Molars

What is with those molars? Why do they take so much time to come through? And, with molars, only part comes through while the rest of the tooth strategically inflames the gums. Poor Ethan needs that molar to just pop through! He even had a little rash on his chin from the constant drool. I can see two other molars wanting to come through, but it is the lower right that is currently winning the race.

He still has such a great disposition despite how painful his gums look. Sometimes he will just sit there and point at his tooth. If he would use some other methods, I think he would feel better. I am really glad that we don't remember this stage of growth!! Actually, I am glad Ethan won't remember most of what he has been through these first 20 months!

Sweet speech

One of the many things that I love about Ethan is that he isn't the "wake up and cry type." He doesn't mind being in his crib--probably because he spent most of the first 7 months in one. (I guess he could have gone the other way after so much time.) But, when he wakes up he just talks to his animals or stands up and tries to see if there is any mischief he can get into. :)

This morning I woke up hearing him talk to his animals. Normally we know he is awake because his alarm will go off once he stands up, but some mornings he will just sit in his crib and talk. (He is often very "junky" in the morning and that sort of acts like the PMV, by blocking some of the pathway of the trach.) He can't wear the PMV while he sleeps so normally we don't hear him. But lately we can often hear him talking quietly while he patiently waits for one of us to get him. I have to say that it is such a nice way to wake up.

I had my 19 week appointment this morning and everything is perfect. By this time with Ethan, I was measuring a bit big, which we later learned was the extra amniotic fluid that had built up due to his heart condition. And, while it was about this time that things got rough with my pregnancy with Ethan, it is totally opposite this time. Now that we know this little boy's heart is fine, we are at ease. I will still have a high risk ultrasound in a couple of weeks to rule everything else out though. So far, so good!

Merry Christmas!

We hope that you and your family had a very blessed Christmas! I know we did! It has been very busy the past few days. Ethan has been great through it all, yet very tired. He has a molar trying to come through, so he is a drooling machine. But, he isn't very fussy and a little Tylenol helps at night.

We had a fun Christmas Eve and Day--both involving dinner at family and friends' homes. It is a little tricky because one of us has to follow Ethan around holding the oxygen tank. He only has about 4 feet to freedom. We still had a wonderful time though! :)

As I predicted, Ethan didn't care much for opening gifts. He just really isn't at that stage yet. Once the gift is opened he may get excited. On Christmas morning he "opened" (tore the paper once) his first gift. I took it out of the box for him to play with and he was done for the rest of the morning when it came to opening anything. I wasn't about to make him sit there and demand he open the rest of the gifts. He was happily playing nearby and every time we opened one of his gifts, we would get his attention, offer it to him and tell him the giver's name. He would look for a second and go back to what he was doing. Once the gift was opened he would come over for a look and maybe play for a few minutes before returning to what he was previously doing. In a way, it is nice that he still isn't in the "that is great, what else did I get" stage. By next year he will be much more interested in discovering what is in the packages. I was asked it if bothered me that he isn't into the gift opening thing and I said absolutely not. It is more important to me (and I know I can say us) that Ethan understands the real reason for Christmas. We had a wonderful Christmas and hope you did too.

Yesterday was a day off before we had some company today. Friends of ours and their twin girls came to spend the day. Ethan had a very good time! This coming week is also going to be busy with Craig's entire family coming to Colorado for his cousin's wedding. It is going to be a busy time! We are praying that Ethan stays healthy during this time of exposure to more people then normal. I am sure he is going to do great!

Date night!

Last night Craig and I were given a wonderful gift--a date night! With the exception of the echo on Monday, Craig and I haven't had the opportunity to have a date night for a little over a year. We had a good friend, who works on the CICU, come up to watch Ethan. She has been helping me the past two weeks, coming one morning a week so that I can get work done. She has known Ethan since his first cardiac repair and she adores him.

I know that many parents struggle to get date nights, but we struggle because we have to find someone qualified to watch Ethan. I can't get the teenager from church to watch him. Whoever watching him has to know how to handle a trach, change one in an emergent situation, know how to bag him, understand and hook up a pulse ox when he sleeps, be able to feed and burp him using a g-tube, etc, etc, etc. It is a lot to ask of someone. Not to mention, I want them to have fun with Ethan too! Plus, as every parent can relate to, it is wonderful having someone that you fully trust and who also wants what is best for your child.

