Tuesday, June 30, 2009

I'm not crazy....or a bad parent

Edit: Wanted to clarify - no one has called me a bad parent, I just can't help but feel that I am to blame for this....working mom guilt piled on with preemie mom guilt, it gets to me some days. Also wanted to clarify that I'm not saying I don't want advice, etc, just saying that the "problem" may not be rooted in naughty behavior stemming from not getting his way, so this may require a different approach.

Well, I've been blogging a lot about our struggles with Gav's behavior. Everyone has advice and opinions, but to be honest, unless you've had a very early preemie, it's not the same. Not that I don't appreciate it!

I have found some comfort in an online support group for micro-preemies (Gavin is just on the brink of being considered "micro" weight wise, but his early # of weeks qualifies him as such). I wanted to share a couple excerpts of emails that really touched me and made me realize I am not imagining a problem that doesn't exist.

"When "xx" was in the NICU, her neo told me that when discussing the brains of extremely premature babies, it is not a question of whether their brain has sustained some damage, but in what manner the damage would manifest itself. Dr. G did not necessarily mean brain damage in the sense of a cognitive deficiency, but rather simply how the brain processes information. I have come to believe that being taken from a nice warm, watery environment at 3 months, 4 months too soon and being put in the NICU cannot come without some price, maybe it is not noticeable, or maybe the brain compensates to the point where the problem seemingly goes away. Or maybe it affects a kid like "xx" in how she processes the world around her."

"My daughter is similar as well. I wouldn't call what she does as a tantrum (maybe others would) but it is like a heart shattering experience that she has if certain things don't go as planned (today it was because I don't know how to play the Wii, it was the wrong Wii game in the Wii etc). My daughter will erupt in seconds and will end throwing up due to crying (in about 1 minute).
I do notice it escaletes when there are other stressors in her life ie)increased therapy/Dr's appointments, tired, hunger.
I cann't give any advice but just to let you know your preemie is not alone in the extreme emotional experiences. My daughter is 4.5 and it has not stopped, it comes in waves"

Even in re-reading this, it brings tears to my eyes to know that we are not unique in this. What is equally emotional for me is not knowing how to fix this. And also, the guilt of having a preemie, the feeling that my body has failed my child, returns. I thought we were past our preemie issues. I thought Gavin had "caught up". The worst part is not the toll it takes on us, but the toll it takes on him. These outbursts do nothing to help his confidence or view of himself. I'm still looking into what physiological issues may be a root cause, because if there is a way to "fix" this I will. I'm not ready to resign myself to "this is the way Gavin is". If nothing else, there has to be a way for us to teach him how to deal with these emotions in a more productive manner.

Monday, June 29, 2009

5 Months Old!

Samson is 5 months old today - can you BELIEVE it? He is getting so big, he skipped right over his 6 month onesies and is already into 9 month onesies! He must be long - 6 month rompers and shorts still fit him, but those tighter onsies make him look like a little sausage.

So for anyone wanting to buy him clothes, buy 9 month stuff for the summer, and 12 month stuff for the fall. It is so crazy to me that he is wearing now some of the clothes Gavin wore when he was 12 months old!

Milestones - Sam rolled over this weekend - once. From back to stomach. Gavin slept inhis own bed ALL NIGHT for 2 nights in a row. I've also completely stopped cereal for Sam. He was pooping regularly on the oat cereal but crying at night for a long time. I thought at first it was teeth, but stopped the cereal and he is all better.

To catch you up on the happenings around our house - last weekend was Johnston Green Days, so Saturday we went to the parade and Chad took Gavin to the carnival. But for some reason (heat? tiredness?) he majorly freaked out on a couple of the rides. This weekend Chad took Gavin to the Celtic festival at Living History Farms. Random, I know, but they had strong man type events going on, which Gavin gets a kick out of watching on TV. He came home with a very awesome "pirate stamp" (tattoo). I have a picture, will post soon.

