It's been too long since my last post- I'm sorry about that, it's been a bit hectic around here.
Evan recovered from the repair wonderfully, although we did have a bit of a scare about a week after because one of the incisions on his scrotum came open. After a quick visit with his surgeon, he told me that it was perfectly normal for that to happen, and it's not something to worry about.
Other than that, we've had a fun time trying to get sleep. Evan has been waking quite frequently during the night (sometimes every hour), and it had me pulling my hair out, bless his little heart.
We've gotten a couple of nights of solid sleep, but it's been difficult. Mostly, I've just been sleeping with Evan every night, but it's rarely restful for me, although it helps Evan go back to sleep. Evan likes his room when he's sleeping, which means I gets kicked, slapped, and pushed as far from him as I can get. It's a by-product from always sleeping in his crib at the hospital, I suppose. Either that, or he inherited my childhood sleeping habits. Who knows? Maybe that kind of thing is hereditary. :-)
The two job prospects I was entertaining earlier in the month did not pan out. Which is fine- as it turns out, we needed some time before trying to put Evan in daycare. The adjustment of that after the repair surgery would have been pretty darn tough.
Luckily, I've got a few more job prospects in the works. It always takes a few applications and interviews before I get hired. I hope to have a job in hand and a paycheck coming my way no later than late October. That gives me roughly two months of searching, applying, interviewing, and all the fun that comes with it.
Other news:
Because we have not been cleared to return to any therapies, we're focusing on eating. With no major interruptions in our day, we have been able to work on "speech/ eating therapy" more often throughout the day. He's showing more progress. Today, he took in about a half jar of baby food over the course of three sessions from 12-15 minutes. That amount of food is equal to 40 calories.
Now, I'm going to do some basic math "out loud", to illustrate the amount of progress we've made, and still have to make, and how much thought and planning goes into something as simple as food.
Evan's feeds are about 5 ounces every three hours. Formula has 20 calories per ounce. So every feeding gives him 100 calories, five times a day, equalling approximately 500 calories. He also gets his continuous feed at night, which is 19.27 ounces, over 8 hours. We'll round down to 19 for easy math. That's 380 calories overnight.
So Evan's total over the course of 24 hours is 880 calories.
In order to increase Evan's oral feeding without risking him spitting up because he's overfull, I have to consider how much food he's taken in throughout the day, and decrease an approximate amount from his feeding pump feeds. We don't want him to associate eating orally with feeling like a stuffed turkey after all! :-)
This process involves how many milliliters I've given him of actual food, how many calories the food provides, trial and error, and Mommy instincts. Still, we occasionally have had an Evan that spits up when I look at him cross-eyed.
A month ago, we were lucky to get 15 calories of baby food into Evan over the course of three days.
Because we are now taking in a more measurable amount during the day, I am planning on slowly increasing the time spent on feeding sessions and amounts given, as he tolerates it. Luckily, we've been working on all that FOREVER, so he at least knows the drill. It's just the huge setbacks after removing the trach, and others before that we've been fighting. I see nothing but progress in our future.
So here's a short term scenario, completely believable, but not quite as set in stone as a "goal".
Week of August 26th- continue to take in 40 calories every day over the course of 3-4 feeding sessions, with the goal of increasing calories. Feeding sessions should increase gradually from the current 15 minutes to 20 minutes by the end of the week.
Week of September 2nd- Feeding sessions should be 3-4 times a day, 20 minutes at a time, and increase as tolerated. Try to get at least 60 calories every day, with the goal for increasing amounts taken.
Week of September 9th- replace a bolus feed with oral feeding of at least 40 cals in one session. Continue to have 3-4 sessions in a day, and take in 40 calories over the remaining oral feeds throughout the day.
This is just an example of what I would like to achieve in the short term. Preferably before we have to change up our routine by putting Evan in daycare. Ideally, I would like to have him eating almost all his meals orally before we did this, but I feel it's best to expect slight results at the moment. If he does better, that would be great. If he does worse, we'll revisit our goals.
Sunday, August 26, 2012
Wednesday, August 15, 2012
Hernia repair
Yesterday was indeed a BUSY day!
I woke up at 4:30 AM, and began to get things ready for our visit to the hospital. We had to be there at 7, and surgery would start at 9 AM.
