February 27: Gaining Ground

Ethan is on the mend. He has looked really good the last couple of days and has been very active; yesterday especially. We kangoroo'd for 3 hours and after he was wide awake; looking around a lot and following my voice and footsteps with his eyes. It was particularly hard to leave him because of this. I was talking to his nurse about it this morning and she said that he is definitely getting to a point that he needs more attention when he's awake. He's aware of people around him and is more content if he knows someone is nearby. If THAT doesn't make me feel guilty for not being able to spend more time with him, I'm not sure what can. All I can do is keep in mind that 'this to shall pass' and soon he'll be home and we'll get to spend all the time we want together. We can all put these days behind us.

He also has gained some poundage. He's up to 1230 grams or 2oz 11 1/2 oz :) He had his biggest gain to date last night... 60 grams! We'll be seeing 3lbs before you know it!!

We are on day 5 of his 10 day antibiotics and restriction of feedings. He's doing great and there is little to no bile coming out of his little tummy anymore. They had him back down to the regular air flow today at a level 2 setting. At his worst, he was put back on high flow at level 4, so we're heading back in the right direction. He also had no drops today! Well, 2 to be honest, but they were so small and quick, we're not counting them. His head was positioned weird on one and on both he brought himself out quickly and the alarms turned themselves off before we could even react. Good day, considering his condition. His xrays of his bowels are showing a small improvement. We'll take it :)

And my last Ethan update: holding him has taken on more meaning. I think it is because he is bigger, I can feel him more. Instead of just this little lump, I can feel his legs and arms moving against me. Part of it could be that I'm more comfortable handling him and not scared that I am going to break him. I can hold him by his head and butt now with his face looking up, so we can look at each other. It's so great to be able to stare at his little face the whole time, instead of just being able to sneak kisses on the top of his head once in a while. Don't get me wrong, that was great, but this next step is awesome. I'm sure it will only keep getting better and better as he grows.

February 25: NEC

Sorry that we haven't updated in a couple of days. It was a little jarring to us to have Ethan take a turn in such a short amount of time. The doctors have diagnosed Ethan with necrotizing enterocolitis; or NEC for short. NEC is a medical condition where portions of the bowel stop working and parts of the tissue could die. The symptoms are various, but the ones that were noticed on Sunday; the green residual from his feedings and his slow digestion were what prompted the doctors to take notice and to eventually make the diagnosis. NEC is seen in approximately 10% of preemies weighing in at less than 1500 grams at birth and can be serious if it progresses; sometimes ending with surgery.

In Ethan's case, he is doing as well as can be expected; maybe even better than expected. As the doctors say, it's Ethan; of course he's doing well. They are fairly confident that he will have a full recovery with no surgery required. It is comforting to hear them say this as up until last night, they had been erring on the side of caution through this whole ordeal and not giving us anything but the facts so as to not give us false hope. So, for now, he is on antibiotics and will get his nutrition through an IV for 10 days. They have stopped his feedings in order to let his gut heal. He has been getting daily xrays and blood tests in order to catch any bacteria that may be in his blood. So far, the tests are all coming back negative (which is good) and his xrays, although concerning, have not gotten any worse. Nana, our primary doctor, told me today that he has gotten through the first few critical days without anything worsening, so she thinks that we'll just need to wait out the next 7 days and then start feeds again. He'll have to start all over at only 3 ml per feeding and work his way up to a full feed again. They'll watch him closely and with luck, he'll tolerate the feeds and we'll get back on track.

Sunday and Monday were rough on Ethan. Sunday he was poked and prodded alot and didn't get much sleep. Monday, he was listless and pale...you could really tell he wasn't feeling well. They have him all hooked up to IV's again and he has a tube down his throat to help the excess bile and air come out. But, yesterday and today he seems to be doing so much better. He just looks more healthy... more rosy and alert and he seems comfortable. He is sleeping well and when awake, doesn't fuss. If you didn't know he was sick, you would never know that something this serious was happening to him, he's just as sweet as ever.

Even with this all going on, we've seen developmental progress this week. In general, he just looks bigger. His head is growing and he's looking more and more like a full term baby every day. And today, I noticed that he is honing his suck reflex. I was able to hold him and once Tracy, our nurse, put him on my chest, he found his thumb and starting sucking away, we could hear the sucking noises as they were loud and slurpy. It was a bright spot in our day and touched our hearts as he was comforting himself. Later, after he was back in his isolette, he was opening his mouth a lot so I got his pacifier for him. He has used this before, but just for a few moments and the sucks were short. This time, the sucking was significant and we heard the sucking noise again; he kept this up for a long period of time. He stayed awake and was playing with my finger for about an hour after I held him, following my voice with his eyes as he sucked away. He's so cute and to see him do these normal baby things keeps our hopes up and will help us get through this rough period.

