Differences

I know I have mentioned this a lot, but I can't get over the differences between a healthy baby and one who is not. For example:

Lungs...Carter's work well. Trust me, they function just fine! ;)

Spitting up...I don't have to quickly flip Carter over onto his tummy if he spits up because I am not worried about him aspirating.

Size...I put on a 0-3 outfit and it is basically too small. He has grown so fast and I think I might not even get him into some of his clothes before he moves up to size 3-6 months. Ethan spent months in the same size, especially in the beginning. I never was sad that he grew out of a size because we worked so hard to get him to grow.

Development...Carter has met every "milestone" all the books claim he should have met by now.

These are just a very few of many of the differences I have experienced. I am sure there are many more to come!

One month

Carter turned one-month-old yesterday. As I have stated before, I feel like the days go slowly, but the weeks fly by quickly. He is such a sweet baby. His schedule is getting better and he no longer cluster feeds in the morning. Carter's appetite does seem insatiable at times, but I am sure that is a good thing. :)

He enjoys being on his tummy, especially if he is taking a little snooze. (Don't panic, I only let him do it when I am watching him.) I introduced him to a bottle last week and he does great with it. He normally has one bottle a day and has no problem going back to nursing. At night he goes to bed at 8 pm and has his first feeding around 12:30 am, is up again at 4 am (ish) and then around 7:30 am (again, ish). Some nights the schedule fluctuates a bit. A few nights ago he was up more often and I realized why the next morning, so that was helpful to see a pattern.

He likes his pacifier and enjoys looking around. He has rolled over twice and, luckily, wasn't too close to the edge of the couch either time.


I love how peaceful babies look when they sleep





Some big brother time


I like the curious crinkle in his forehead when he looks around

Splish Splash

The weather is hot and perfect for a little swimming. We are really looking forward to getting Ethan's stoma closed so we can take him to a big pool. In the meantime, I got him a kiddie pool with a little slide and today he played in it for the first time. He LOVED it! I told Craig that we must get this stoma closed because we clearly have a little fish on our hands! While we need to be careful with his stoma, he still was able to have a blast. Both boys had so much fun and both cried when it was time to come inside.






He also really had fun with the hose




My way of keeping Carter out of the sun, but outside in the yard

Baseline

Ethan is back to his baseline oxygen requirement at night. He went back down Friday night and has done great. So great, in fact, that we turned him down to the lowest possible setting on the oxygen tank--1/64 of a liter flow. Some may wonder whether it makes a difference or not, but we have seen it make the difference between 90/91% or 95% saturation, depending on whether we give him the small amount of oxygen or leave him off. It will probably take about a week to determine if he can handle such a small amount (not that 1/32 is that much either) but if he continues to do well, maybe we can wean him all together by the end of the month. The past few nights he has been taking off his nasal cannula too. As I have mentioned before, we have often been told that children will take off/remove medical assistance items once they feel their body no longer needs it. We will soon see.

We had a wonderful Father's Day. It was low key, but we have had a lot going on lately, so low key is very welcomed! Craig is an amazing father and I love seeing him with the boys. I think it is so neat that he has two boys, close in age, to love and train in a Godly manner. Thanks, honey, for being such a wonderful father and example to our boys!


Kisses for his little brother


One of Ethan's favorite things to do is to push anything that has wheels




Helping Carter with his pacifier




I think it is so funny how, at this age, the pacifier is half the size of his head!


My happy little guy

Simple

There are so many things that I notice when I look at Carter. I relish how easy life (in general) is with him. He has muscle tone and can lift his head briefly...that took months for Ethan to achieve. Every night when I give Carter a bath I watch his chest rise and fall with no effort at all. (I realize he doesn't need a bath every night, but it helps him sleep well and so far his skin is not having any trouble with it--plus it is the same routine we do with Ethan.) When he cries out of hunger he doesn't have to be bagged out of it. He is pink.

I remember bathing Ethan in the same tube in the hospital and how we did so while he was hooked to a ventilator. And, for us, that was our "normal." Taking leads off every evening and replacing them after a bath was our routine. Changing his trach dressing (which often led to its own bagging situation) was also part of the routine. At times I find myself dressing Carter from the feet up because that is how I had to do it with Ethan while he was on the ventilator. I normally stop myself and smile at how I can do things differently now. And for that and many other things, we are truly thankful.

