2.5 Hours

Ethan had 2.5 hours on his room air trial yesterday. He did really well. He was on the lower end of the approved range, but I expect that every time I move him up in duration. I think he will show us higher numbers today. I liken it to a new workout--you tend to be more tired because your body is doing something it hasn't done in a while (or ever). Every time you change up the workout, your body is a little tired again because it is doing something new. But, with time, your endurance gets stronger and you are able to do even more. Ethan has been oxygen dependent for well over a year, so this is a change for him. He is doing wonderfully though!!

I never heard back from our pulmonary doc. I was a little bummed, but I am sure we will connect next week. Below is a bunch of pictures.


I found these chocolate crackers (I love Annie products--no "yucky" ingredients!) and he liked them. He would keep them in his mouth long enough to get a taste, but still doesn't really swallow.


Ethan is working on his computer.


I know I say this a lot, but Ethan loves Maverick. He figured out that he can get on top of Maverick. Lots of hugs.


(Don't mind the laundry on the couch...)


More hugs for Maverick


Ethan LOVES to help me cook. He insists on helping me every night. I love it. Plus, it is such a great time to talk about food, math, measuring, etc.


Watching for trucks. You may notice some tape on his ankles/lower legs. The tape is from PT to try to help correct some his issues.


The other car I got him was too small, so I had to take it back. He can get on and off and push backwards...we are still working on forward.


Maverick gets hugs on a daily basis.

Working

It looks like the videos are working again! Yay! They had taken so long to load that I was frustrated they weren't working. Today Ethan had another 2 hour trial and I was surprised he was at 97/98% after the 2 hours. It was very exciting!

He got his third round of Synagis today. With Craig not feeling well, I was glad Ethan got it today. Ethan, on the other hand, was not nearly as happy. I don't blame him in the least bit--I hate needles too! It has come to the point where our nurse has to ready the shots in the kitchen and hide them as she comes back to the family room. He knew though, so it didn't really change anything. And, the funny part was that afterwards he got up, pointed to the door, pointed to her and then waived bye-bye. Guess her welcome was over!

Tomorrow I will be having a phone chat with our pulmonary doctor about the next steps with Ethan. He had left a message today and at the end said, "I am planning on taking the trach out of your little boy." What a great way to end a message! :)

Ethan started on the Prevacid tonight. I was told it would take a week to see any changes, so I guess we will wait and see.

2 hours

Ethan passed his 2 hour challenge! I meant to move to 2 hours yesterday, but lost track of time so he only had 1.5 hours. While on his trail he had a good time chasing Maverick around the kitchen table. It was quite cute.

I know that the videos from the previous entry aren't working. They were in the beginning, so I don't know why that changed. I have tried to reload them and that doesn't seem to have worked. I will still work on it!

Craig isn't feeling that great, so if you could pray for him, I would appreciate it. When one of us gets sick is makes things harder as we try to keep Ethan healthy (as well as the other person). That makes the load on the other person harder too, as Ethan is more high needs compared to most toddlers. And, being pregnant, I really don't want to get sick!!

1.5 Hours

Today was Ethan's third day of his 1.5 hour room air trials. He is doing great! The first two days his saturations were low, yet still within the approved levels. Today he was higher which tells me that it takes his body a few days to get his endurance up. I will probably give him four days at each time frame before I move him up 30 minutes. I know I have said this before, but he loves the freedom. It is neat to watch.


Ethan will come "tell" me that his oxygen has become disconnected. Here he was trying to attach it himself. (Which, he can actually do.)



Don't worry, Maverick really does love Ethan....




We had warm weather last week and I took Ethan outside to explore the backyard without his oxygen. You will notice that he doesn't bend his knees when he stands himself up. He is starting to bend more when he walks, but that is why the grass is so great--it forces him to bend a little since it is so uneven.

Go ahead

We got the clearance to increase room air trials today! Ethan is allowed an extra 30 minutes every few days, as long as he tolerates it. Today we let him have 1.5 hours and he did great!! I will probably increase every fourth day, just to give his body time to work up the stamina. He is allowed to go as far as four hours. Once he reaches that point we will contact his pulmonary doctor and see what he will be allowed to do from there. It is so exciting!!

