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!

French Fries

It was so warm out this past Friday that we all went for a walk around the outdoor mall nearby. Neither of us are Black Friday shoppers, but it was late in the afternoon and the temperature was about to drop again on Saturday. Afterwards we went to Red Robin for some burgers. Long story, but Ethan hadn't had his afternoon "snack" (aka tube feeding) so we offered him some french fries. I thought he was going to eat them whole! We couldn't take our eyes off of him. He kept shoving the fries into his mouth and gumming on them. He didn't swallow much because every time he got a piece near the center of his tongue, he would gag and spit it out. He vomited once, but there wasn't much to come up. The great thing is that even the gag and vomit didn't stop him from putting a fry into his mouth afterwards.

Saturday night we had frozen pizza for dinner. I held off on Ethan's afternoon tube feed just to see if it would help him gum some crust. Sure enough, it did. He did the same thing with the crust. He would gum away and shove some into his mouth, although it would lead to a gag sometimes. I don't know if he knows what to do with it once the piece of food is in the middle/back of his mouth.

Letting him get hungry has always been something that works well, unless it is in the morning. If I try to give him something to eat orally for breakfast, he won't entertain it at all. I think it is because he is so hungry by that point and he doesn't eat enough to give him a sense of being full. Therefore he just gets frustrated and that is the last thing that we want to happen.

And so, we tried it again tonight. Homemade chili and corn muffins was for dinner and while the corn muffins caused quite a mess, Ethan did the same that he has done the previous two nights. The only problem is that he isn't getting a feeding in the afternoon and I want to make sure he gets what he needs nutritionally. But Craig and I have brainstormed some ideas and we think they might work. The video below shows Ethan tonight at dinner. What it doesn't show is his gag and vomit that came at the end. However, after that "episode" he reached for more to put in his mouth. And, you will also see that he pushes out any reasonable size pieces out of his mouth. But, overall, this is a huge improvement!

First Steps and Happy Thanksgiving!

Today Ethan took his first steps! I was able to catch them on film too! (Is anyone that surprised though??) :)

He has been taking the steps in increments of 4-5 and has done three sets today. As soon as he figures out what he is doing, he will sit down. What a great Thanksgiving! It was especially nice for Craig who normally does not get to see all the "firsts" since he is at work.

There are so many things for which we are grateful! First and foremost, for a Savior who gave His life so that we don't have to die. There isn't a better gift! For the forgiveness of sin and the promise of new life. We are thankful to know a God who is gracious and loving. He has given us so much these past few years. We have been truly blessed. Not only through Ethan's life, but the fact that there is food on the table and a roof over our heads. That there are jobs to go to and family to love.

Ethan amazes us daily--his sweet smile and determined nature. His steps today are another reminder of the gift God gave us. We hope you all had a wonderful Thanksgiving!!

Step 1

I just found out that step one in our Synagis journey has been completed. Yay! The pharmacy has received the enrollment form from my doctor's office. The pharmacy will deal with the insurance, which is easier because then there are only two groups involved, instead of three. In theory, we should hear an answer from the pharmacy either Friday or Monday. I am really praying that everything goes so smoothly that I hear back from them today and it is shipped on Friday. Our nurse is so nice and said that if we receive it Friday, she will come over the weekend to administer the shot. She, like me, wants Ethan to have it before he goes down for his bronch next week. Keep praying.

I am feeling better today. Ethan slept well last night but you can see his poor gums are extremely swollen.

Cold

This time I have the cold and so far, Ethan is healthy. He did have a rough night, waking seven times, and didn't sleep well today but I hope he isn't catching my cold. I think it is his teeth--he gums all day long. I am hopeful that by Thanksgiving, the cold will be gone. I would appreciate prayer for my cold, but more importantly, that Ethan does not catch it.

Still no news on the Synagis front. With me not feeling great, it makes me all the more concerned that he has not received it yet. I really would like him to have his first dose before his bronch next week. Our doctor is trying to get to the bottom of the situation.

Ethan continues to do well. He stays so busy, as shown by the pictures below. He had his weekly PT today and she continues to be very impressed by his progress. Ethan is so close to walking independently. The strength is finally there and now he just needs to get the balance. She brought him a shopping cart to have one more thing to push around. Plus, because of its distribution of weight, he has to balance more carefully then before.

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Ethan had his 2nd haircut on Sunday. It didn't quite go as well and there was definitely no dancing!


Helping Craig install the cabinet locks.


Showing Craig where the lock should be placed.


I put this one up because you can see the oxygen tubing wrapped around the table and the trach mask being pulled from his neck. This happens at least 40 times a day. He would have such freedom if he could wean from the oxygen.


A closer picture of the trach mask being pulled at his neck.

It is the little things

Tonight we all went to Olive Garden to celebrate Ethan's 1 year anniversary of coming home. (Plus, I have been seriously craving it for a few weeks.) We often have to deal with Ethan vomiting at the table, so we are usually prepared. We know the signs that it is about to happen and always pack the necessary items in his diaper bag. But, it isn't easy. People stare and I guess I can't blame them. I mean, when Ethan vomits, it isn't spit up, it is a good amount of fluid.