We went to dinner and a movie. We haven't been to a movie together in about two years, so that was nice. Dinner was lovely because we didn't have to worry about suctioning a trach at the table and having people look on. The movie was fantastic! We went to The Blindside. I highly recommend it!! If only Hollywood would figure out that they don't need a lot of violence, sex, language or inappropriate behavior to develop an amazing story that is truly wonderful to see. The theater was empty and, once we got there, we found out it was discount Tuesday. (Even better!)

Most of all, it was a wonderful night because I got to spend time with a favorite person of mine! I immensely enjoy Craig's company and we have so much fun together. It was nice to be able to enjoy each other all while not having to worry about Ethan. We hope to continue our date nights on a somewhat regular basis, now that we have someone who has done the entire night routine with Ethan. (His routine is very involved because of changing out equipment, g-tubes, etc.) We had a blast!

A heart healthy baby...

BOY! I am already outnumbered, but in May, I will be very outnumbered! It is another boy for us! We are SO excited! I have always wanted three kids...two boys (in a row) and then a girl. So far, so good! ;) We were surprised though because I had convinced myself it was a girl.

The best and most amazing part is that his heart is perfectly healthy! Once we heard his heartbeat during the echo, we instantly knew that it was totally different compared to Ethan's beat. (Well, prior to surgery.) Ethan's heart always sounded like a washing machine, with a swishing sound. This baby's heart sounds like a galloping horse--what hearts are supposed to sound like. Then as I was watching the screen, I noticed that there wasn't any purple. With Ethan, there was always purple with the "red" and "blue" blood (out and in flowing) mixing. (Hence, no valve to stop it.) However, I only saw red and blue. My comment to the cardiologist was, "it has to be good, there is no purple!" He laughed and said that that was very true.

Everything looks great...a pulmonary valve, four chambers, etc. It was such a relief. Of course, the very small problems (if there were any) would not be seen until after birth. And, at that point, he offered to listen to the new baby, if that would make us feel better. (Most likely, I will take him up on it.) We are so blessed and thankful that God has blessed us with a baby boy, whose heart is perfect.

We also got to go to a late lunch! Our dear friend was watching Ethan (a prior nurse of his) and she gave us the option to go out afterwards. It was so wonderful! Craig and I haven't been out without Ethan in a year. (Literally!) We had such a great time and enjoyed being with each other. We are so thankful to God!

Fetal Echo

Tomorrow afternoon we will have a fetal echo. I am 18 weeks pregnant and far enough along that Ethan's cardiologist is confident he would be able to spot any abnormalities similar to what Ethan was born with. We are looking forward to the echo, but we are admittedly anxious. While we think about it, it hasn't consumed us. I mean, what can we do about it? Waiting to know is what has been challenging, but at the same time, we can't change anything. It is what it is.

We trust God completely and we are praying that this baby's heart looks perfect. (I will also have a level 3 ultrasound in a few weeks because after spending 7 months in the NICU, I am aware of way too many things that can be wrong.) We wouldn't change anything if there was anything wrong, but Craig and I both feel that finding out any and all information ahead of time better prepares us to best care for baby. Plus, now that we have one at home, we need to know what to expect. And, we know that medical technology is flawed, but we trust our cardiologist immensely and know he will do a wonderful job.

We also hope to find out if baby is a boy or girl tomorrow. That will make the day even better! :) Tonight we had a group of dear friends over for our Christmas Bible Study party and one little girl asked me if I had any dollies. I laughed because it was so darling and told her that maybe in May I would have some dollies to play with. ;)

Please pray for our appointment tomorrow and for rest tonight. I already don't sleep well with this pregnancy and with things on my mind, I may toss a little more. I will be sure to update the blog tomorrow!!

G-button

I am sorry that my posts have been so sporadic lately. It is finals week for me and I am in the middle of grading about 200 history finals. Busyness is an understatement these past few weeks!

Ethan is doing wonderfully. Over the weekend his g-button ruptured inside of his tummy. It really isn't a big deal, except for the fact that the catheters are not supposed to rupture. We don't know if some of the rubber/plastic from the inflated ballon was left in his tummy, but we figured it would pass if it was. Craig pulled out the button and just replaced it with a new one. (We always keep an extra on hand.) We both examined it and we think that most of the rubber/plastic stayed intact, allowing us to pull it out of his tummy when the button was taken out. Ethan had no clue anything was different, but he was aware of the "bath" he had in the formula. The funny part was that I was told (by many nurses) that they have never seen a button rupture in a stomach before. My response has been, "of course not, but this is Ethan...just add it to the list." :)

Outtakes

We have been very, very busy the past few days! Since the weather had been so cold, Ethan and I weren't able to get anything done for Christmas. I ran around this weekend trying to catch up and I am getting closer.