Sunday Gamma took Gav to Ames to watch Uncle Chris play soccer and then they came over for dinner. Which led to MFO (or major freak-out).

Let's preface this story by saying that Gavin had been extremely sassy and not a good listener all weekend. Now in regards to my previous post, this kind of behavior I think would fall into the "normal" category of preschool naughtiness. I don't know what was up this weekend, but he actually flat out told me "No" when I asked him to do something - and he's usually not that sassy to me!

So on to Sunday night, and this is an example of where I think he genuinely has an issue controlling his emotions sometimes. I liken it to when I was pregnant and hormonal. Not so much with Sam, but I was a raging lunatic with Gavin. I would get SO mad at poor Chad and upset and screaming over the DUMBEST things. And then I would wake up the next morning thinking "who was that crazy person and why did she treat my husband so badly?". I really think Gavin sometimes just can't control it, and that out of control feeling just snowballs and makes the situation so much worse.

But I digress. They came back to the house and everything was great until I said it was time to sit down and eat. Gavin wanted Chad to run races around the living room. It was time to eat. He proceeded to yell and scream at the top of his lungs at us from the living room. He wouldn't eat, we tried to let him watch a show. Nothing worked. We threatened to take away the Wii. We tried ignoring him. It just escalated. What a pleasant way to eat dinner! Finally Chad put him in his room, which never works because 1) he won't stay in there and 2) even if he does, he can't calm himself down so it's pointless. Chad stayed in the room with him for a while, and then I finally went in there. SO about 45 minutes after this all started, I finally got him to settle down by laying down in his bed with him. Then I convinced him to eat a little dinner, and after that got him to apologize for his behavior.

I've ordered a vitamin D supplement because I've been reading a lot about vitamin D deficiencies lately and that it can impact behavior. He's in the sun a lot, but he is darker skinned and we are very liberal with the sunscreen, so it's worth a shot.

A friend suggested a blood test for glucose levels. Also something I am going to look into. Other than that, I am at a loss. I thought maybe the food he was eating at the "house school" was contributing to his grumpiness - he would tell us for 3 pm snack they would have fruit snacks or reeses pieces. Not sure if that was true, or if that was in addition to a healthy snack. But now that I know what he eats, since I pack his lunch, and the behavior is still not better, I am ruling out nutrition. I've also cut out a lot of fruit snacks, etc with a lot of food colorings and additives that are supposed to be really bad and affect behavior and have seen no improvement.

I'll take any ideas anyone has. Nights like last night are so disruptive. And even worse, I know they don't make Gavin feel good, and there's nothing worse than seeing your child that upset. The typical defiant preschool behavior I can handle, when I know he's acting up on purpose or to try to get what he wants. But what I will now call the MFO (major freak-out) just makes me sad.

Thursday, June 25, 2009

Prematurity and Behavior

"Certain brain areas of children who are born prematurely appear to be smaller than normal and remain that way even by the time they're in the third grade. The differences concerned the areas of the cerebral cortex responsible for reading, language, emotion and behavior. They were more pronounced in boys than in girls, says a study appearing in the August issue of the Journal of Pediatrics."

Lately I have been doing a lot of research on behavior. Now don't get me wrong, Gavin can be one of the sweetest kids on the planet, as is hugely evidenced by his tremendous love of his brother. And Chad said it best the other day "He really wants to do the right thing."

But Gavin is EMOTIONAL. Sometimes the tiniest things set him off. Most kids are grumpy when hungry or tired, Gavin is downright, well a total nightmare. I would think by now the tantrums would be getting better, but they are not. I feel like we do the right things as parents. We say no. We sometimes say yes to show we are flexible and can compromise, as I've read we are supposed to.

I've learned that preemies have a hard time with "gray area". In which case I may be doing him a disservice by letting him drink pop occasionally. Maybe he can't understand that it's a "sometimes" thing and would be better served if the answer was always no or always yes.

