Merry Christmas

Christmas has been amazing this year.

Evan opened and has been playing with his gifts- we had a nice breakfast and a great lunch with ham, potatoes, rolls and green beans with plenty of leftovers for later enjoyment!

We have a fire in the fireplace and it SNOWED today! Such a rare event for us to have a white Christmas. We couldn't have asked for better. :-)
Most of all, we're home and together, which is such a key difference from last year, when Evan was in the hospital.

We'll be heading to my parent's this weekend to see them. So it'll be a really nice holiday all around.

For today, I'm one well-fed, happy pregnant momma. I'm warm and it's cold outside. My dear son has gotten to experience snow for the first time, and he enjoyed opening his presents.

Life's good.

Night terrors

Oh boy!

Ever since Evan's hernia repair in August, sleep disturbances have been on the rise. It's not too surprising, since the repair marked a big turning point for him in regards to therapy and development. And we all know that when toddlers get busy, sometimes they get so excited to stay busy that they wake up in order to practice some more!
But unfortunately, this is not always the case for Evan. He has been waking up inconsolable more and more often. I thought they were night terrors, but you really can't do much about them, other than waking your kid up slightly before they usually start in order to disrupt the sleep cycle. However, it has begun to take over our lives. Every other night, he is "waking", screaming and inconsolable, sometimes for as long as 25 minutes. He pushes away from me when I try to hold him or soothe him, crawls away when I put him down, and screams and cries until he chokes. I try to hold him without holding him too tight, because he seems to think he's being hurt somehow and trying to hold him tight makes it worse. But in the end, he just stops crying, and acts like he's asleep again. He might wake up fully, which sets off another bout of crying, this time allowing me to comfort him. But I can tell he's crying because he's confused, not because he's afraid or acting like he's being hurt.

It just flat out sucks to have to see your child go through that. We're trying to find ways to manage it... but there are few solutions a parent can try. I'm afraid we'll need to speak with his pediatrician on depth about it soon.

Also, he's developed a bit of a cold over the weekend. However, he hasn't slowed down for it much. Luckily, he already had his first dose of synagis to help him recover from nasty colds quicker.

Other than that, he really is doing fantastic. He's climbing up the stairs on his own, he's cruising around a bit. Before we know it, he'll be walking!
I feel like we're actually getting closer to him catching up with others his age. Or at least having them in sight, instead of miles and miles ahead.

As for me, I'm 19 weeks pregnant now, and I feel like I'm already hitting my third trimester! It doesn't help that I chase after a toddler every day, or that from Thursday night until this Monday morning, I've managed 14 hours of sleep, due to Evan's night terrors and the cold. :-/
One day, I hope to sleep again.

In the meantime, as always, we will manage the best we can. At least we have some really cute pictures to share!

16 months

When you have a kiddo like Evan, there are milestones, and then there are special days.
Lately, I have been remembering where we were a year ago. Last Thanksgiving, we had just moved him from the NICU to the Transitional Care Unit, and his Grandma Storey got to see him for the second time.
One special day coming up is his 16 month mark on the 30th of this month. Most everyone that has kids use 18 months as a celebratory time- yay a year and a half! But 16 months is particularly special to me because it marks 8 months since we got discharged. He spent 8 months in the hospital. So this is the beginning of the time that he has spent more time at home with us than in the hospital. :-)

And it couldn't come at a better time. Thanksgiving was a great success. We have our Christmas tree up, and I am singing carols loudly and off-key.

Ever since I found out I was pregnant with Evan, I started planning the things we would do for Christmas. It is incredibly important for me to instill a sense of fun and wonder in the holidays for my child .... soon to be children. Because I grew up without Christmas, and I gotta say it wasn't fun during this time of year. It wasn't all about the lack of presents. I really loved the lights and the music, and the celebratory mood. Good food, seeing family, having a tree lit up and watching Christmas specials on TV...
I want my kids to see all those great things that so many people take for granted during the holidays.