After getting myself ready, and packing up everything I could for Evan, I woke him up to get his g-button care done, give a breathing treatment, get him dressed, etc. I also got some good snuggles, because those are pretty essential.
We left at 6:20, and arrived to check in. I had completed all the paperwork and his vitals at our visit the day before, so there wasn't much to do but get a gown on him and wait. At least we snuggled some more, and he enjoyed flirting with the nurses.
At 9:00, they gave him the "goofy juice" to knock him out so the could give him the IV. I reluctantly let him go back to the OR, and made my way to the surgery waiting area.
A few hours and updates later, at 12:15, I was finally able to see my boy again in the recovery area. The surgeon had updated me earlier, letting me know that his hernia repair was taking longer because as suspected, he had another small/medium inguinal hernia on the right side, in addition to the large one on his left. The left side also was larger than anticipated, and the intestines had adhered to the abdominal wall.
Evan finally woke at 12:30 or so, and we were giving him some Pedialyte through his g-button to see how he would handle clear liquids after the anesthesia. He did great, but wanted to go back to sleep. I held him while he napped, and waited until the recovery nurses said it was okay for us to go home.
Finally, just past 2 PM, we were heading out the door.
By 2:45, we were home, and Evan was sleeping a little more comfortably. I set up a 1/2 feed, slightly diluted, and he handled it great.
We just sat and snoozed until dad came home, and I went to pick up Evan's pain medications.
He did great on his full feed at 6, and we were VERY grateful for the pain meds, because everything had worn off at that point, and he was ready for some relief. I've made sure to give him his meds every 4 hours since then, and he's been feeling pretty good... He's sleeping more than usual, and waking up more often for brief spaces of time. But that's to be expected, with the excitement of yesterday and recovery, and the pain medication.
Today is all about rest and relaxation for Evan, and if I can get a nap too... Well, that would be awesome!
I woke up at 4:30 AM, and began to get things ready for our visit to the hospital. We had to be there at 7, and surgery would start at 9 AM.
After getting myself ready, and packing up everything I could for Evan, I woke him up to get his g-button care done, give a breathing treatment, get him dressed, etc. I also got some good snuggles, because those are pretty essential.
We left at 6:20, and arrived to check in. I had completed all the paperwork and his vitals at our visit the day before, so there wasn't much to do but get a gown on him and wait. At least we snuggled some more, and he enjoyed flirting with the nurses.
At 9:00, they gave him the "goofy juice" to knock him out so the could give him the IV. I reluctantly let him go back to the OR, and made my way to the surgery waiting area.
A few hours and updates later, at 12:15, I was finally able to see my boy again in the recovery area. The surgeon had updated me earlier, letting me know that his hernia repair was taking longer because as suspected, he had another small/medium inguinal hernia on the right side, in addition to the large one on his left. The left side also was larger than anticipated, and the intestines had adhered to the abdominal wall.
Evan finally woke at 12:30 or so, and we were giving him some Pedialyte through his g-button to see how he would handle clear liquids after the anesthesia. He did great, but wanted to go back to sleep. I held him while he napped, and waited until the recovery nurses said it was okay for us to go home.
Finally, just past 2 PM, we were heading out the door.
By 2:45, we were home, and Evan was sleeping a little more comfortably. I set up a 1/2 feed, slightly diluted, and he handled it great.
We just sat and snoozed until dad came home, and I went to pick up Evan's pain medications.
He did great on his full feed at 6, and we were VERY grateful for the pain meds, because everything had worn off at that point, and he was ready for some relief. I've made sure to give him his meds every 4 hours since then, and he's been feeling pretty good... He's sleeping more than usual, and waking up more often for brief spaces of time. But that's to be expected, with the excitement of yesterday and recovery, and the pain medication.
Today is all about rest and relaxation for Evan, and if I can get a nap too... Well, that would be awesome!
Monday, August 13, 2012
The good, the bad and the sleepless
Starting out on a positive note, we have been seeing some great progress in the past week in all the "therapies"... Physical, occupational and even speech/eating!
Physically, Evan is just on the verge of crawling, and has become a human rolling pin. He also is learning to reach much better while sitting, propping himself and extending out to get a favorite toy.
