Last week

Wow, I've really fallen behind on updating the blog lately. But I'm sure you all will forgive me, since it's for a good cause. :-)

I've seen some very encouraging progress from Evan this past week-

1.) He's getting his other top tooth in, right next to the first one he was cutting a short while ago. This has made it a little more challenging to do certain things because he gets so fussy. But think how cute he's going to be when he smiles and shows off his four front chompers! :-) I love that stage.

2.) He is doing amazing on his speaking valve. Through trial and error, I've found that he does best when we put it on for 5-8 minutes, let him get his crying and choking over with, take it off again once he's just upset that we've put it on in the first place, let him catch his breath for a minute, stop crying, and then put it back on. That's when his cries become less "WAAAH!" and more "waah?". From there, we can leave the valve on for an hour, easily. He's smiling and playing, and trying out his new ability to vocalize. We haven't quite made our goal of 2 hours daily, but we're not far. After all that's what goals are for- if you don't reach a goal, you reassess, adjust, and continue forward. (my mother called me a bulldozer yesterday.... I really can't argue.)

3.) Oh, I am SOOO proud of Evan's sitting skills! He props up like a pro, and will correct himself very well when he overbalances. We hit our 10 minute mark. He's also showing more strength in his arms and back, and neck. This is from repeatedly getting him to try and pull up, lots more tummy time, and sitting up at every opportunity. We've also been trying to get him to try out more weight bearing. He does okay, but not where he would normally be at 9 months (he'll be nine months tomorrow). He's more interested in the bouncing sensation from me lifting him and lowering him toward the floor. But that's okay- being hospitalized for 8 months would put anyone behind, and I know Evan will do things when he's good and ready. My job is to show him what he could do and encourage him daily.

4.) EATING! Oh, you wouldn't think I would be excited about a spoonful of carrots and a few sips of water and formula, but BOY AM I! Yesterday, he sat with me at lunch, and I was able to get more in him than just tastes of this and that. It seems the eating is really where we struggle, but I will always be happy about inches of progress over nothing at all.

5.) Head turning- since we're doing better physically, I'm adding in another goal, which is to loosen his neck muscles up a bit. He's real tight on one side, which contributes to him cocking his head and still preferring to turn one way over the other. We're also stretching his oblique muscles (side abdominals) to encourage him to turn his torso instead of his whole body. This is a project we got from physical therapy.

This week, we have his 9 month check up, complete with shots.... I'm not too worried about that, since he's been such a trooper in the past about it, and I thank my lucky stars he isn't a child that has much of a reaction to immunizations. I got enough on my plate, quite frankly.

All in all, Evan is doing real well. As for me, I was getting just a tad bit stir crazy, having only left the house to go to doctor appointments and therapy once or twice a week with Evan. So I went and got groceries all by myself yesterday while Carl watched Evan. It's really strange, how anxious I got being away from Evan for an hour, after a month of always being with him. You would think I would lack that anxiety, since I wasn't with him for every hour for the first 8 months of his life.
I guess BECAUSE of that, I feel I need to be there for Evan every second. It's a guilt reaction, pure and simple, though there's no real reason for me to feel guilty. But I believe that when you have a sick child, it makes some of us feel guilty for wanting time to ourselves. But I know it's necessary for my own well-being to take an hour or 30 minutes here and there to give myself a break.

Time is really flying by- my baby boy will be 9 months tomorrow. Before I know it, he'll be a year old.

I admit, I mourn the loss of a normal infancy with Evan. Being a first time mother, I have nothing to compare it to, but I have seen other mothers getting to hold their babies after giving birth, getting to bond in those first precious months.... I just didn't get that. I had to work to hold him, 20-some-odd days after he was born, and to bond with him since he was so sick and so drugged for so long.

On the other hand, I'm so grateful that Evan is with us, and I get to be his momma, along with all it entails. I'm a lucky, lucky woman to have been given a child like Evan. :-)

Goals

This week has just flown by. I can't believe it's been over three weeks since Evan was discharged.

In the first week, I really just was adjusting to having him home. The second week, we had appointments, and I had to adjust to that.

This week, we've been setting goals, and taking steps to meet them. And I'm learning how to keep up on the household chores so I don't get overwhelmed.

I work best with clear goals in mind, and though it may seem to most (or everyone) that I fly by the seat of my pants, I put a lot of energy into visualizing how to reach those goals.

These are our goals for the next week-

#1- Get Evan sitting up longer and longer on his own. Today, I timed him at just over 5 minutes, and we did it several times.

#2- Sitting at the table to try eating twice a day. We did this today, and it went wonderfully. He took several tastes of applesauce both times. By the end of the second try, he had decided it was a game, and I enjoyed getting to see him laugh over something that just a week ago was a chore.

#3- Increase the time Evan is on the valve that allows him to breathe out through his nose and mouth. Again, it sounds like a simple thing, but he gets VERY Upset when we use it. It takes time before he calms down. But we've increased the time to 30 minutes. I hope to increase the time to 2 hours, total throughout the day by next weekend. Hopefully, this will help accustom him to being able to smell, and taste, and deal with the increased saliva. I hope that this will further our longer-term goal to get him off the trach by this summer.