So if you see me sometime this month in public skipping merrily along, singing the only words I know to "Jingle Bells" at the top of my lungs- please excuse my excessive Christmas spirit. :-) Its all for a good cause.

Oh yeah, I have a blog!!

It may seem as if I have forgotten about the blog. It's not that, it's just that I am only now recovering from one of the most miserable three month time frame I've ever experienced. Morning sickness sucks.

So finally, now that I can eat and drink again, I feel human enough to update on everything that's been going on since my last posting a month ago.

Ready?

Okay, so Evan is crawling. I mean, this kid nearly crawled out the front door! (with Daddy carefully supervising) He is crawling to the couch and pulling up and seriously considering cruising.
Which is so cool and makes me so happy, I have to use a word that isn't in the dictionary- It's splendiferous!
:-)

He is gaining weight (slowly), but I've increased his feeds do much in the past month, and he has been a real champ. He grew an inch, which is so great, and he has all of his 1st molars in or cutting at the moment. He's even beginning to get his bottom canines!

Eating orally has progressed somewhat, but it has always been the slowest progress. We just have to be patient and keep trying to get him to eat enough to replace a formula tube feeding. We're getting there though.

He's really a talker now! He's saying "b", "d", "y" and "g" sounds, and has said "dada" and "ma" in appropriate situations more than once. He also says "de-de-de" as we go down the stairs because I've been encouraging him to verbalize what we're doing, like going up or down, etc.
He also will babble and yell for extensive periods of time, changing his tone and facial expressions. It's hilarious to watch. :-)

I am so thrilled about the holidays coming up. This time last year, we were only halfway through an 8 month stay in the hospital, and we didn't get to celebrate Thanksgiving and Christmas quite the way I had imagined.

This year, we're having two Thanksgivings, one with my immediate family members this upcoming Sunday, and another on Thanksgiving day with Carl's mother. I am so looking forward to both, because it's been too long since we had a good holiday.

Oh and Christmas!! I am so excited! Carl and I are planning to take Evan to see all the pretty lights later on. We have a Christmas tree, my very first one since I lived my parents, and I am going to so enjoy putting it up and decorating. I don't care if we have to barricade it so Evan can't wreak havoc. I love the fact we even get to worry about it.

We're going to take Evan to see Santa. I'm so excited about that.
AND we are going to be able to get Evan a few gifts this year, which is phenomenal.

All in all, it's going to be a fantastic holiday season.

Finally, let's talk about our other little one. I'm 14 weeks now, and so far everything seems to be progressing well. I have a checkup next week, which I'm really anticipating, but other than the morning sickness nightmare, I have been doing very well.
I'm hoping to see our littlest one in an ultrasound soon, because I am nervous about the baby's well-being after what happened to Evan.
But I swear I'm feeling just occasionally, the tiniest bit of movement in there. It's not surprising, since I started feeling Evan move at 16 weeks, which apparently is really early for a first timer. I'm showing just a bit, which you can see in a picture below.

Other than that, we've been slowly adding to our weekly routine. I'm now trying to take Evan to the park weekly, for both our own good, since the weather has finally cooled down. He really enjoys the swings! :-)
We keep busy otherwise with errands and therapy appointments, and all the playtime at home, working on everything.

Really, I expect to continue to see phenomenal progress in his physical and mental abilities. By Christmas, who knows what he'll be doing?!?

Snot factory

My little snot factory is still going strong-poor guy! He's not really feeling BAD, just producing epic amounts of mucus.

He's doing fantastic, pulling up on his own and moving around great- he's really trying to crawl a little, although its more a scooting around thing. It's cool, just so long as he gets the idea that he's capable of mobility on his own.

Feeding is going great- he's regularly eating 8 ounces of stage 2 baby food a day- we're still not keen on liquids, but I finally feel like we'll get there soon enough.
We cut out his continuous feed at night, and his frequent waking has significantly diminished. I'm so thankful to be sleeping in my own bed.