We'll keep you updated on his progression this week. Please keep us in your thoughts and hope that he continues to beat this infection. He's a strong little guy... and I have no doubt that between his own strength and the love and support that he continues to receive from friends and family, he will be better in no time.

February 22: Setbacks

We've had a bit of a rough weekend. Ethan has had a few issues pop up, in what seems, out of nowhere. Some of these issues are probably harder to take just because Ethan has been doing so well....I mean, we got through a full month without any set backs, so we were blindly hoping that we were out of the woods. We learned that things can change very quickly and has reminded us not to take his progress for granted.

It started yesterday. Jon and I were on our way to the hospital when we got a call from the NICU. What the doctors had been telling us would happen finally did... Ethan needed a blood transfusion. He's been borderline for awhile, but always pulled through. But, he was especially pale that day, the nurse explained, and he had been having more than normal desats. I can't even count how many times our doctor had told us this was most likely to happen at some point, so I thought I was prepared. But, I learned quickly that you can't really prepare yourself for this type of thing. We got to the hospital and went through the standard talks with the doctors and signed the consent form. Everyone assured us that he would be more alert and feel better after, but ugh...really? The little guy doesn't deserve any of the poking and prodding that he gets already, now this. I had to leave when they started to put the IV in. I can't watch them put needles into his little arm. It's unbearable.

The nurse called us back in the room and we started to feel better as Ethan was calm and border line sleeping. If he can handle it, we should be able to as well, right? I was able to hold him while the transfusion was in progress. This also helped me by feeling that I was comforting him in some way? I realize that this might be more for myself than for him, but I hope that it helped in some way. By the time we left the hospital last night, he was looking better, much more pink and rosy and only then, did we realize that he had indeed been pale..the transformation was definitely noticeable.

So, we thought this was the worst of it. We ran some errands today and got to the hospital a little later than expected. We did call in to see how he was doing and the nurse said he was fine. He had gained another 10 grams and is at 2lbs 8oz. When we got to the hospital, our nurse came up and gave us the run down. Ethan had still been having a higher amount of desats, but it seemed like they were happening when he was being fed. So they were going to pump his food in at a slower rate to hope that this took care of the situation. She also mentioned that he hadn't had a stool for a long time. She decided to give him a glycerin chip...meaning she put this up his little butt. Ugh. But again, we seemed to be more upset about the happenings than he.

Just when we thought that that was going to be it, the nurse was doing his checks and checked if there was residual left from his last feeding. Usually, he has nothing left to maybe 1ml...he has tolerated his feeds like a champ ever since they started feeding him through a gavage. So, I was pretty shocked to see quite a bit come out of him. Not only was there a lot, it was a light green color. I guess this is because of the bile. The nurse stayed calm but went to talk to his doctors, who then in turn ordered an xray.

The results of the xray showed that there was indeed a lot of stool build up, but they were unsure of why he would have so much build up or why there was so much bile in his residual. So, they are going to do more tests this evening and another xray once he has a stool. The doctors talked us through all of this but I'm still confused on what they think it may be to be honest; they went through so many possibilities. All we know is that it might be an intestinal issue and he may have to go on antibiotics. They stopped his feedings and will be providing his nutrients through IV again until they figure out what is happening with him.

The positive out of all of this is that Ethan doesn't seem sick. He is comfortable and his tummy is not sensitive at all. We are supposed to call back later tonight to see if they have any further information for us. I will post an update tomorrow morning if they are able to give us answers on what is going on. In the meantime, please keep him in your prayers.

February 20: Ethan's Chair

About 2 weeks before Ethan was born, Jon and I were on the search for the perfect glider. We had done our research, came up with a couple of brands that we liked and on one Saturday afternoon in early January, took a drive out to a store that carried the gliders we had been looking at. Once there, we even got a tutorial on what to look for. Since this chair was mainly for me and the baby, it had to fit my size, so I went from chair to chair checking them all out...needless to say, we spent an embarrassing amount of time testing out all of the options available to us. What can I say? There's not much to keep you entertained in the dead of winter when you are in the middle of your pregnancy.