In occupational therapy.... Wow, what a difference new toys make! He has been making so many leaps and bounds in his playtime activities and grasping... He's even beginning to learn to put his blocks through the right shaped holes!
The most exciting thing for me is the eating, of course, because we have struggled so much with it. Yesterday, we once again were able to feed him almost 1/2 a jar of baby food. We haven't had this much success since we took the trach out over a month ago. I nearly did my goofy happy dance, I was that happy.
We had his 12 month pediatrician check up and shots on Friday, and he did wonderfully. His weight and height are still on the lower end of the growth charts, but we've been seeing a steady increase, so I'm not particularly worried about it. Hey, he's ON the growth chart! I'm happy with that.
Most helpful of all, we finally got a referral for formal speech therapy to begin. I have been doing what I can when I can, but I will be so happy to have an expert to help guide us, because it's been very slow going.
I hope that he will be eating all his meals orally by age 2. I can't say whether that is a realistic goal or not, but it's a starting point, and I need a specific goal to work for. With real therapy on the horizon, I have set this goal with no real reference to how well he will progress... but as I said, it's a good goal to work for and I think it isn't too un-realistic.
Today, we have an appointment to see the pediatric eye specialist, for the multiple issues Evan has had with his eyes. He has the droopy eyelid, which we've noticed getting a little more droopy recently, and the nystagmus (involuntary eye movement), which has improved. Then there is the most important question: Does he have cortical visual impairment? I've been making mental notes as it relates to his behavior and eyesight. I'm still unsure whether his problems stem from this possible impairment, or some other issue that has not been diagnosed yet/ All I do know is that he IS different from other toddlers his age, and even infants younger than him. I've been wracking my brain, and googling everything I could in an effort to be as proactive as possible, and to execute experiments to see how he reacts in certain situations regarding his vision. According to the eye exams given to him in the hospital, his eyes are pretty normal, other than the drooping eyelid and nystagmus. But there are other issues that can cause some of the same "symptoms" and behaviors that I've been noting with Evan, and it's very important to me that we diagnose whatever it is correctly, so we can provide the proper sort of support necessary. I've been doing okay just "winging it", but it will ease my worries to have a specific reason for the odder aspects of his behavior when it comes to visual things.
Tomorrow is also a big day. We'll be going in for Evan's hernia repair. This will be the 7th time under anesthesia, and his 5th actual surgery. We will be at the hospital at the very least for a full day, if not over night for his recovery... It pretty much depends on how well he's doing afterward.
Finally, let's talk about the "sleepless" portion of the title. My sweet little guy has been waking up crying almost every night, and then staying awake for anywhere from 1 to 3 hours. Last night, for example, he woke up at 2:30 and did not go back to sleep until just after 5 AM. I managed to catch a nap or two during this time on the mattress we have in his room. But after he yelled again at 4:50 this morning..... well, I was awake. Last week, we saw a total of 5 nights where he woke up at 1:30 almost exactly every night, crying and nearly inconsolable. I'm guessing that it has to do with his teething.. he's cutting one of his lower incisors, another incisor is peeking up just below the surface, and I could've sworn that I saw a molar making it's way up too. So we've been treating his teething pain as much as possible. I also think it has something to do with separation anxiety as well. He's been VERY clingy when I pick him up those nights he wakes up, and refuses to go back to bed. He's fine as long as he's being held, but at the smallest hint I might be putting him back in his crib, he SCREAMS. Not even laying down with him on the mattress in his room works. By the time he's asleep, I am wide awake, so I've been quite the early bird lately.
That is why I've been running a couple of hour's sleep each night for the past week and a half. BUT! I have to say as exhausting as it can be, I'm so thankful he's doing something that falls into the category of "normal" for his age.
I will be updating tomorrow with how his hernia repair goes, complete with pictures and details.
Physically, Evan is just on the verge of crawling, and has become a human rolling pin. He also is learning to reach much better while sitting, propping himself and extending out to get a favorite toy.
In occupational therapy.... Wow, what a difference new toys make! He has been making so many leaps and bounds in his playtime activities and grasping... He's even beginning to learn to put his blocks through the right shaped holes!