I've been quite thrown off by my extreme morning sickness. It's just had me down. Blech.
Which accounts for my lack of posting.

Decisions

I have come to make a lot of really tough decisions in my life ever since we found out we were pregnant with Evan.  The road has been pretty bumpy for the past 2 years, and I can only hope that the decisions I have made were not mistakes and maybe even made the road a little less difficult.

Two big developments arose recently- I found out I am pregnant again, and I received a job offer. 
If it was just one or the other, I'm sure I would not have been as stressed, but because it was both, I had some tough decisions to make once again.  I asked myself so many questions- Would it be beneficial for Evan to go to daycare at this time?  Is this the job I want?  Don't we need the extra income? 

After weighing the pros and cons, and tightening our belts, I decided reluctantly that I would take the job, enroll Evan in a daycare, and hope he didn't regress too much.  Mostly, I took the job because I knew I would need the insurance... More than half my paycheck would be going just to daycare, let alone expenses for commuting, so my actual income after that would be slight.  Again, another previous decision that we made- it was just too expensive to add me onto my husband's insurance, so I've been doing without.  Suddenly, that seems like a poor decision once you turn up pregnant unexpectedly. 

I jumped through all the pre-employment hoops.  I interviewed daycares.  I compared costs.  I filled out paperwork, and trained the daycare on Evan's g-button feeding.   I experimented with foods that would not make my morning sickness worse- all with no result, it just got so bad, I could barely stand to drink water. 

Finally, Sunday came, and I had everything set up to take Evan to daycare in the morning, and go to my first day.  Unfortunately, Evan had been congested for a few days, which I attributed to allergies.  But it got so bad Sunday night, he woke up and cried and threw up everywhere.
I was so upset at the thought of him being sick, and me having to start work. 
I started thinking about how much money would be spent on daycare, and how often he would get sick, and how much I would miss out on.  Would they really work with him on eating?  Would they make progress on his crawling, walking, etc?  And what about when the new baby came?  Was it really worth it to go to work for 7-8 months, just to take at least 6 weeks off to recover from another c-section?  Would I have a position if I took that long off?  Would I be able to afford daycare for both Evan and the new baby? 
Would it really be worth it for the small amount I would be making each month after initial expenses to miss out on Evan and all his progress?  Was this a fair trade?

I asked myself these questions while Evan was awake, and as I went to sleep.  And then the morning came. 

No.

Just, no. 

It's not worth it to me. 

So I called and emailed the people I needed to.  And I refused the job offer. 


Of course, after making a decision like that, knowing I need the insurance and the extra income, I have to question myself. 
Did I do the right thing? 

I suppose we'll see. 

At least I got Evan to the doctor and got him some antibiotics for his super-duper snot-making powers.  Seriously.  TONS. 

So busy!

Again, I haven't updated the blog recently. I'm such a bad blogger. :-)

Well, let's just jump right in on what's been going on in our world.

First of all, Evan has started back on his physical and occupational therapies, and he has blown their socks off.
Ever since the repair, he moves so much easier, and is getting on his hands and knees to try crawling (finally!) and going from a prone position to sitting up!!!! I'm so excited about that one. You should see how proud he is of himself.

Even more exciting news- Evan is eating. Yes, EATING. He's able to polish off a 4 oz jar of baby food in 30 minutes. That's 80-100 calories depending in the food. Which means we only use the g-button during those feeds to give him liquids, which we're still struggling with, but making some progress. As of yesterday, we have been able to replace a tube feeding with an oral feeding (and giving him just water through his gbutton) and reduce one tube feeding in half.

It's so exciting. :-)

We also have been patching his eye to help strengthen his other eye a little. He has mixed emotions about that patch.

In addition to that, we found out just last week that we are going to be expecting a new addition to our family. Yep, Evan is going to be a big brother.
It is an unexpected development (even more so because I have been on birth control) but I am happy about it.
Well, once the nausea passes, I'll be much more happy about it.

Been too long

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. 

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!