We were prepared when it happened tonight, but the best part was how our server handled it. Never has a server offered to help us when this has happened. Our server tonight, however, promptly came to our table with extra towels and a bag. We were shocked at his offer for help and his kind generosity. It was just the offer of help that meant so much to us. We made sure we talk to the manager and let him know about the kindness his server showed us. And, of course, we left him a very generous tip. :)

Quiet

Every mother knows the feeling...it just got way to quiet in here. Granted, unless Ethan's valve is on, it is normally pretty quiet, but he is a busy boy and when it is quiet and still, then I know something is going on. I had just filled up the container of wipes and closed it securely since Ethan likes to pull out the wipes. He wasn't that far from me, but I couldn't see him from where I was sitting. It was however, a bit too still and a bit too quiet. 132 wipes later....

What a turkey. In his quiet and still state, Ethan had managed to quickly open both parts of the wipes container and promptly remove every single wipe. When I walked around the table, I saw that the kitchen floor was decorated with wipes and that the culprit was sitting directly in the middle of the "mess." I laughed when I looked at him as he had two in his mouth, along with a large grin.

Here we go again!

It is that time of year. RSV season. Synagis season. Dealing with insurance and pharmacy season. What I didn't know this year was that I had to enroll Ethan into the Synagis program. I didn't know this because last year he received his first dose of Synagis in the hospital, so I didn't have to enroll him. Our pediatrician had ordered it back in October, so I thought I was ahead of the game. I soon learned that it didn't matter that he had ordered it because Ethan had to be enrolled in the program again this year. I started the progress at the beginning of November and we are still without a dose. Ugh. Of course, there is a certain enrollment process, including insurance giving the ok, communicating that to the pharmacy and then the pharmacy sending the dose. I spent hours on the phone today (and in the past weeks), talking to endless individuals.

Part of the problem is the AAP has recently changed the eligibility criteria for Synagis. (Of course, this is done right before RSV season, where it has sent everything into a frenzy.) I was told that the changed criteria is against the views of the CDC and the FDA. (A reminder that Synagis is not an immunization, it is antibodies.) Anyway, while the debate continues, we are without our dose. Even with the new criteria, Ethan will more than qualify because of his extensive medical background. (Some of the old criteria included heart disease, pulmonary disease and/or prematurity...yep, got all three of those!!) :) The new guidelines should not affect him, but who knows.

And so, we wait and wait. It isn't a cheap medicine, but a very important one. I think it is the frustration of knowing there is something out there to help keep my baby safe and having to wait longer for it is hard. He needs to remain well this winter so that we have the greatest possible chance of decannulation in the spring...hopefully before baby #2 arrives! I spent much of the day in prayer for this to get straightened out and for my patience. :)

What a year it has been!

I remember waking up excited and nervous. Nervous because I was so afraid we would get to the hospital and they would tell us we couldn't bring Ethan home that day--that something happened overnight and he wasn't ready. Nervous that we would walk into his room and he would be back on the ventilator. Oh, how I wanted to bring my baby home. It had been a long seven months and we were ready. We were ready to have our baby in our home. We had been waiting to take care of our baby by ourselves and make all of the decisions on our own.

We woke up early, hoping to beat as much traffic as we could down to the hospital. We were blessed by dear friends and my old colleagues/students who had placed a welcome home banner outside of our home for Ethan. We had cautiously cleared out his hospital room in the days prior. I had gifts ready for our amazing nurses and just wanted to get there. On the way down we talked about how amazing this day was--how we were going to bring home our baby boy for the first time and he was already seven months old. We had a large checklist at home: make sure the oxygen and nutrition company were coming by later in the day, call the fire department and invite them over so that they could meet Ethan and know that our house would be filled with oxygen, have the crib ready, etc., etc.

We were so relieved when we walked into Ethan's room and heard that his night was great! A favorite nurse was with him and was going to discharge him that day. We had already taken care of all the "required" tasks that the NICU assigned us before discharge. We handed out gifts, hugged many, many people, took pictures and packed up Ethan.

In the course of a few hours, we drastically changed his life. (Although, I guess the same could be said for us!) Armed with discharge papers, tanks and other equipment, we walked out of TCH for the first time as a family. There were no rules now; he was all ours. It was wonderful.

Once we got home, we just looked at each other and smiled. We were home. All of us, together. And, since that day, one year ago today, we have learned a lot. The days of me sitting in the backseat with Ethan are gone, as are the days of having two people in the car with him. Gone are the days of Ethan not being able to deal with sunlight or wind. When he first came home, he couldn't sit up yet. Now he is so close to walking independently. We have heard his voice, his laugh, his cry for the first time. He is truly a miracle. Craig and I thank God daily for Ethan. We feel so blessed that he came home when he wasn't even supposed to live. Our Lord is a gracious one.

Then:


Our family picture as we are ready to leave.


The "Welcome Home" banner from friends, colleagues and students.


Ready to go home!


This was two days after he got home--he was so little!

And now!