Yesterday I needed a decaf Starbucks. (Yes, NEEDED one.) I was on the phone with a friend when I decided to do part of Ethan's trial in the car. It was SO easy. (I still have to bring the suction machine, but I was going to use the drive thru, so I didn't need much else.) I just put him in his car seat and off we went. That is really easy. Wow. He enjoyed it too. He runs all over the place when he is off of the tubing. It is quite cute.

I did take him to the doctor today. We wanted to rule out an ear infection and frankly, after hearing from his home nurse (for the third or fourth week straight) that he was diminished on the right side, I wanted his doctor to listen. See, I listen to him all the time. I have learned the difference between clear, junky, diminished, wheezy, etc., and I wasn't hearing what she was hearing. At first I chalked it up to the fact that I am not a RN, so my knowledge is limited. But, honestly, I needed someone else to verify because if Ethan was coming down with something, we wanted to stop it early. I was very happy when our pediatrician said that he agreed with me and that Ethan had good breath sounds (and equal) on both sides. And, his ears look fine. Our doctor does feel that maybe Ethan is dealing with reflux, especially with all of his vomiting, so we are going to give Prevacid a try for one month. If he isn't sleeping better or acting normal at that point, we will take him off. I appreciate that our pediatrician doesn't want Ethan on any more medications than need be. (I found out that we have to have it pre-approved though, so it may take a few days before Ethan can start.)

On top of it all, I was very happy to see how Ethan responded to being at the doctor's office. He started to get upset during the weighting/height part, but once we were in the room, he was fine. When his doctor walked in he let out a big smile and waived hello. Very sweet. But, then again, he has always liked his doctors. (Maybe that is because the nurses have to do the dirty parts like give shots!) Either way, I just felt better that he didn't melt down.

New phases

Ethan may have entered a new phase...we think. However, we are not ruling out the possibility that something is going on internally. The past four or so days he has been clingy and very needy. His sleep habits have changed dramatically as well. He does not have a fever, but I am suspicious as to whether he has an ear infection.

Ethan has never had trouble sleeping--like I have said before, I can count the times he did not go down well for a nap on one hand. The last few days, however, have been long. He just cries and cries. He wants to be rocked and will fall asleep if he is upright, but once he is put down he gets so upset. At first I was thinking it was separation anxiety because if I left the room he would melt down. There have been a few episodes of me hearing him vomit while I am in the bathroom, all because he is crying so hard that I left. Then the coughing starts. Normally intense coughing leads to his trach activating his gag reflux and the rest, well, ends up on my floor or all over him.

I was chalking it up to typical toddler behavior and maybe that is what it is. The last thing that leads to me think that maybe it is an ear infection is that I went to take his temperature (something I do all the time) and he got very upset. We have one of the ear probe thermometers and it was his reaction that made me think that maybe all of this is related. I have an email out to our pediatrician, so I hope to hear back soon.

Busy days

What a busy few days it has been! School started back up for me this past week and I had work obligations both Friday and Saturday. Craig and Ethan had some quality time together. Things continue to go well for all of us.

While Ethan still sounds diminished in his right lung, we haven't seen anything else come out of it. He is picking up speed as he chases Maverick and has enjoyed a few outings. The weather has been beautiful lately and I hope to get a walk in this afternoon before potential snow moves in tomorrow. Ethan's room air challenges are still going wonderfully, but we haven't moved past the 1 hour mark yet. I hope to get clearance soon because I think he could do it. And, he adores the freedom. We laugh the entire hour he is off of the oxygen because he just runs around so excited to be free. He almost doesn't know what to do with himself. He now is trying cut three molars--the first still hasn't broken all the way through! It has been about 5 weeks! Poor guy.

Craig and I went on a date last night, which was very fun and much needed. Our friend (and Ethan's first primary nurse from PSL) came up to spend the afternoon with him. He had a blast and cried when they left. (He cries when most people he knows leave, including us.) But he rebounds quickly and loved having so much attention. She also had her two teenage daughters with her, so Ethan had A LOT Of attention!

Ice cubes

Maverick loves ice cubes. Ethan has caught on to this fact and really enjoys feeding endless ice cubes to Maverick. I look forward to this summer when Ethan (hopefully!) is decannulated and off of oxygen (at least during the day) so that I can send the two buddies outside to play.



(Ethan was on a room air trial at the time so that is why he doesn't have the tube attached to his neck.)