We finally agreed on a Best Chair, The Bedtime Series. Next: what type of fabric? We couldn't agree. I wanted something soft and fuzzy, but Jon refused to let me get chenille or a light fabric that would show wear (always the practical one). When we got home that night, we still hadn't reached an agreement. I jumped on line and came upon a website for a little boutique shop, Twinkle Twinkle Little One, that was right on Damen and had all of the Best Chairs available for custom order. It closed in 50 minutes, so we got back in the car and drove over to see what they had available. What a cute little store! The owner was great and talked us through what her past customers have liked and what the general trends were. She also let us take the whole swatch book home with us so we could check it out in different lighting and against our own stuff. That was what we needed. We found a fabric that we agreed on almost right away (and it was soft AND fuzzy...ha!). The next day, we brought the swatches back in and ordered the chair. The shop owner thanked us and said she would be call us as soon as the chair arrived, in about 3 weeks. At the time, we would never have thought it possible that the chair and Ethan would arrive the exact same week.

Looking back, the timing was perfect...mom and dad (or the new Grandma and Grandpa Kruse) were arriving from MN the day I was to come home from the hospital; we have a small condo with only a sectional sofa in the living room, so the extra seating was going to come in handy. Jon worked out a plan with the shop owner to pick the chair up at her home since the store was closed and had it set up when we all arrived. Grandpa Kruse took the chair over immediately and broke it in for us by watching TV with his eyes closed, one of his favorite past times, more than once that week :). It was nice to get his seal of approval and to have proof that it would be comfortable for not only me, but people over 5'2".

When my parents left, Jon quickly took it over. Now every night, Jon settles in to the chair to work away on his computer or to watch TV. Not to be left out, the animals of the house have also laid claim to this chair. It started out that Ty, the cat, would lie on it... but we have a very jealous puggle roaming the house that has a tendancy to harrass Ty out of all of his favorite snoozing places and this time was no different. Now, you can find Otis sprawling out in the chair at any time that Jon is not in it with the cat glaring at him from across the room.

So, why do I go on and on about a chair? Because this chair has quickly become such an integral part of our household in such a short amount of time... and ultimately, because the chair is Ethan's. In some strange Nicole way, the chair represents Ethan. It's a physical presence in our home when he cannot be. I look at the chair and it reminds me that Ethan will be home soon to claim this special chair and it helps me get by. And in the meantime? I gain some sort of comfort in the fact that its become such a favorite and I love seeing Grandpa or Jon or even Otis enjoying it so much, as I'm sure Ethan will soon.

Ethan Progress Report...he's doing great :) After losing 20 grams yesterday, he gained 50 today and is now at 1100 grams (2lbs, 7oz). We got a good cuddle in today and it won't be too much longer until we'll try to introduce a bottle to him. 2 weeks maybe? I can't wait. We were hoping to see his cannula disappear this week, but it may be a little longer. They upped his air pressure to level 1.5 from level 1 as he was struggling a little last night. We can't be too disappointed as he's been progressing so fast. We can't look at this as much of a set back. He's one month this week, hard to believe. It's amazing to look through the pictures over the past 4 weeks and see his growth, he truly is our little miracle.

February 18 Another Good Day...

Its Jon again. Ethan is coming up on his 1 month birthday on Sunday and he's throwing a party in his incubator. The party is BYOB (bring your own bottle) and you must be less than 15" tall to attend. Please RSVP with his nurse Tracey, pod 1087D, Northwestern NICU.
Ethan continues to make progress. His weight today is 1070 grams, or 2 pounds and 5.7 ounces, that's a 20 gram increase from yesterday. Nicole and I split up the day and she went to the hospital during the day and left around 5. When I arrived at his pod around 6pm, in true Ethan style, he was passed out on his stomach with his arms spread wide, taking up the entire the bed. I have no idea where he gets this from, I swear I've never done that, really, I swear.
For today's medical update, Ethan has a shiny new breathing machine that makes bubbly noises. The nurse told me that the new machine outputs less volume of air, meaning Ethan is one step closer to breathing on his own. We are hoping that in the next few days, Ethan can be free of the breathing aids and we'll have many more pictures of his cute face. His drops in breathing are becoming fewer and fewer, which is probably making the nurses happy since they seem to be running wild taking care of all of the other babies in our unit. Since we've arrived at the NICU, we have a whole new group of babies around us.
In other news, Auntie Michelle stopped by for a visit. Nicole and I know how much she loves Ethan and we're still trying to figure out how to get Michelle her own pass to visit Ethan, so far, no luck.
All in all, Ethan is doing great. Tomorrow they will perform more tests to check on his kidney. For all of you that have sent emails or left a voice mail wishing us well, we appreciate your thoughts and we apologize for not calling back yet. Things are a little hectic.