Trying on my sunglasses


Kisses


Helping me empty the dishwasher

Cry

While I was grading papers and listening to some music, Ethan was taking his afternoon nap. All of a sudden I heard a cry. I stopped for a moment and waited. Sure enough, another upset cry. I started walking towards Ethan's room somewhat skeptical that it was him, as his alarm had not gone off. As I approached his room, I realized that it was indeed him. I opened the door and he was so upset. (Normally he wakes up happy.) He isn't allowed to sleep with his PMV on, so he was doing this on his own. And, if you have ever heard how loud the humidifier is in his room, you would know that it is pretty impressive that he was loud enough for me to hear him with his door closed on top of the noise of the humidifier.

I picked him up and he snuggled in. He had a poopy diaper and just seemed like he had a bad dream. I changed his diaper and then he threw up. (He isn't sick, this is just the norm.) I held him again for a bit until his breathing returned to normal. He was able to make all of that noise because he had a plug in his trach--which causes the vocalization to move past the trach and through his vocal chords. Either way, it was still pretty impressive that he was able to get my attention without the alarm going off first. I put him back down and stroked his head for a few minutes...back to sweet dreams.

It is different this time

When I was pregnant with Ethan, I was only sick once. I don't even know that it was really because of the pregnancy or the combination of food I had eaten. I really didn't have many cravings or food aversions. I had no trouble sleeping and I wasn't that tired.

Well, that was then and this is now! I have been feeling better, but I have major food aversions. I have also decided that food commercials should not be viewed when one is pregnant. For some reason, I am having a terrible time sleeping. Part of it is because I usually get up twice a night to go to the bathroom. I think I may just start to use a flashlight because the bathroom light seems to wake me up so much that it takes about a hour or so for me to fall back to sleep. (Plus, whenever I am up, I walk to Ethan's room to make sure his numbers are high.) So, basically, I am tired. I have never had that problem before. It is so interesting how the same thing can be so different!

As I have been thinking about the upcoming months, I am reminded that even though I have a toddler, I have never been pregnant in the third trimester (ok, besides 2 weeks) and I have never had an infant in the house. Ethan came home at seven months. He slept through the night without a problem. It is just so interesting to me to realize that those things will be new to me even though I already have one child. But, I am excited to experience those things! We are looking forward to these new experiences!

Brother

We are very excited to share that Ethan is going to be a big brother! :) Surprised? We had always said that once Ethan had his next surgery, we would try for another baby. Well, Ethan had his surgery a lot faster then we had expected. But, either way, we felt that now was a good time to add to our family.

I have known for quite some time as this pregnancy is very different compared to my pregnancy with Ethan. I am sick and tired and sick. Food doesn't tend to sound that great and sleep has been harder to come by. I can say that things are getting a little better in the food category as I am now 12 weeks. But, overall, this time it is very different. Honestly, I think we both take some comfort in that because maybe baby is perfectly healthy. And while we haven't focused on the fact that there could always be something wrong, it does have its place in the back of our minds.

Some people have been very surprised--almost shocked that we would want another baby after what we have gone through with Ethan. But, Ethan wasn't a fluke. It wasn't a mistake that he has the issues that he does and no, it isn't easy. However, we knew that Ethan's issues weren't genetic, so we trusted God to bless us with another baby. And, should this baby have the same issues as Ethan, we will trust Him just the same. Saying that, we don't want this baby to have any health issues. I yearn for a normal (40 week) pregnancy, along with only a 48 hour hospital stay and a fully healthy baby! I can't wait to meet this baby (but, I am patient enough to keep baby in until full term). :)

Baby is due May 21st and we are looking forward to an exciting spring. If Ethan does get his trach out, we hope it is before the baby comes. There will be some big adjustments, especially if he does get his trach out, because then we bring home a baby and transfer E to a big boy bed. But, Ethan has always done well with big things happening and he has had a lot of them in his little life. We think he will be an amazing big brother and will enjoy having a little sibling in the house.

Ethan's cardiologist oftered to perform a fetal echo himself, instead of having a tech do it. (This is a very kind gesture that we really appreciate!) We will also have a level four ultrasound to check the baby over. All of this is not because we would change anything, but because knowing what is going on is essential. When you stay in the NICU for the length of time we have, one starts to wonder if any baby is ever born healthy! However, we remind ourselves that NICU babies are actually rare and the majority of babies are healthy and loud! ;)

We would appreciate your prayers for this baby. We are so excited!

Walking

Below is a video of Ethan walking with my help. What you can't see is that he tends to walk on his heals and really doesn't bend his knees. He is working on using his entire foot with the typical heel to toe movement. However, he has made many strides and feels confident when he is walking with help. He does not have his AFOs on in this video. He treats his AFOs the same way I treat my ski boots when I am tired from a day of skiing. We both will use them so that they do all the work. Unfortunately, this is not helping him learn to use his legs properly. When I work with him while he is wearing his AFOs, he does much better and his leg movement is corret.

Milk

Ethan has been more and more interested in the different beverages we are drinking. Tonight he seemed like he wanted to try my milk at dinner, so I helped him take a sip. And while most comes back out (because he is still working on how to move liquid/food to the back of his mouth) he still gets the taste. He was very interested and wanted to keep "drinking" some milk.