Ethan was posing for the Christmas card today. Below are some outtakes. Overall he did great. He would get really excited and want to stand up. Our biggest problem was the camera. Ethan was cooperating, but the camera was not!


A little tickle time always helps with picture taking!









In case you are wondering, yes, we did have him off of the oxygen for the pictures. It wasn't very long and we should start room air trials anyway.

Tundra

Brrr! It is cold here in Colorado! Our thick Chicago skin has thinned out over these past few years. Even if it hadn't though, it is quite cold. Last night it was -17!

Ethan isn't allowed out in this cold weather because he does not use an upper airway to warm the air before it hits his lungs. Therefore, it would just be extreme cold air entering straight into his lungs, via his trach, and that is not good.

Since Ethan has started walking he has realized that by standing up, he can squeeze his little body through spaces that crawling did not allow. And, no matter what I built to block him, he would get through it. So, I got another gate to block the other entrance to our kitchen. He realized the gate early this morning and stood at it shaking it and protesting. It was quite funny. Ethan's walking has increased in duration and speed. He is able to crawl up the stairs too, but can't get back down. We can't teach him to turn around and slide on his belly because that will lead to his g-tube being ripped out when it catches wrong.

While I never planned on concentrating on signing with Ethan, it has become more important since his verbal communication is behind with his trach. His current signs include:
Mommy
Dog (Every four legged animal is a dog.)
Airplane
More
Eat
Baby
Fish
Bird
Ball
Water

Normally, most of the early signs center around food, but since Ethan doesn't really have the same level of interest in food, he tends to focus on animals.


Ethan saw me making chocolate covered pretzels the other day and decided he wanted one. (Although he only got a plain one.)


Showing me his pretzel


This is the shopping cart his physical therapist gave us...and yes, that is my blow dryer in the cart.


Ethan and Maverick





Up he goes!

St. Nick's Day and Synagis

Happy St. Nick's Day everyone! Growing up my family always celebrated St. Nick's Day with a small gift or two. (This is from my German heritage.) We would leave our shoes outside our rooms and excitedly look in them in the morning for what St. Nick brought us while we were sleeping. Ethan had a visit from good ole St. Nick too.

And, I even though I know better, I wrapped the gifts. Ethan is still not into the whole unwrapping gifts thing at all. He prefers to look through a bag with tissue and discover what is inside. So, that is probably what I will do with most of his Christmas gifts. Even though I prefer to have a coordinating wrapping paper under the tree, if he enjoys the bags more, then that is what I should do for him. I mean, it should be about what he would like for his gifts...right? Of course, I had a hallmark bag on the ground with an ornament in it and he played with that for 40 minutes straight. He was so curious as to what was in the bag and getting it out and then putting it back in.

Ethan finally got his first Synagis shot of the season. His next needs to be given between 28-31 days from now. It came on Friday and on Monday, I will already work on getting the next one delivered. It is most effective after the second shot, when his blood levels will be at 100%. But, I was relived that he finally got it. He did fine with the shots. A few tears, but he really isn't that dramatic and after a hug and a small box, he was smiling again.


A special delivery from Ole St. Nick


Don't let this fool you. He didn't do anything with the paper...we had to do it.


Same with this one.


I get Ethan an ornament every year. This one is for his 2nd Christmas. (Actually, last year he got quite a few--baby's first Christmas, A Super Baby one, etc.)


This was much more exciting for him!!

I wonder what it will be like

All afternoon yesterday and in the middle of the night last night, I was thinking of what it will be like if Ethan gets his trach out. I started out thinking of just the diaper bag. What will it be like to only carry a diaper, wipes and maybe an extra outfit? That must be really nice. Currently my diaper bags holds the following:

-An oxygen tank
-A set of spare trach tubing
-A self inflated (thus big!) resuscitation bag
-Special clamps to cut the chain around E's neck in an emergent situation
-Other types of clamps/scissors
-Extra ties to keep his trach nose attached
-Syringes used to empty E's g-tube and replace it
-Emergency g-tube supplies
-60 ml syringe to feed Ethan
-4 Cloth diapers for when he vomits in public
-Specialized canned formula
-Clorox wipes so that I can clean supplies if they fall to the ground or clean tables when we are out to eat

After all of that, I squeeze in a small thing of wipes, one diaper and an extra shirt because he will need one when he vomits. (But, I figure those items are at every store, so I don't find them imperative to have, considering everything else.) If he gets his trach out, we also don't have to carry a suction machine around. I have the following in the suction machine bag:

-The machine, of course
-2 different sized trachs--his normal and then a size smaller should we have an emergent situation
-Saline bullets
-An extra nose
-3 HME's (these fit inside of the nose for heat, moisture exchange)
-7-8 packs of catheters
-Ethan's new oxygen attachment for his PMV

Hence, there is no need for additional weight lifting! :)

If he can wean off of oxygen, he can play at the park without wearing a tank (which he is still too young to do, so we would have to bring a big tank to the park with 50tubing...yeah, that won't get tangled!) I wouldn't have to make sure I don't walk too far from the diaper bag because when you do, you pull at Ethan's neck since he is attached to it. I could pick up Ethan and only Ethan. It is all so foreign to me.