The most exciting thing for me is the eating, of course, because we have struggled so much with it. Yesterday, we once again were able to feed him almost 1/2 a jar of baby food. We haven't had this much success since we took the trach out over a month ago. I nearly did my goofy happy dance, I was that happy.
We had his 12 month pediatrician check up and shots on Friday, and he did wonderfully. His weight and height are still on the lower end of the growth charts, but we've been seeing a steady increase, so I'm not particularly worried about it. Hey, he's ON the growth chart! I'm happy with that.
Most helpful of all, we finally got a referral for formal speech therapy to begin. I have been doing what I can when I can, but I will be so happy to have an expert to help guide us, because it's been very slow going.
I hope that he will be eating all his meals orally by age 2. I can't say whether that is a realistic goal or not, but it's a starting point, and I need a specific goal to work for. With real therapy on the horizon, I have set this goal with no real reference to how well he will progress... but as I said, it's a good goal to work for and I think it isn't too un-realistic.
Today, we have an appointment to see the pediatric eye specialist, for the multiple issues Evan has had with his eyes. He has the droopy eyelid, which we've noticed getting a little more droopy recently, and the nystagmus (involuntary eye movement), which has improved. Then there is the most important question: Does he have cortical visual impairment? I've been making mental notes as it relates to his behavior and eyesight. I'm still unsure whether his problems stem from this possible impairment, or some other issue that has not been diagnosed yet/ All I do know is that he IS different from other toddlers his age, and even infants younger than him. I've been wracking my brain, and googling everything I could in an effort to be as proactive as possible, and to execute experiments to see how he reacts in certain situations regarding his vision. According to the eye exams given to him in the hospital, his eyes are pretty normal, other than the drooping eyelid and nystagmus. But there are other issues that can cause some of the same "symptoms" and behaviors that I've been noting with Evan, and it's very important to me that we diagnose whatever it is correctly, so we can provide the proper sort of support necessary. I've been doing okay just "winging it", but it will ease my worries to have a specific reason for the odder aspects of his behavior when it comes to visual things.
Tomorrow is also a big day. We'll be going in for Evan's hernia repair. This will be the 7th time under anesthesia, and his 5th actual surgery. We will be at the hospital at the very least for a full day, if not over night for his recovery... It pretty much depends on how well he's doing afterward.
Finally, let's talk about the "sleepless" portion of the title. My sweet little guy has been waking up crying almost every night, and then staying awake for anywhere from 1 to 3 hours. Last night, for example, he woke up at 2:30 and did not go back to sleep until just after 5 AM. I managed to catch a nap or two during this time on the mattress we have in his room. But after he yelled again at 4:50 this morning..... well, I was awake. Last week, we saw a total of 5 nights where he woke up at 1:30 almost exactly every night, crying and nearly inconsolable. I'm guessing that it has to do with his teething.. he's cutting one of his lower incisors, another incisor is peeking up just below the surface, and I could've sworn that I saw a molar making it's way up too. So we've been treating his teething pain as much as possible. I also think it has something to do with separation anxiety as well. He's been VERY clingy when I pick him up those nights he wakes up, and refuses to go back to bed. He's fine as long as he's being held, but at the smallest hint I might be putting him back in his crib, he SCREAMS. Not even laying down with him on the mattress in his room works. By the time he's asleep, I am wide awake, so I've been quite the early bird lately.
That is why I've been running a couple of hour's sleep each night for the past week and a half. BUT! I have to say as exhausting as it can be, I'm so thankful he's doing something that falls into the category of "normal" for his age.
I will be updating tomorrow with how his hernia repair goes, complete with pictures and details.
Tuesday, August 7, 2012
Monday, August 6, 2012
Birthday PAR-TAY
What a big weekend!
Saturday, we prepared our bags and left the house at 12:30 to make the 2 hour, 15 minute trip to my parents. We arrived just before Evan's 3 PM feed, which I set up, and we settled Evan in and visited with my parents for a couple of hours. At 5 PM, Evan was playing happily on the floor, while I hovered anxiously, not wanting to leave for mine and Carl's date.
I finally managed to tear myself away, after repeating instructions and advice that was most likely unnecessary, and Carl and I whisked ourselves away for our big night out on the town (i.e- going out to eat).