I put some in his sippy cup and gave it to him. We can't use the type of sippy cup that has suction or that requires sucking because that can backfire big time and cause him to backslide with his eating. (This is common with trach kids.) Instead, I have the type that have a built in valve. This type only requires Ethan to bite down on the tip, allowing liquid to flow through. What really helped was the fact that Ethan was trying to bite down on my cup while he was trying the milk. It is always so encouraging for us when he takes such interest in food/drinks. We consider such a blessing from God!

Voice

It is so nice to have Ethan's voice back. Once he got sick, he couldn't tolerate having his PMV on, so it has been weeks since we have heard his little voice. He seems to have no trouble now and enjoys telling "stories." His voice seems to be a bit louder lately and I am hearing more fluctuation in his pitch.

Like I said before, he is a very busy boy. However, he does love to give hugs and will often stop playing for a quite hug before returning to his activity. He loves the fact that he can open the cabinets and drawers in the kitchen. (As I write he is tearing apart a magazine.) Ethan enjoys books and balls. He really likes to dance and if any type of music starts, he will begin to show his moves.

We did have to go up a little on his oxygen last night, so I don't know what that is about. It wasn't much more and it is probably nothing. Sometimes he just wears himself out from playing so hard that he needs a little extra help at night.

Baseline

Ethan has returned to his baseline oxygen requirement. He is doing well and while he is uncomfortable from the new teeth trying to poke through, he is my happy little man. After a little while, once we see his numbers consistently high, we will try room air trials again.

Ethan is an extremely busy little boy! He is doing well walking while pushing anything or using the furniture. Once in awhile he will let go and stand for a second. Standing/balance is our current new goal.

The weather is beautiful here, so we hope to get out a little this weekend and enjoy it. Soon it will be too cold and too snowy!


Pals

Done with meds

Ethan seems to be doing really well this past few days. His oxygen requirement has gone down significantly and while he isn't at baseline yet, he is pretty close. He has finished his antibiotic and steroid meds. Both seemed to help him immensely. I didn't do anything different with daylight savings time. We just put Ethan to be a hour later and he woke up around his same time. This morning was better as he didn't wake until 7:15 am. (Much better!) Hopefully he is back to his norm and didn't just fool me this morning! :)

The Turkey and The Pumpkin

I don't think Maverick was too thrilled about his costume!






We took Ethan outside in the snow for the first time today. Below is a video of his first sled ride.

Sleep, Snow and Sounds

I like to sleep. No, I love to sleep. I was always a good sleeper. As a kid, even a toddler, I would just put myself to sleep if I got tired. I never worried about missing anything while I was sleeping because I loved to sleep. I am not a night owl and I prefer to be in bed by 10:30pm at the very latest. I am not a morning person either because I like to sleep in. (I always say my best hours are between 10am and 10 pm.) Ethan has, for the most part, followed in my footsteps and has been a great sleeper. In bed most nights by 7 pm and up between 7:30/8:00am. Not to mention his nap during the day.

Why then has he decided to wake every morning at 6 am? I don't like 6am...it's early. And, he doesn't get to get out of bed at 6 am either. Here's the thing--most kids who wake up would babble or talk in bed (if they can't climb out) but Ethan sets his alarm off as soon as he stands up because it can't pick up a reading. It pretty much goes off every 7 minutes after that. 7 minutes is enough time for me to get up, silence the alarm, put him back down, go back to bed and start to fall asleep right in time for it to go off again. And, we can't turn it off--neither of us is awake. You can't just turn off life saving equipment when neither adult is awake. Some would say he must not need as much sleep, but that isn't the case. It doesn't matter when he goes to bed--either 7 pm or 9 pm, he has been waking at the same time the last few mornings. (This all ahead of the time change!)

At first I thought he was probably hungry. Most 18-month-olds eat real food and thus their body has to break down that food, keeping them full longer. But because Ethan is on a liquid diet, the body can metabolize it quicker. (He still gets one large feeding with the pump at night.) I thickened it last night with some cereal, hoping that it would keep away the hunger, if that is indeed the problem. Guess what time he was awake this morning?! Yep-6 am. The other thing that wakes him up is a poopy diaper. Before our weekend getaway to TCH a few weeks ago, Ethan's had a pretty set dirty diaper schedule. It was always after his breakfast, which was perfect. Since we have returned, it wakes him up first thing in the morning. However, that used to be at 7 am. Now he wakes at 6 am, without a dirty diaper, and very tired (still giving all the signs that he is very tired) and then will remain up until he has a dirty diaper. At this point he is very awake, so even if I change it right away, he won't go back to sleep.

Here's the thing, he needs the sleep. He wakes up tired. His is exhausted by 5 pm most days, even after a good nap. We will be working on this and hopefully will get him back to what he used to do.

If you don't live in Colorado, you may not have heard about all of our snow the past 48 hours. We measured 16 inches in the backyard yesterday morning. Ethan loved to watch it snow. He would just stand at the patio door and watch the backyard fill up with snow. He also loved watching Maverick play in it. It is too cold for Ethan to go outside, but maybe if it warms up tomorrow, he can experience snow. (Since Ethan doesn't use his upper airway, there is nothing to warm the air going into his lungs, so it is rough on his lungs and not good for him to be out in cold weather.)