Feeding Specialist

At Ethan's last cardiology appointment, his cardiologist recommended a well known feeding specialist. I have long been concerned that those who have come into our home for therapies didn't have the experience with trach/post-trach kids when it came to eating. And, it wasn't a fault of theirs, it is just that they don't tend to see a lot of kids who are or have been, trached.

This morning I had an intake appointment, over the phone, with the feeding specialist. I was simply amazed! I only told her a small amount of information in regards to Ethan and she was able to pin point his tendencies without ever having met him! I was more then impressed. She has over 20 years of experience working with feeding issues. While I was hoping to have Ethan see her directly, she speaks all over the world and is leaving for Australia soon and won't be back until August. However, she did tell me that she has trained a feeding group up in Fort Collins and we could go there. It is much closer compared to going all the way down to Denver and we may be able to get an initial appointment very soon.

Basically what she told me over the phone is opposite of what so many have told me in regards to Ethan eating. It may sound odd, but she had me try a few things with a cracker and I was shocked at the "experiment." I was able to see just how difficult it is for Ethan to swallow since he isn't placing food correctly in his mouth or using his tongue effectively. Not to mention she said that foods most kids need to start with (despite age) are not appropriate for a child such as Ethan, who has had a trach. Basically purees and foods that "dissolve" (i.e. Gerber puffs, etc.) are going to be the last items that Ethan will ever master, so starting with them is going to make eating more difficult for him. "Adult" food is more appropriate and he likes it more anyway.

To begin with, we need to offer Ethan the following: a whole carrot, whole celery stalk or whole dill pickle--essentially items that can get to the back of his mouth and teach him to move those items over to the sides of his mouth, where he would use his molars. However, these items are not little pieces because the goal is not for him to bite a piece off. Not only will this help with oral placement, it should also help with moving his gag reflux from the front 1/3 of his mouth to a more appropriate placement.

I am excited. It just sounded so promising for the first time in a long time! This won't be overnight though--a rough estimate is that it will take about 2 year for Ethan to be g-tube free. But, that is ok because my goal for him was to go to kindergarten without a g-tube. It was so encouraging!

Carter Joseph

Carter is a sweet baby. He normally cries only when he is hungry and boy, he lets me know he is starving! When he smiles he has two dimples above both sides of his mouth. He likes to cluster feed from 4:30 am until 7:30 am...this, we are working on though as those hours are prime sleeping hours. Carter has already gained over a pound since birth and weighs 9 lbs 7 oz. I didn't realize how easy it is for healthy babies to gain weight. I am amazed that he fits in 0-3 month clothing, including many items Ethan never got to wear. I moved him into size 1 diapers today and they fit just fine.

I am trying to keep him awake more during the day to help with the early morning sleeping. Being outside helps a lot, but we don't have any shade in our backyard, so that makes having Carter out there a little difficult. But, both boys enjoy our walks.

I am impressed with how strong Carter is already. Maybe all healthy babies are this strong, but I am not used to that. It is so wonderful to watch!


First bath


Ethan being silly


I was trying to get them sitting next to each other, but that didn't work too well


Ethan giving a tackle hug to Carter




Getting strong already!!




Ethan really likes to hug Carter




Carter loves his baths!

Much better

I apologize now that this is pretty short! But, I wanted to let everyone know that Ethan is doing much better and is close to being back to his baseline oxygen requirement at night! We are so relieved that he is feeling better and getting over his pneumonia. It is nice not to be super concerned with Ethan being close to Carter as Ethan loves him so much.

I have a lot to share in the Carter department, but need to get some other things accomplished tonight. I will post tomorrow with some pictures of the boys. :)

Turning the corner

I think that Ethan is finally turning the corner! The antibiotics seem to be working and he is sleeping comfortably again. We were able to go down a little on his oxygen as well. I don't hear him coughing at night and trust me, I am awake to notice! ;)

It is wonderful to know he is feeling a little better and able to sleep again at night. It has been a long 13 days of this illness and it is great to know he is feeling better!