#4- Work on Evan's pulling up, and weight-bearing, tummy time, and his ability to hold onto his feet. This involves various exercises to help him gain the flexibility and muscle strength to do those things he would normally be doing.

Mr Fussybritches

Yesterday, Evan was quite fussy. I felt around in his mouth (he's drooling quite a bit, and trying to gnaw on everything that comes within his grasp), and felt another tooth coming in on the top.
That will bring the grand total to three!

Of course, he needed LOTS of reassuring snuggles, a little orajel, and a tiny bit of Tylenol.

But yesterday was good, even though Lord Fussybritches dictated my every move. Still loving having him home, even if he's refusing to allow me to put him down, and when I do, he throws and epic fit.

There are plenty of times he forgets that his gums are hurting and plays like the little wild man he is. It's so cute.

Probably time for an update

Well! Well, well, well.... Where do I begin?
Evan has been doing amazing- I knew he would, he rolls with the punches, and home felt perfectly comfy to him by the first day.

Now, we are supposed to have help in the form of an LVN that comes to our house and assists me with anything having to do with Evan. In reality, this is far from what has happened.

On Wednesday of last week, I got a call from our representative from the home health company saying the nurse wasn't available, due to her daughter's daycare being closed after the tornados we had the day before. Okay. So day 2 comes, and quite frankly the nurse wasn't much help, mostly because I had weathered the day before (which was the hardest) all by myself, and I don't like giving up his care to a total stranger outside the hospital. I let her go early.
Day 3, we had a physical therapy appointment at 8 am, so I had asked her to be here at 7:30 so we wouldn't be late. She showed up at 7:45, we loaded him in the car, and made it there a little late. On the way out from the appointment, she insisted on holding him while I pushed the equipment in his stroller, and was kissing him as we walked out. It was a bit bizarre. She then got a call from her daughter's daycare saying that her daughter was sick, running a fever and would have to be picked up. I told her she could go, and finally insist that she leave because if her daughter was sick I didn't want her around my son.

Come Monday, I called to let the service know I wouldn't need her. They called back to let me know she had quit. Well, that works just fine for me, because I didn't want her to care for Evan anyway. they assured me I would have a replacement by Wednesday.
Tuesday was easy, but I got a call from the nursing service that someone wouldn't be available until Friday. Sooooo... I had already rescheduled Evan's pediatrician appointment from last Wednesday. It was rescheduled to this week on Wednesday. We had an occupational therapy session scheduled for Wednesday at 8:30, and his pediatrician appointment was at 1:30. And here I was alone, once again, unable to rely on the nursing service.
Well, I decided that I would not reschedule yet again, not knowing if we would have another issue arise later. I got up at 5 am (I'm up anyway, but I usually go back to sleep for a few minutes after taking care of Evan), and started preparing Evan's stuff for his occupational therapy appointment.
Portable oxygen tank? Check.
Pulse-oximeter? Check.
Suction? Check.
Emergency bag with trachs? Check.
Ambu bag? Check.
Diapers, wipes, toys? Check.

Then I got myself ready while Evan slept and was getting fed. After that, I woke him up, did all his morning care, dressed him, and carried him down to his stroller. I then took 15 minutes getting him loaded up into the car, and getting him comfy.
And we were off- after a few miles, and exiting the highway, I had to pull into a parking lot to suction him. We were running a tad bit late, after taking the time to suction and calm him down, we set off again, and drove the remaining few miles to the therapy clinic. And I unloaded him & all his stuff, which took a little under 10 minutes. We were 15 minutes late.

After an hour doing the occupational therapy assessment, I loaded him back in the car. It was 9:45, and we were late getting his 9 o'clock feed. Luckily, he fell asleep on the way home, do I was able to get there fairly quick. And I unloaded him and all his stuff yet again. We got his feed going, at 10:20, and after playing for a few minutes, he fell asleep, and slept until 12:15. It was time once again to start loading him up, since we had further to drive to see his pediatrician.
And so I loaded him and his stuff up again.
And it was a good thing we left at 12:30, because traffic was awful. It took me 20 minutes alone just to make it through two lights. it was during this time that I discovered my car is compact enough that I can lean back and suction his trach, one handed while sitting at a stop light.
We made it to his pediatrician appointment with time to spare. I unloaded him, cursing the fact that I neglected all forms of exercise while he was in the hospital, because I was starting to feel the burn, so to speak, from all the lifting I was doing.
The pediatrician looked him over. I think she and I will get along well, and she seemed knowledgable.
Good enough, we spent 45 minutes there. Time to load him up again, and try to get his 3 o'clock feed going.we had completely missed his 12 feeding, but I had thought about that, and allowed his feed from before to run longer, and was planning on doing the same with the rest of his feeds so I could make up for the loss of 100 ml of formula during the day.
It was 2:35 when we got home. I started his feed first thing after unloading him the final time. Then I looked around, saw nothing pressing, and collapsed into my chair. Whew.