Craig and I were also up in the middle of the night last night. Ok, I woke up Craig because I heard a loud crash. It woke me from my sweet dreamy state and scared me. I had Craig check the house, then I checked the house and then we both went to check the garage. (Yes, that was on my insistence.) I don't know if it was snow falling off the roof or what it was, but it was loud!! We didn't find anything, so that was good.


Maverick loves to help Craig shovel--here he is in his jacket.


Watching the snow


Maverick playing and getting lost in the snow.

No break

Poor Ethan can't catch a break. And, this is nothing big, but now he has another tooth coming in and it seems to be bothering him much more compared to his previous seven. Since he has an oral aversion, the typical tricks for teething babies don't work for Ethan. He won't put a frozen/cold washcloth in his mouth or gnaw on frozen fruit. He gags if you put the mouth gel on his gums.

As I was cooking dinner tonight I looked over at Ethan and saw that a vital part of his equipment was broken. Ugh. It was 6 pm. I didn't have a replacement part and that meant that I would have to disturb the on-call person at our oxygen company. I was so frustrated because I haven't had to use the on-call (because I normally try to have a spare for every part) and with the weather being so nasty, I felt badly for anyone who would have to come out. But, we couldn't get through the night without the tiny part. I called and of course, our delivery man was more than willing to come out. It worked out because I had to go and pick up a prescription not far from where he lived. He met me at Target and handed over the vital part. I felt a little better knowing that he didn't have to drive all the way down to our home. Everything is now fixed and we are prepared for the winter storm!

Much improvement!

Ethan had a great weekend! As of yesterday his secretions are finally back to their normal color (cloudy white) and he seems to be working less to breathe. He has his full amount of energy back!! Since he is responding so well to the meds, we only have to do a three day steroid burst, instead of a five day. He also seems to be doing well with less humidity. Thank you all for your prayers! They truly mean so much to us!

Tracheities

All week I have been concerned about Ethan. The blood in his trachea seemed wrong. While he has had blood before, this amount seemed to be way to much just for a little agitation. Our pulmonary doctor was able to get us in for an appointment this afternoon. Our doctor decided to do a quick laryngoscopy (small camera sent down Ethan's trach) to see if there was a granuloma causing all the bleeding. Ethan sat on my lap during the very quick procedure and did great. While there wasn't a granuloma, the laryngoscopy showed that his trachea is raw, inflamed and bloody. Poor guy! They did give him a little lidocaine and that helped him feel better for about 45 minutes. He was diagnosed with tracheities or an infection of the lining of the trachea. We were given antibiotics and steroids to help him get over this.

The best news of all is that we looked quickly at his bronchi and they look GREAT!! We couldn't believe how amazing they looked. And, while they are far from perfect, our pulmonary doctor said he was very encouraged by the quick pictures. In December, when we have the regular bronch, we will be able to get a better picture. But, it was so exciting to see how great they looked!!

Slowly healing

Ethan seems to be making progress, although his breathing is still rough. He is still retracting a good deal and his secretions are still so bloody. Most likely we will start him on a short oral steroid burst to help calm the inflammation. I am keeping him humidified, but it isn't easy considering how mobile he has become. The great news is that he hasn't had a fever for 36 hours! I just don't like seeing him work so hard to breathe. Ethan is in good spirits though--as seen from pictures below.

It looks like he has the beginnings of a granuloma at the entrance of his g-button. That is why he is in his pjs so much. I am detaching the tube when he isn't being fed to help (then it doesn't get pulled on). If he is wearing day clothes, it is hard to get access to the button every time he needs to eat. Enjoy the pictures and video!



Ethan really LOVES this game! This is the day he started a fever...still had some energy.


This is Ethan at the E.R. Energy was gone. I was trying to entertain him with my sunglasses.


Sleeping at the hospital.


Feeling better after a nap at home.


He was trying out some ranch dressing. He did pretty good.


Since I have to keep him contained (for humidity), I had him in his walker.


Again, we play this game a lot!




He got stuck trying to get through my strategically placed chairs.


This was on Saturday in the hospital. He likes to dance to music on my iTouch.


Ethan loves to give Maverick treats. This was before Ethan got sick.

Humidity

Ethan had a rough night last night. His breathing and cough from about 4 pm on was terrible. He was wheezy and tight. We tried taking him in the bathroom and running a hot shower, but it only worked for a few minutes. I have given him an extra dose of one of his inhalers to help him breathe better. Since he is normally so active, we don't humidify him during is waking hours. However, I am trying to keep him on humidity all day today.

To do that, I need to keep him about 4 feet from the humidifier. Right now he is in his walker because he can't get very far and I can keep him contained. I am sure he thinks this is an awfully boring day so far! But, I hope it will help him to loosen up a bit.

Our little friend Annika is doing really well. She only has her i.v. for antibiotics and is up and moving around the room. She needs to have more of an appetite, but is off of oxygen completely!!

I am due for some pictures and will try to get them up later today!

Bleach

My house smells like bleach. I just bleached many of Ethan's toys. The only "problem" with toys these days is that so many have mechanical parts that I can't soak them. Those toys will have to wait for the wipe down tonight. I will probably wait to give E these toys back until we are officially in the clear. As for now, he is thoroughly enjoying the plastic cup I gave him to play with. I may go to the basement soon and get him a cardboard box. After all, isn't that what kids really want to play with?!