ECHO

Ethan had an ECHO today. He laid perfectly still for the entire ECHO! (A video helped, and the good news is that he didn't need any sedation.) The even better news is that his heart looks fantastic! The pulmonary valve is functioning wonderfully with minimal insufficiency. They weren't able to see his pulmonary arteries, which is actually a good thing because it means they haven't become huge again. His cardiologist is extremely pleased with the images on the ECHO. It was such wonderful news! We will have an MRI done in August, about a year after Ethan's last surgery. It will give a clear picture of his pulmonary arteries and if all looks good, his cardiology appointments will move to yearly check-ups!

Ethan has only had two doses of his antiobiotics, so I haven't seen much improvement yet, but hopefully he will sleep well tonight and start the healing process!

Here are a couple pictures of Carter:

Chest x-ray

Today I took Ethan down to TCH to see his pulmonary doctor. We both have been feeling that Ethan should be feeling better by this point, and since he isn't, felt that there has to be something else going on. Sure enough, a chest x-ray confirmed that Ethan has pneumonia. His doctor said that it probably started out as an innocent virus that hung around and changed into pneumonia. I was so happy he didn't have to be admitted and we can fight this from home. The doctor wants to see marked improvement by Friday, or he will put Ethan on a stronger antibiotic.

Ethan's doctor was happy that Ethan could cough hard enough to clear the secretions, while not falling into respiratory distress. He has stayed above 90% during the day, so as of right now, he does not have to go on oxygen. At night we have him at 1.5 liters--a far increase from what he normally is at. However, hopefully with the antibiotic, he will heal quickly!

I have some pictures of Carter that I want to put up and will do so tomorrow.

5-8 minutes

That was my night last night. Every 5-8 minutes (and I seriously mean EVERY 5-8 minutes all night) Ethan's alarm rang because he couldn't keep his oxygen above 90%. And, we have him turned up above 1 liter at this point. I ended up sleeping on the floor in his room because I needed to reposition him or try to figure out how to get him to keep his saturation levels high enough throughout the night. Couple that with the coughing and it made for another rough night. I don't know if he can't keep his levels high enough because his nose is now stuffy and he is breathing through his mouth, hence making the nasal cannula ineffective, or if his body just needs more.

At one point there was a 20 minute time frame that I was able to sleep, but there was another little man that woke up at that point wanting to eat. And, of all things, Carter had a great night last night, waking only at 1 am, 5 am and 8 am--what a good boy!

Ethan is also borderline needing oxygen during the day again as well. We are hoping he can continue to hold himself in the low 90s so that we don't have to hook him up while he is awake, but he is riding a very fine line right now. It just goes to show how a little virus can make a big difference in Ethan's little body.

What a weekend

I had an entire entry completed on Saturday, only to have it erase as soon as I clicked on the "publish post" button. At that point, I was way too tired to do it again, so I just went to bed. However, a recap is probably in order....

Starting on Friday night Craig and I were up to midnight debating whether or not we should take Ethan down to the TCH ER. His oxygen requirement shot up and he was so miserable. I was emailing his doctor well into the night to make the decision on whether or not to bring Ethan down. The problem was this: if we took him down, we knew he would be admitted into the hospital. And, if we did that, would they really do anything differently compared to what we could do at home? If he got into trouble, of course, they could take care of him.

After a long debate, we kept him home Friday night and cranked his oxygen. By Saturday, he wasn't any better. His oxygen requirement kept going up and he seemed to be having such a hard time breathing. A small fever had returned and we were concerned that something else was going on. After all, it was day 6 of this virus and we felt that he should be turning the corner by that point. We debated throughout the day and had the bags packed to bring him down. In order to help us make a decision, I called our home nurse to see if she could come over and evaluate Ethan.

The good news was that she said his lower lobes (where RSV and pneumonia reside) are fine. Knowing this information, we decided to keep Ethan at home and try as many things as possible: a cool mist humidifier, vicks, an albuterol inhaler (which we have never had to use before), increased breathing treatments, increased oxygen, etc. He got through the night again, but it was a long night. While he was on 1/32 of a liter flow, he is above 1 liter at this point and that only keeps him around 91%--93% if we are lucky.