High Risk Ultrasound

What an afternoon! Don't worry, it isn't bad news at all. I tried to put Ethan down a half hour early because I wanted Craig to come with me to the appointment. I can count the times on one hand that Ethan has not gone down well for a nap and today was one of those days. He finally went to sleep about 45 minutes later. My options were for Craig to stay home and let Ethan sleep or wake up Ethan and take him with us. Well, I didn't want to do this alone and I knew Craig wanted to be there. I broke my cardinal rule of never waking up Ethan and got him ready.

We got to the office on time but then proceeded to wait 1.5 HOURS! I have never, ever had to wait that long for a scheduled appointment. It was so frustrating because Ethan could have slept and had an entire nap. By the time we were seen, Ethan was done because he was in the stroller for all that time, was tired and getting hungry. Overall though, I have to say he was very well behaved.

On to the good parts: baby boy #2 is perfect! No problems at all! Yay! It was so nice to see everything functioning perfectly and to have a doctor confirm it. And, oddly enough, while I had been told this was going to be a different group, it ended up being the same doctor who first diagnosed Ethan with TOF. I thought the doctor would be a little interested in seeing Ethan considering he had been one to tell us that Ethan couldn't survive, but he really wasn't that interested at all. Oh well. My concern was more that baby #2 got a good once over from a very qualified doctor. Baby was very active, as normal, but the doctor and tech were able to see everything they needed to see. Once we were back there, it was a little rushed because they were so far behind. The only bummer of the appointment was that I never got to ask the one question that has been weighing on my mind all these weeks: what are the chances that this baby will come early? But, if that is the only bummer, it is no big deal and with all the doctors we know, I am sure I can track down the answer!

We are simply thrilled that baby looks perfect! He didn't pose for any really cute profile pictures, but I did get a couple of pictures of his behind. :) We are really feeling God's protection and grace right now. We are so thankful to Him for providing a healthy baby. Thank you for all of your prayers!

Here's the thing

Tomorrow I have my high risk ultrasound with a perinatologist. I wouldn't say that I am nervous because after seeing that baby's heart is normal, a lot of anxiety went away. However, like I have said before, we spent so much time in the NICU and learned of a multitude of things that can go wrong with the development. The quad screen came back negative, so that is also reassuring. (Although, those are not 100% accurate.)

But, here is the thing--we don't know why I went into labor at 27 weeks last time. It is assumed that it was because of Ethan's heart defect, but no one really knows. Half the time there is a known medical reason why a woman went into early labor and I am sure that is helpful to know. When you don't know, you wonder whether or not it is going to happen again. We don't dwell on it, but we do think about it. I mean, how could we not? Having a 3 lb baby at 29 weeks (we held him off for two weeks) is not something that I wish on any woman. Maybe the perinatologist will be able to give me further insights tomorrow--statistics about how often the second baby comes early, etc. We have noticed many things different about this pregnancy--even my belly. It is smaller compared to when I was 21 weeks with Ethan.

So, we wait and pray. And, really, we don't dwell all day on it. I wouldn't even say we think about it everyday. But, we do talk about it and try to prepare. We trust God's plan. He has shown His control and grace a multitude of times through our adventure with Ethan.

Room Air Trials

We started room air trials with Ethan this past week. He is allowed to be without oxygen once a day for one hour. He has had a total of four trials. It seems like he can hold his own for one hour. When hooked up to the oxygen, his saturation level is around 98/99. Without oxygen, he saturates between 93/94, which is within the approved range. We are still waiting on clearance to move past one hour or to move to two trials a day.

We can tell that Ethan LOVES the freedom. He can go to any room in the house without getting stuck by tubing. We are encouraged that he can go without oxygen for any level of time!! We hope and pray that he can try to go a little longer so that he can experience being tube-free for a little bit longer each day. When we have the oxygen turned off, it is SO quiet in here! Since we run a concentrator, there is normally a constant hum in the background. We both have stopped and realized how much of a difference it makes when it is turned off!

Crackers

You know the days.... You are trying to get so many things done: the laundry, the vacuuming, dusting, dishes, etc., etc. Plus, you are working full time and taking care of a busy toddler. Dinner needs to be made as well. And, maybe, you are 20 weeks pregnant and tired. It is in those moments that the toddler does the following:



I had to laugh. I had thrown away a box of stale crackers and taken the trash out of the can with intentions of taking it to the garage. I ran (ok, walked) up the stairs to put away some laundry and when I came back down I realized that Ethan had taken the box out of the trash. Notice where Maverick is sitting? I bet Mav was thinking, "Oooh, you are so going to be in trouble when mom comes back...I think I will just sit here and look innocent." He was very well behaved! And, at least Ethan was trying to eat, right?!