Ethan had a better night last night. I was up with him from 4:30-6:45 am, but otherwise he did ok. He hasn't had a fever this morning, so hopefully that means he is on the mend. He keeps coughing and moving the junk out of his lungs, so that is a good sign. It is still mostly bloody though. The only thing we can do to help with that is to lavage him (squeeze small amounts of sterile saline down his trach) but, considering that he is raw down there, I don't think that feels too good.

His oxygen is still triple his baseline, but I was able to come down yesterday. Sunday night he was quadruple his baseline. We are headed in the right direction! He took a three hour nap yesterday and because I was so tired from the weekend, I did too. :)

Ethan's bronch will now be scheduled for the first week in December. And, for the first time, I don't care that it has been moved back. I guess that I am slowly learning that God's timing is the only one that matters.

One thing I am trying to do is to figure out how to disinfect wood flooring. We have a lot of it and if Ethan wasn't still crawling, I wouldn't worry about it. But, he spends the majority of his time playing on it, so I would like to get it nice and clean. And, I don't want to do it often, just after major illness or once a month or so. I can't find a way to do it that won't hurt the wood, so if you have any suggestions, feel free to pass them along. The only one that I have heard works and won't damage the floor is the dry steam, but I don't have one of those machines.

Oxygen

He is still sleeping this morning. His saturation levels are better, but his oxygen is extremely high (we have never had him this high). Last night we were struggling to keep him 90 or above, but when I got up with him at 4:30 am, he was up to 98. It is a bit of a mystery because when I listened to him last night, he sounded clear as a bell and yet, was still having trouble. Then, when I got up with him, he sounded terrible and was coughing this deep, intense cough. We are still getting some blood when we suction him.

Last night Ethan was so tired (which may be playing a part in the saturation levels) that he sat up, eyes closed, but with tears running down his cheeks while I suctioned him. At 4:30 am, I did get a smile, but you could tell that while he was very tired, he wanted to stand up because it was easier to breathe.

I have had some questions about Tamiflu. Tamiflu is an antiviral drug. Because the flu is viral, it can't cure the flu. However, what it does do (as I was told in the hospital) is contain the flu. So, instead of allowing the flu to spread to different cells and thus, throughout the entire body, it contains the flu and isolates it. It order for it to work, one must start taking it with 24-48 hours of the first symptoms of the flu. Tamiflu lessen the intensity and duration of the flu because of the fact that it keeps it from spreading over the entire body.

Home sweet home

We left the hospital late this afternoon. It is so nice to be home. Ethan is exhausted and after a bath, was asleep before I finished giving him his Motrin and Tamiful, despite the fact that his light was shining in his face. It is such a great feeling to be in your own bed--I can't wait to go to sleep.

I was surprised that Ethan needed more oxygen than usual. This because we tested him at the hospital on his own settings and he was fine. Since I put him to bed, he has needed much more. But, we can manage it.

Thank you again for all of your prayers! I hope that in the next couple of days he can be feeling completely back to normal!

Discharge

It looks like we are going to be discharged today! It can take up to a few hours, so we aren't on our way yet. But, it is nice to know that we are going to be able to go home and let Ethan finish healing there.

E still has a fever, but I think that it is going to take a few days until the fever is completely gone. And, the cough will linger as well. As long as we can stay away from a secondary infection, he should be ok. I don't know, however, if we will be doing a bronch in the near future. Since he has been sick I have a feeling that we will have to wait 6-8 weeks to have a bronch. I will have to double check about that though.

Our little friend Annika is improving as well. She has been moved out of the PICU, so that is very exciting! He chest tube is gone as well as her arterial line. Yay!

Nice surprise!

Ethan had a much better night last night. While he went to bed late, he slept all night and didn't seem to have any problems. His cough is still intense and his secretions are thicker than normal, but the nice thing about trachs is that you can get it all out!

We don't know the plan today but I was so excited when a friend (and past NICU nurse) came to our door this morning. I thought she was coming for a visit but instead, she was floated up here! Yay! We had a wonderful nurse yesterday, but the ability to have her is so perfect! It was such a nice surprise. :)

Craig and I slept better as well. Once I know more, I will update.

Feeling better

While Ethan hasn't been fever free yet, it has been much lower compared to last night. He is doing well and standing up in his crib. He almost smiled for a few nurses, but the mask makes him leery. I don't know what the plan is for tomorrow, so we will have to wait until rounds. I was told that most of the kids they are seeing with presumed swine flu are doing just fine. Seems that many of the media outlets are a tad dramatic. That isn't to say that there aren't kids that are having a hard time with this and it is hitting a population that it normally doesn't hit as hard. However, I was told that the kids they are seeing here come in for a day or two and are monitored and they go home, barring they don't get a secondary infection. And, because this is widely known about now, many are put on Tamiflu right away. Of course, you don't want your kids to get this because you don't know how they are going to respond to it.