Because of Ethan's health, it takes him at least double the time as healthy kids to recover from a virus. It makes it hard on all of us, but especially him. Even tonight, he is still up on his oxygen and we also given him an oral steroid that his doctor prescribed to hopefully help his airways from all of the inflammation. I wish I can say that he seems to have turned a corner, but that hasn't been the case quite yet. However, he hasn't gotten worse, so maybe he is getting close to turning the corner. If you could lift him up in prayer, we would really appreciate it. It is hard to watch him struggle to breathe.

On of the things that we were celebrating in the midst of all of this was Ethan's heart birthday on Saturday, June 5th. Two years prior, Ethan had his first open heart surgery. We will never forget the day. We are reminded of God's unfailing love and awesome power every time we think of that day. He gave us so much and we are immensely thankful.

Infections

After I wrote the last entry, I thought that maybe I should actually take my temperature. I knew I had a fever because I had been having the chills, etc., but hadn't taken it. When I did, it was 102. Therefore, my doctor has put me on a round of antibiotics with suspicion of an uterine infection or mastitis or potentially, both, due to other symptoms I have been having the last day or so.

Craig has been so helpful and amazing and I could not ask for a better husband!

Doctor Appointments

Both boys had appointments down at TCH yesterday. Carter had his one week check-up and looks fantastic. He is already past his birth weight. It was a little strange (yet very exciting) to discuss "typical" baby topics with our pediatrician.

Ethan has a granuloma at his g-button site, so that had to be looked at his he is still struggling with this virus. His fever has been gone, so that is great, but he is pretty miserable still with all the congestion, coughing, etc. He has been vomiting a lot because he is so congested, but his cough is productive and his lungs sound fine.

It has been hard keeping Ethan from Carter because we don't want to tell him "no," but we don't want him sneezing, coughing or touching Carter right now. I hope this virus improves quickly. Please pray for healing for him.

I haven't been as lucky, as I seem to have gotten what Ethan has...slight fever, congestion, headache, etc. But, at least I am producing antibodies that Carter is getting so maybe that will be enough to keep him well.

Pictures and fever

I just decided to do a new post for the pictures instead of adding to the one from earlier. Ethan has a fever as well and feels terrible. Poor thing. He slept until 10 am and is back down for a nap. Now the task of keeping Ethan and Carter from each other begins. I think our man-to-man defense will help though! So far his pediatrician says to treat like a cold unless the fever spikes or his work of breathing increases. So far his pulse ox is ok as long as he isn't sleeping. He needs a little extra when he is lying down.

Lots of pictures below! :)



I have tried to rotate this many, many times and can't get it. But I thought it was so cute. Ethan had to check on Carter because Carter was crying. Very sweet.


Ethan was a big helper when Craig was installing the curtains.






The finished product!


Ethan's gift from Carter...he loved it!




Our first outing...to Target.


Milky grin




Brothers


A little kiss


Sweetness






Love it!

Boys

We had a wonderful Memorial Day yesterday. A close friend from Denver came up and brought everything needed to grill. We enjoyed introducing her to Carter and Ethan loved having the company, as did we! It was very relaxed and much needed.

Things have been going well overall. Carter is a great sleeper (better day then night) and is working at eating--I guess we are both working on that. But, it is getting better. Ethan seems to be enjoying Carter and has more and more interest everyday. He is especially loving all the attention he is getting from Craig right now. Our man-to-man defense is working with Craig mainly caring for Ethan and me caring for Carter. Craig also has been doing all the housework, so that means he is pretty much amazing.

We do think Ethan is getting sick though, so we are watching that carefully. I saw early symptoms on Sunday and yesterday they increased. A cough is waking him up at night, he is vomiting more from being junky and there has been some discharge from his trach site. (At this point, the stoma is not going to close on its own, so he will have to have it stitched shut.) I can hear him breathing for the first time since he was decannulated and that concerns me. He is still sleeping this morning--a rarity since he coughed himself awake at 7 am, then vomited and then laid himself back down for more rest. (In fact, all three boys are sleeping! I am awake because I am so tired I can't sleep. Ever experience that?) Anyway, whatever he has, I need to keep him from Carter because I don't need to little colds/viruses on my hands.

I have pictures to post, but don't want to wake anyone right now by getting the camera. Check back and hopefully I will have them up somewhat soon!