February 16: Look at that Face

Today was a really good day. I still have a smile on my face. First, take a look at the picture... No tubes!!! Isn't he adorable?!? I can't help myself from staring at it. The tubes were out for only a short amount of time, but it was so great to be able to see him all free...and he seemed to love it. The reason we had his tubes out was b/c Ethan has been pulling out his feeding tube for the past 4 days, so Tracy decided that it was time to start running it through his nose instead of his mouth. I know this sounds gross (or it did to me anyways), but I guess when we start trying to bottle feed him, the tube will need to be through his nose until he gets the hang of eating. I also found out that they are planning to wean him from his cannula over the next couple of days. As a little test today, Tracy left his cannula out for 1/2 hour and he did great, making it pretty clear that he has a high chance of success once it's removed. So, we're slowly getting closer to being able to see that darling face tube-free forever! All these little steps are really helping it sink in that we may actually bring him home one day soon. I know, we still have a long haul, but still...every day is one day closer :)

In other awesome Ethan news, he also gained another 50 grams; his biggest one day weight gain to date. They also upped his feedings again; to 20ml. More steps in the right direction. As soon as he has enough weight on him and he can control his own body temperature, he'll be able to ditch the isolette for a open bassinet. I cannot wait. It will be easier to get access to him...and it will give Auntie Shell the opportunity to hold him...she's been patiently waiting for that day. It all seems to be within site now.

I was able to hold him for 3 hours this afternoon. It seems like it would be a long time, but it flies by so fast. He was so sweet and peaceful today, that I just couldn't let him go. As I was sitting there, Tracy and I were talking about Ethan and his progress. I built up the courage to ask her opinion on when she thought Ethan would be able to come home. We've never been able to get any response other than 'his due date', which I understand, there are a lot of variables in play. But Tracy was candid with me today. Of course, she started out by saying, this is is just an educated guess and anything could happen between then and now, blah, blah, blah, but she thinks with his progress and how he seems to tolerate everything they throw at him, she thinks early April, maybe even late March. It was just so nice to hear it! I told her about my wish of having him home by my birthday (March 25)... she said it may be a little agressive, but not completely unrealistic :) So, yes, it was a good day.

Quick Add On: I also uploaded a quick little video that Jon took yesterday. Ethan looks like he's smiling on it :) Had to share!

February 15: Big Weekend

Happy Valentines Day ...belated! I hope every one had a good weekend. We definitely did. Ethan not only hit the 2lb mark, but also went over 1000 grams for the first time! He had a 45 gram gain in one day and is up to 2lbs 3oz. I guess Jon holding him for 3 days in a row has had some positive effects on the little guy. We couldn't be happier with his weight progress. Before we know it he's going to be topping 3lbs! :) In other great Ethan news, he had a good day with fewer than usual drops in his breathing, so the doctors brought his air pressure down from a level 3 to a level 2. I was a little surprised (I say that alot don't I?) as he had been having quite a few episodes just earlier in the week. But he's doing great on the lower pressure and it was very comforting to see that his drops were still down at today's visit.

We had a big weekend of visitors at the hospital. Starting on Saturday, Larry and Theresa visited us from Milwaukee. They hadn't seen Ethan in 3 weeks. He has changed so much since then and I had such great pride being able to show him off to his Grandma and Grandpa. It makes Jon and I both feel more like a family to have family there, if that makes sense. Theresa, God bless her, brought us a bunch of frozen home-made dinners that we can just throw in the oven. We are set for at least a week!!

Sunday was a really good day as well. We drove Otis over to Jen's so Elliot and Otis could play (thank you Jen!) and then were off to the hospital. First, Nancy, who was in from Dallas, and Staci stopped by to see Ethan. We hadn't seen Nancy since before Christmas and Staci hasn't been able to stop by b/c she's been sick, so it was so good to see both of them. He was pretty alert and kept us all entertained with his smiles (I still swear they are smiles) and his rendition of a one-eyed pirate.

We then had a visit from Jody and Keith, who were at Prentice for their infant CPR class (they are due on May 8!!) It was fun catching up with them and we got to see how Jody's pregnancy is progressing. She looks so cute!! And to round out the day, Heather and Max stopped in to say hi. It was awesome to see everyone! Jody, Keith, Heather and Max were all there when I was holding Ethan, so he was passed out cold. He usually is when he is being held, he gets so comfy.

Thanks, everyone, for the visits. Jon and I loved it. Hopefully soon, we'll all get to hang out somewhere else other than the hospital, right?

Note: I do plan to put together another poll with new pictures. But it's getting late tonight, so look for it in the next couple of days. In the mean time, I've posted new pictures to the right. You'll notice that I snuck a picture of Otis in the Feb 13 album...I couldn't help myself. He's my baby too.