Ethan's cough still bothers him and he is quite dry even with humidity all day. But, he is slowly getting better. We had visits from two friends during their breaks and I also ran into past nurses in the cafeteria. Ethan has made many nursing friends on this floor and has been given stuffed animals by a couple. If only he would smile to say thanks. Right now he just frowns and starts to cry. Poor guy.

Thank you again for all the prayers!! Like always, they provide such a peace. We are praying that Ethan has a quiet and rest filled night. (Us too!) And that his symptoms do not worsen, but continue to improve.

X-Ray

Ethan's x-ray looks fine. No "fluffy" stuff. :) Since he had an x-ray about two weeks ago, it was nice to be to have something to compare it to. He is feeling quite bad, but, he is acting better compared to last night. His stranger danger has increased and since he has the flu, everyone must mask and gown up when they come in the room...that doesn't help.

A funny story from yesterday...
Ethan was sitting on my lap and his diaper had been loosened from a rectal temp. Apparently it was very loose because all of a sudden I felt my jeans get really warm. Yep, you guessed it, he peed all over me. And, since it was in my lap, it looked like I had wet my pants!

Our friends Ingrid and David and their daughter Annika are still here. However, Annika has made great strides! She is extubated, off of some meds, and had her chest tube removed today! Praise God! She is doing really well!!

Rest?

Ethan had a fairly good night last night. It took a little bit to get the orders written for Motrin and Tylenol, but once he got the Motrin, he did a lot better. The tylenol wasn't touching his >103 fever, but the Motrin took care of it. He finally got his inhaler, so that helped his breathing. His pulse finally came down once he slept, as his respiratory rate declined as well. It is assumed that he does have the swine flu, as the seasonal flu has not been seen yet. I don't know if he is going to be tested for swine, per se, but he did have his seasonal flu shot a few weeks ago.

This morning he is doing much better. His numbers look great compared to the past 48 hours. (And, yes, he looks better too.) He is still feeling yucky and is super clingy, but the look in his eyes is back a bit and on smile snuck out this morning. He was able to get his second dose of Tamiflu and that is SO key right now. It is early, but the fact that we caught it so early means he may be able to get over this quickly.

We "slept". I think napped is the more appropriate word. But, as always, we have great doctors and nurses. And, we already had a visit from a close friend who works downstairs. We are waiting to see who Ethan's chest x-ray looks. We are praying that it looks good and that there are no signs of pneumonia. Rounds should be coming soon, so if there is anything new, I will update. Thanks so much for the prayers!

Back to the CPCU

We arrived at TCH at 11:30 pm. Poor Ethan. He is tired and feels horrible. And, oddly enough, we have the exact same room we had last time we were here. I was happy that he didn't have to go to an ICU. The plan is to watch him for 24-48 hours and if he doesn't get any worse, we will be able to go home. Right now he is finally sleeping. We just got done talking to the doctor. So far it seems that we caught it early enough and the fact that he got a dose of tamiflu earlier today is a step the in right direction. His poor little lungs are tight and wheezy. His fever spiked in the ER to 103.5. But, with some Tylenol and Motrin, he should be able to rest comfortably tonight.

I started to cry a bit when we heard that Ethan would need to be admitted. Every other "visit" has been planned and the unplanned visits are always harder. We were able to stop at home very quickly and he got our things packed.

Please pray for Ethan. Pray that he will heal quickly and that he will not worsen. Please also pray for Craig and myself. Clearly we are both at risk for contracting the flu. I will update more tomorrow.

FLU!

We are at the ER with Ethan. Our doc had asked us to get a flu test done at an urgent care so that we could know if Ethan should remain on the tamiflu. Well, both of the urgent cares that I called refuse to see trach babies. So, we ended up at the ER. Ethan is positive for the flu and because they are not seeing the seasonal flu right now, it is assumed that he has the swine flu.

We have been here for a few hours and Ethan looks beat. I feel so badly for him. HIs little face is so pathetic and his cheeks are bright red. His breathing is labored as well. We are waiting for the ER doc to call our doc at TCH to see if Ethan should go on antibiotics because there was some "fluffy" stuff in his left lung. (I have NO clue what fluffy means...I am more used to doctors using appropriate terns for things with Ethan and not generic terms.)

I will update more later. If he has to be admitted, he will be take down to TCH. I don't think that is going to happen, but we are just ready.

Strike that, our doc at TCH wants Ethan admitted. We are waiting to hear if we can drive him or if he has to take an ambulance.

Sick baby

Ethan is sick. Poor guy. His fever wasn't terrible this morning (100.7), and he was playing a little bit, but not compared to what he normally does. It didn't take long for his work of breathing to change and his O2 requirement to go up a bit. His heart rate is elevated from the fever and he can't sleep. After an email correspondence, it was decided to start him on Tamiflu, as his fever is climbing and is now at 101.5. He is wheezy as well. I was hoping he would fall asleep after he got his Tylenol, but no such luck yet. It may be time to spend some quality snuggle time in the rocking chair....

ECHO

Ethan had a follow up ECHO today. I knew he wasn't going to do well with it, so I requested some nasal versed at the very beginning of the appointment. He cried through getting weighed and having his vitals checked, so I knew there would be no way he would stay still for his ECHO. Nasal versed is very fast acting and it was pretty clear that he was feeling good once he had it!