We checked into the hotel, then chose to drive the 30 minutes to the nearest "nice" restaurant . We were delayed longer than I wanted, due to the first restaurant we went to serving me the wrong meal and Carl's shrimp tasting like it was dumped in a dirty lake just prior to serving it. Since I didn't care to wait for my meal while Carl made an effort to even eat his, I took the opportunity to say, "Nah, we're leaving."
The second restaurant was better, but by the time we got our food and were halfway done, Carl and I were both wiggling in our seats, and the conversation centered solely on Evan and how he was doing. Carl wolfed down his meal in record time, while I asked for a to-go box and the check, and then we high-tailed it back to my parent's home.
All in all, we were back by 7:40, a whole 2 hours and 40 minutes after leaving. It was fun, but I was pretty happy to be back with my boy.
After that, we spent a little more time with my parents, allowing Evan to nap, and then loaded him up to get him settled into the hotel room. Surprisingly, he was quite happy to get a bath in an unfamiliar bathroom, get his breathing treatment, and settle into the hotel-provided crib. It took him a little while to get to sleep, but after the late nap, and the excitement of the day, we expected it.
The next morning rolled around, and Evan slept great, only waking up once very briefly (5 minutes) around 3 AM. We actually got to sleep in for once, until 7:50. Woo-hoo!
We proceeded to arrange our morning, getting Evan ready, his breathing treatment and 1st feed of the day, getting dressed and doing his g-button cares. We helped ourselves to the complimentary breakfast, packed, got ourselves ready, and loaded everything up in the car shortly before 10 AM, and headed once again to my parent's house.
There, we allowed some time for Evan to get his mid-morning nap, before his party at 11, while we chatted.
The party was such a great success! I mean, it's a one-year-old's party, so it's not as exciting (or exhausting) as older kids', but it had some really great moments, and so many family members were there to meet and greet Evan, which warmed my heart. He had some good times opening his gifts (and some bad), but he really was very good.
Everyone did spectacular with their gifts, we really couldn't have asked for more, and I was so, so happy that so many people were there to celebrate Evan.
It was good seeing family members, some of which I haven't seen in over a year.
Finally, around 12:30, we loaded up the gifts and Evan, set his feed to start and started making our way back home. As expected, even though Evan was sooooo worn out, he didn't fall asleep in the car. He never does. We got home at 3, set up his 3 o'clock feed, changed his diaper, put him in a comfy romper, and he promptly fell asleep on his mat within minutes.
Whew.
After taking an hour to relax, I ventured out to get groceries and run an errand or two, and came back with something easy for dinner. Carl had a lot of fun getting Evan's toys out and setting them up, and playing with them one by one.
Once I clean the chaos that is our living room right now, I'll take some pictures of him playing with his new toys and post. Also, we have some birthday party photos to share. Soon.
Saturday, we prepared our bags and left the house at 12:30 to make the 2 hour, 15 minute trip to my parents. We arrived just before Evan's 3 PM feed, which I set up, and we settled Evan in and visited with my parents for a couple of hours. At 5 PM, Evan was playing happily on the floor, while I hovered anxiously, not wanting to leave for mine and Carl's date.
I finally managed to tear myself away, after repeating instructions and advice that was most likely unnecessary, and Carl and I whisked ourselves away for our big night out on the town (i.e- going out to eat).
We checked into the hotel, then chose to drive the 30 minutes to the nearest "nice" restaurant . We were delayed longer than I wanted, due to the first restaurant we went to serving me the wrong meal and Carl's shrimp tasting like it was dumped in a dirty lake just prior to serving it. Since I didn't care to wait for my meal while Carl made an effort to even eat his, I took the opportunity to say, "Nah, we're leaving."
The second restaurant was better, but by the time we got our food and were halfway done, Carl and I were both wiggling in our seats, and the conversation centered solely on Evan and how he was doing. Carl wolfed down his meal in record time, while I asked for a to-go box and the check, and then we high-tailed it back to my parent's home.
All in all, we were back by 7:40, a whole 2 hours and 40 minutes after leaving. It was fun, but I was pretty happy to be back with my boy.