Babycook

Most of you know that I prefer to make my own babyfood. Making my own formula is also something I try to do. We still keep his formula in his diet because it is easy for when we are out and about. Ethan doesn't eat pureed food--he is past that. Well, he is past it in age, but not skill. He wants what we have on our plates and while doesn't swallow much of it, he does put it in his mouth willingly. (A big step.) Since he has eight teeth, he will bite off pieces but then has trouble once the pieces are in his mouth.

I used to use a lot of dishes to make the homemade babyfood. My pot, steamer pot and blender/mini Cuisinart were part of the process. It ends up being a lot to clean up, especially since only the Cuisinart could go into the dishwasher. However, the perfect solution has come! For a long time I have wanted the Beaba Babycook--a babyfood maker. My mother-in-law got it for me for Christmas and I was more then excited!!

It is small, yet can make a good amount of food. You can steam, blend, reheat and cook all in one and it is all dishwasher safe. (Do I sound like an infomercial yet?) I am telling you, if you enjoy all the healthy benefits of making your own baby food, this is well worth the money. What normally took me a while to do, takes no more then 15 minutes.


It isn't very big and doesn't take up a lot of room.


You can see that after you cut up the food (this is pears) you put them in the basket for steaming. You add water to the heating compartment (using the guide on the mixing bowl--again, no extra utensils needed) and then steam. Depending on how much water you add, it automatically knows how long to steam it. I flip the switch and go back to whatever I am doing.


Once the steaming is done, the babycook will turn itself off. Then you empty the basket of perfectly steamed food into the bowl that already has the blade attached and that has the liquid from the steaming already in it. You can then puree to the consistency that you want. It is all in one and SO easy.

It is also helpful because now that baby #2 is on the way, I will use it even more especially since this baby should eat normally. I love things that make my life easier but still allow me to provide for Ethan the way I want to. It isn't cheap, but it is well worth the money. I highly recommend it. (If you haven't picked that up already!!) :)

Pictures

Here are some recent pictures:


Why eat applesauce when you can play with it?


Working on eating.



Opening gifts


The truck was big hit.


His doctor kit...we had to open all gifts after the first one. But he loves to play with them now.


And, back to the truck.


Makin a little music.


He doesn't have the hang of what he is supposed to do with his car, but he will get there soon.


Reading in the car.

More pictures to come soon! :)

New Year, New Name

Wow, what a whirlwind it has been since my last post! Craig's cousin got married on New Year's Eve, so lots of family came out for the wonderful occasion. We all got to see many cousins, uncles, aunts and grandparents (including second cousins/1st cousins once removed, etc, etc.)! It was the first time Ethan has met many of our family members and we all had a great time! He loves the attention and is a trooper, despite being very exhausted from all of the activities and lack of regular sleeping schedule.

I really need to put up some pictures, so I will get to that soon. I promise!!

Ethan is still working on that molar. He was coughing a lot the other night, but that seems to be calming down. His nurse listened to him today and did say that while he sounds clear, he also sounds diminished on the right side. We are praying that it doesn't turn into anything!! We have worked really hard at keeping him healthy so that his trach can come out in April. He did get his second Synagis shot today. We hope that by getting it, his body can have a little extra "umph" if he is fighting something. Ethan is really figuring things out now. As soon as he saw the vials Synagis, he started to get concerned. But, he recovered quickly from his shots (he gets two due to weight.)

We wish you all a very Happy New Year! I can't believe it is 2010! Wow, time really does fly. Sometimes the days feel long, but the weeks seem to go so fast!

You may have noticed a new title for the blog. I thought that the change was needed and was given this great idea from my dear friend. (Thanks Julie!!) If you are curious, the old title came from the fact that I spent three years as Dean. I adored that position and miss it dearly. I hope to return to a similar position in the future. I don't know that many people knew the origin and I never expected Ethan to have the medical issues that he does. So, the original plan for this blog was to share stories about our lives. It really has turned out to be dedicated to Ethan. (Which I don't mind at all!) So, with the new year, I decided that a new title was in order.

We hope this year is filled with blessing for all of you. Thank you so much for reading and for praying for us. We deeply appreciate it!!