops to numb the eyes before starting, then open the eye as far as possible to look at all parts of the eye...pretty invasive procedure...ugh. I know this is something that needs to be done, but I have been dreading this test ever since they told us about it. I can't even think about them doing this to my little boy. I'll be happy when it's all over.

Back to better news...he is up to 2lbs 13 oz today, so his growth is still going steady. I noticed today that his ID band fit. It's a big moment as last week when they tried to put it on his ankle, it would just fall off. It's hard to believe that just one week could make such a difference! His little toes and fingers are even beginning to look chubby...(hopefully they don't get as chubby as mommy's toes...but that's another story entirely)!

Unfortunately, I wasn't able to hold him today. I had a nurse that didn't like to wake him if he's sleeping. Well, he never woke up completely the whole time I was there. We still had a good day though...I spent a lot of the time reading to him. Thank you to Nancy and Staci for the awesome books! We read "On the Day You Were Born", "You are my I Love You", "ABC I Love You" and "The Little Train that Could". It's been a long time since I've read children's books and I don't know if I was just a little emotional or what, but those books were so sweet, I kept choking up. I think Ethan enjoyed them. He kept his eyes closed while reading, but when I would stop, he would open his eyes and look around until I started reading again, he would close them again. It was all very touching and we found a new way to bond.

Since I started with a picture of Ethan with an attitude, I'll end with him looking all sweet :)

PS... A couple of you have told me that you haven't been able to post comments. I checked out the settings and it looks like I had disabled this somehow...oops! You should now be able to leave comments again.