After that, we spent a little more time with my parents, allowing Evan to nap, and then loaded him up to get him settled into the hotel room. Surprisingly, he was quite happy to get a bath in an unfamiliar bathroom, get his breathing treatment, and settle into the hotel-provided crib. It took him a little while to get to sleep, but after the late nap, and the excitement of the day, we expected it.
The next morning rolled around, and Evan slept great, only waking up once very briefly (5 minutes) around 3 AM. We actually got to sleep in for once, until 7:50. Woo-hoo!
We proceeded to arrange our morning, getting Evan ready, his breathing treatment and 1st feed of the day, getting dressed and doing his g-button cares. We helped ourselves to the complimentary breakfast, packed, got ourselves ready, and loaded everything up in the car shortly before 10 AM, and headed once again to my parent's house.
There, we allowed some time for Evan to get his mid-morning nap, before his party at 11, while we chatted.
The party was such a great success! I mean, it's a one-year-old's party, so it's not as exciting (or exhausting) as older kids', but it had some really great moments, and so many family members were there to meet and greet Evan, which warmed my heart. He had some good times opening his gifts (and some bad), but he really was very good.
Everyone did spectacular with their gifts, we really couldn't have asked for more, and I was so, so happy that so many people were there to celebrate Evan.
It was good seeing family members, some of which I haven't seen in over a year.
Finally, around 12:30, we loaded up the gifts and Evan, set his feed to start and started making our way back home. As expected, even though Evan was sooooo worn out, he didn't fall asleep in the car. He never does. We got home at 3, set up his 3 o'clock feed, changed his diaper, put him in a comfy romper, and he promptly fell asleep on his mat within minutes.
Whew.
After taking an hour to relax, I ventured out to get groceries and run an errand or two, and came back with something easy for dinner. Carl had a lot of fun getting Evan's toys out and setting them up, and playing with them one by one.
Once I clean the chaos that is our living room right now, I'll take some pictures of him playing with his new toys and post. Also, we have some birthday party photos to share. Soon.
Wednesday, August 1, 2012
Post-birthday
We had a wonderful happy birthday with Evan yesterday. Of course, his party isn't until this weekend, but we still had a great day.
My sweet boy woke up to me singing "happy birthday", which he thought was pretty cool. We then proceeded to have a pretty typical day, except I had a job interview in the afternoon. Dad took off of work early to watch Evan and I actually had a good time at the interview.
I didn't think his birthday would affect me so much, but I couldn't help looking at the clock at 1:40, and thinking to myself, "Evan was born at 1:36 exactly 1 year from today".
I couldn't stop smiling all day, and I sang happy birthday to Evan so many times, he probably thinks its his new theme song.
I can't explain it- I just felt incredibly content, happy, and SO PROUD. I had to laugh, because we were watching the Olympics, and seeing the parents when their child won gold.... Well, I was feeling that EXACT same pride and joy for Evan turning a year old.
Just stop and realize- we were told he had a 30-40% chance of not making it when he was first born. The fact that he is now a happy and mostly healthy one year old brings tears to my eyes.
And boy, do I mean he's happy!
Dad and I have so much fun playing with him. He gets so excited and playful, and is THRILLED to play a game.
He has such a big personality, and I love it.
My sweet boy woke up to me singing "happy birthday", which he thought was pretty cool. We then proceeded to have a pretty typical day, except I had a job interview in the afternoon. Dad took off of work early to watch Evan and I actually had a good time at the interview.
I didn't think his birthday would affect me so much, but I couldn't help looking at the clock at 1:40, and thinking to myself, "Evan was born at 1:36 exactly 1 year from today".
I couldn't stop smiling all day, and I sang happy birthday to Evan so many times, he probably thinks its his new theme song.
I can't explain it- I just felt incredibly content, happy, and SO PROUD. I had to laugh, because we were watching the Olympics, and seeing the parents when their child won gold.... Well, I was feeling that EXACT same pride and joy for Evan turning a year old.
Just stop and realize- we were told he had a 30-40% chance of not making it when he was first born. The fact that he is now a happy and mostly healthy one year old brings tears to my eyes.
And boy, do I mean he's happy!
Dad and I have so much fun playing with him. He gets so excited and playful, and is THRILLED to play a game.
He has such a big personality, and I love it.
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