So that was yesterday. After all that, Evan and I slept the sleep of terribly tired individuals that night.

Today, we took it easy. And tomorrow I'm supposed to have help. But after all that, I have to ask- do I really need help?

Day 4- Home

Well, we're starting to get the hang of this whole having Evan home thing. :-)
Just in time for the weekend!

I'm averaging 4-6 hours of sleep a night, which I consider to be fairly good, after only 4 days home.
It's enough to allow me to function, anyway.

Today my parents, sister and niece came to visit. We all had a good time catching up and playing with Evan.

We also had our initial physical therapy session, and set some goals for the future. I'm feeling pretty good about meeting those goals.
Next week, we have our (rescheduled ) pediatrician appointment, another physical therapy visit, and occupational therapy. We're still unsure when the speech therapy will be.

Because Evan has been in the hospital all his life, we are doing these various therapies so we can assess what he's lagging behind in, and form a plan for both myself and the therapists to follow so he will be on track.

As you will recall, he has a g-button for feeding. We're trying to introduce oral stimulation to him (sucking, chewing, textures, warm and cold) so that he can kick his oral aversion. We have our work cut out for us, there, because when a baby doesn't want something in their mouth (and I think most moms will agree), they can make a big ISSUE over it.
But we've started in on my personal home plan, which is sitting Evan in his high chair during dinner, having some baby food to offer him, his sippy cup with cold water, and allowing him to see both myself and Carl eating. In my case, eating ravenously because I've tended to skip meals while taking Carr of him here at home. I just get busy and forget.
Yesterday, Evan did really well during dinner time. He was fascinated with the process of us sitting at the table together and eating. I had baby food for him, which I would offer to him every so often, but he was much more interested in the juices from my meal, which I swiped in his mouth a time or two to see if he could taste it. He was intrigued. I'm also happy to report that he really likes the taste of apple pie filling. See, I had to test the theory that maybe if he could taste something a bit stronger than baby food, he would... You know, actually TASTE it. Having the trach pretty much eliminates the sense of taste. I know, I shouldn't offer him something other than approved baby food, but I'm just happy he seemed to take to it.

Whew. I need to say goodnight. This momma is pretty tired, and Evan is snoozing away in his crib. Tonight, I'm going to experiment with actually sleeping in my own bedroom for the first time since Monday night (baby monitor at my side).

Day 2- Home part 2

Whew. What an eventful day.

Splitting time upstairs at night and downstairs during the day entails moving quite a bit of equipment.

1.) Evan's emergency bag- includes extra trachs, scissors to cut the ties,and a manual suction in case our suction fails.
2.) Ambu bag- for CPR if Evan stops breathing.
3.) Feeding pump, bag & stand- because a boy's gotta eat.
4.) Oxygen converter and attachment- its a big blue box that converts room air to pure oxygen.The attachment reduces his oxygen flow to less than a liter.
5.) Nebulizer- for breathing treatments.
6.) Suction- incredibly loud device in the gray bag that sucks Evan's secretions out, because he can't get them out himself.
7.) Various supplies- this includes alcohol wipes, diapers, wipes, burp cloths, and toys.

And look! I have illustrated everything with pictures!

All in all, it's been a tiring day, but still hundreds times better than being at the hospital.

And I learned what works and what doesn't.

Day 2- Home

So today we're officially at home a full day. So awesome.

Last night was wonderful- we settled in after spending the afternoon and evening downstairs just enjoying having Evan home. We had the home supplies delivered for the next month , and introduced Evan to his room.

He LOVED IT! He was just fascinated by the monkeys, his bed, the animals on the wall above his bed.... We played and got him comfortable in between doing his care & getting ourselves ready for bed.

I slept in his room (which I plan to do for a little while until I get a handle on his schedule), and was able to settle in and go to sleep after Evan had been asleep for 30 minutes. I slept for 4 hours, undisturbed, and it was the best.
Evan was up by 5:15, and we played and talked. At 6:30, we moved him downstairs, and he is currently in his pack & play taking a nap.

Today, we have GETTING ORGANIZED on our agenda, and going to see his pediatrician. The getting organized is pretty important, since it's been a little hectic juggling everything since we got home, and we need to know what supplies we have, and where they are at a moment's notice.

So I'm leaving you with photos from last night & this morning. By the way, the one with Evan and the remote.... Daddy was explaining to Evan that GUYS get to hold the remote control, and he's expecting Evan to make sure and hold onto it while he's gone. Too cute. :-)

Day 1- Home

Well, folks, we're starting a new chapter in Evan's journey. Home.

It's such a relief to have him here with us.

Can you believe it? 8 months after giving birth to a beautiful boy, I finally have him home with me.
I can't wait til we start our adventures.

But I suppose I'll give it until next week so we have time to adjust. :-)