Please don't get me wrong though--I am not trying to complain! Now that there is a serious thought that he will get his trach out, I just keep thinking of how much simpler things will be. It is just so exciting! I have reminded myself to not focus too much on April because then I may loose track of all the wonderful things that will happen between now and then. Sorry, but the idea is just so exciting!

Downsizing!!!!!

It is official! Ethan is now the proud owner of 3.5 Peds Shiley---aka, a smaller trach! More about the day below, but we are ecstatic! Praise the Lord! Ethan's bronchi look much better and, drum roll please,...we have plans to decannulate in April! I know! Can you believe it? (And, perfect timing too with baby due in May!)

The day started out a little rough. Ethan wouldn't crack a smile once we entered TCH and started crying as we entered the pre-op room. (Bronchs are done in a sterile OR room.) I got him undressed, all while giving many, many hugs, and rocked him to sleep. Every time someone entered the room, he would cry again. However, after his catnap, he was in better spirits. We were given the option to walk him back and be with him while he went under anesthesia, but we would have had to wear bunny suits and masks...two things that Ethan is very afraid and nervous about. I thought it would be rough for him to see us (the people who are supposed to comfort him) dressed like the doctors. He really liked the nurse who came by to take him down, so we decided to just let her since he wasn't upset at all. (Had he been upset, I would have taken him, but was pleased that he was much happier.

Our doctor came out pretty quickly and I was nervous when I saw him. Last time he came out that quickly, he had really bad news...news that led to open-heart surgery. But, it was just the opposite this time!! He was amazed and said everything looked SO great! There is marked improvement, so much so, that he told us to downsize Ethan trach when we got home. And, he said that he would have someone from his office call me to coordinate another bronch in April so that we could decannulate Ethan! I didn't know what to say! I started tearing up out of shear joy (and have done so throughout the day).

Ethan woke up from everything just fine. Before we left we went up to visit Ethan's neonatologist, who was amazed at how big he is and that he is walking. On our way out we ran into Ethan's cardiologist too. It was so exciting to share the amazing news with him!

Once home we downsized his trach. He did great! I feel like he is a little louder and hopefully he will learn that he can now vocalize without his PMV. Now there are a few things we are praying for: 1) that Ethan stays VERY healthy so that nothing jeopardizes him getting his trach out, 2) that his bronchi continue to stiffen (there is still an element of compression) so that they will look even better in April, and 3) that Ethan can wean off of oxygen. We were told that our goal is to have him weaned by the end of February so that we don't have to train him to wear a nasal cannula.

The one thing that is in the back of my mind is the fact that last January, his bronchi looked ok. Six months later they looked worse. But, we are very optimistic that they will continue to stiffen since he had the surgery. What a great 2nd birthday gift for Ethan (and 31st for me)! It makes us feel better about the decision to put him through such a big surgery. Seeing that it truly did what it was supposed to and that it has made such a difference is very reassuring.

We are so thankful to God. His healing hand has been on Ethan this entire time and we are blessed with how well Ethan is doing. Praise be to Him.

Tomorrow

Tomorrow we all will head down to TCH for Ethan's bronch. If everything looks good, his trach will be downsized. We hope that by downsizing, Ethan can vocalize more without the use of his PMV. The procedure is set for just before lunchtime, so we may not get back home until late in the afternoon. We will arrive two hours ahead of time and normally we have to stay at roughly 2 hours post the procedure.

Ethan has been cruising around everywhere. He has gained more and more confidence. I am always impressed at how toddlers try to squeeze their little bodies into areas that are too small. Or try to make it through any obstacles that stand in their way.

We put up our Christmas decorations over the weekend. Ethan loves to point at them every day. We have a little formal tree in the family room and our family tree in the living room. He does think that the bulbs on the formal tree are balls, but after being told they are for looking and not touching, he hasn't tried to touch them. Ethan enjoys hitting the switch to turn on both trees. It is so much fun to see his eyes light up!