The best part was that our doctor is thrilled with how the ECHO looks! Thrilled! He said that the valve is functioning amazingly well and that the pulmonary arteries look great! We are so excited. He said that he could not have imagined a better outcome from the surgery. And, now we get to wait 6 months until we see him again. (We are now 2 for 3 in being able to not go down during the winter season!!)

I can't tell if Ethan is getting sick, but both Craig and I are a little worried that he might be. We have turned up his oxygen and he is quite junky. So far his temp is normal, so I hope it is just that he is very worn out from today and is sleeping so hard he isn't breathing deeply enough.

We all want to see what Ethan's bronchi look like. I have been trying for weeks (literally) to schedule a bronch, but for some reason, I am hitting many roadblocks. Our cardiologist is also very interested to see the results of the bronch. It will happen soon, I am sure. We feel so blessed by what God has provided us! His guiding hands during the surgery and His healing hands post surgery have touched Ethan greatly.

Since we were down at TCH I stopped by to see our friend who is in the PICU with her daughter. So far, her daughter is still intubated, but there are hopes for extubation tomorrow. She is on blood pressure meds, sedation, antibiotics, etc. Her parents are devoted believers who are trusting the Lord fully during this difficult time.

Wow

Tonight, I was shocked. Ethan and I were dining at home on a scrumptious meal. I offered him some of the sauce from the potatoes. He was interested and wanted more. And then some more and then some more. About 20 bites later, he was finished. My meal got cold as I didn't want to break great pattern he had going. He had half on his shirt because he is still getting used to moving food in his mouth.

I would pause when I thought he needed a break and try to take a bite myself. Once Ethan saw that he would bang on his tray and babble at me to get my attention. I would then give him another bite. The consistency was that of pasta sauce and his bites were almost a full baby spoon. He only gagged twice, but neither time resulted in vomit. I didn't know what to do. I wanted to film it and/or take a pictures, but my camera was out of battery (figures). It was so exciting. He seemed to understand what he was doing too. I really, really hope this was not a one time deal!!!!

Tubing

In the pictures from Sunday, you may have noticed that we have somewhat changed up the tubing situation during the day. When Ethan was moved from the CICU to the CPCU, the respiratory therapist made a trach mask that could be directly hooked up to oxygen. It was used for transporting Ethan, but we took it home. Ethan only receives humidity while he is sleeping and we have been doing that for some time. There would be no way to keep him hooked to the humidity while he is awake because it is only a 4 ft tube. If you are curious to what it looks like, scroll down to my entry from Sunday. (You can see it best in the picture entitled "Reading.")

We had to wait until Ethan was close to his baseline to use the new set up and it is much easier. There is a little bit of light blue tubing attached to the oxygen tubing. Overall, it makes life a lot easier!

Ethan's little tushy seems to be healing. His diarrhea seems to have slightly improved. Otherwise he is his same happy self. :)

As for an update on our friend's daughter...she is stable. Last I heard she had a procedure to try to clear the fluid from around her lungs. She had been extubated, but was reintubated after the procedure. Her hospital stay most likely will be a few weeks. Please continue to pray for her. Thanks!

New tricks

Before I write about Ethan, I ask you to pray for friends of ours and their daughter. I hadn't asked for permission to publish her name (so I won't until I have that), but her little girl (6 years old) was airlifted down to TCH with serious pneumonia. She is in the PICU. I was able to talk to her mom and give her some insights into life at TCH. Please pray for the entire family, but mainly for God's healing hand on her daughter's lungs. It is very serious as her daughter is intubated with a chest tube. Many of us are lifting her up in prayer tomorrow morning at 9am, so if you have the opportunity, I would greatly appreciate it if you would. Thank you!

Ethan has been doing ok the past few days. He has had some bad diarrhea for the past two days and has slept a lot. His poor tushy is red and bleeding from diaper rash. He rarely ever has diaper rash and I am glad that he is handling it much better compared to when he was in the hospital. At that time he would clamp down and have to be bagged out of it.

Friday night to Saturday he slept 15 hours. His normal is 13 hours at night and two in the middle of the day. He doesn't have any other symptoms, so hopefully he just needs to work something out of his system. We are still on lasix once a day. And, while his oxygen has gone up a little bit, his work of breathing has not, so we did not go back up on the dosing.

Ethan has made some big steps with his eating lately. On two separate occasions, Ethan has taken 4-5 half baby spoonfuls of food. Once it was pasta sauce (he really likes anything tomato based) and the other was with my potato soup. It isn't much, BUT it is so much more compared to what he has been willing to do. He also was very interested in my pizza the other night and tried to take a bite. His signs for eating have improved as well--he will lean forward and open his mouth now, when he is interested. And, he now licks his lips to get a taste of whatever I am giving him. It is a VERY slow process, but it is encouraging to see such improvement. I can't imagine what it will be like the day he eats a full meal or even a cup of applesauce--be prepared in advance for a very excited mom!

While he still doesn't like his AFOs, he is up and moving more. He is doing better at transferring from one object to another. Ethan's new thing is to crawl or go anywhere with something in his hands. Below are some pictures!


Ethan has figured out how to give Maverick treats.




Reading





Sweetly sleeping