I've learned that missing the last 3 months in the quiet, dark womb really interferes with brain development. Instead of that quiet slumber in which to develop, a preemie's brain is thrust into a world of bright lights, beeping alarms, and lots of pain. All things which that tiny brain is not prepared or supposed to be able to process and handle. How can we expect to them to behave completely "normal"?

A quote from a recent study - "It found that premature children had higher levels of anxiety, depression and aggression than full term children, and that they had a lower self concept. Premature children were found to have more disturbances at home and school. The smaller the birth weight, the less emotionally adjusted the child will be."

Now I am not saying that I think Gavin has any significant problems that are going to hold him back. But it's nice to have some validation of these nagging feelings I've been having. That even though I've read tons of articles on behavior and parenting and try my hardest, he is still a difficult child and nothing I'm doing seems to help. And the worst part is - he doesn't want to meltdown. He doesn't want to have privileges taken away, any more than we want to do the taking. He WANTS to do the right thing, but it really feels like sometimes he just can't control himself.

Some other Gavin traits that may be attributed to prematurity - lack of confidence (Gavin is a perfectionist and afraid of doing things for fear of getting it wrong - more so academic than physical), inability to adapt to new situations or the unexpected (as in the extreme freakouts we get when we tell him one person will pick him up and someone else shows up). We avoid telling him of any plans because if Uncle Chris doesn't come to dinner or Grandma Betsy doesn't come over on a night we told him, he just can't handle it.

It's just nice to know....we're not bad parents. We're not doing something wrong. There could really be a medical explanation for some of his behavior. And the thing about it is that it won't show up until they are older b/c all toddlers act up. Gavin just seems stuck in the terrible twos some days.

The only thing I haven't found is how to "fix" it. And what sucks the most is that he "looks" normal. He "looks" caught up. And he's really freaking smart. I'm not sure that knowing any of this helps anything, but it is kind of nice to have a little more insight into why he may be the way he is. I only hope it can make me a more tolerant and patient parent, and in that, we can start to turn a corner on this.

Saturday, June 20, 2009


Sam is rarely grumpy, but here is a shot of what he looks like when he is

Learning to crawl is tiring work. He can get himself scooted a very small way. He'll work at it for quite a while before getting tired out

This is typical happy Samson. Notice his lack of "lounging" in his lounge chair - he always wants to sit up like a big boy these days! Still not sitting on his own, but getting closer every day.

Wednesday, June 17, 2009

Good News!

Well, Chad was quick to point out that he was right, so we will give him credit here. The diagnosis is to just wait and see and hope he outgrows this.

X-Rays: showed nothing of concern. No stenosis (narrowing). While this test is not great for diagnosing Hirschsprungs, she was looking for a section that was stretched out which may have indicated there was a section with the missing cells below, and didn't see it. She didn't feel it was necessary to put him through the biopsy to diagnose this disease at this time. It's not a painful test, but he would be sedated, so I was happy about that.

Exam: showed no blood in the stool, which would indicate a food allergy. So I get to keep pumping as usual.

Reflux: She saw him "spit up quite a bit" as she said while we were there (it was actually a very small spit for him!) and observed he wasn't in pain, so our meds are working. She said to expect the reflux to get worse before it gets better.

She explained the whole pooping process and basically thinks he is uncoordinated and needs to outgrow it. We should keep doing to juice as that seems to help keep him regular, and told us how much he can have a day if necessary. We can also use suppositories if he is uncomfortable, but if we need to use them more than twice a week, we will go back in and start looking for allergies, or perhaps do the biopsy. She said we can also start the cereal again, and recommended trying oats instead of rice.

Now, we all know how impatient I am, and that I want a fix, and am not good at wait and see. BUT, you may remember when Gav was such a sick puppy between 9 - 18 months. Croup, ear infections once a month (even after tubes), 4 bouts of rota-virues, constant colds and cough, all leading up to a 3 day stint in the hospital, 2 weeks fever viruses, buying a nebulizer, and finally a trip to the allergist. I wanted answers as to why he was so sick all the time. The allergist, who had also been an immunologist, reminded me that he was a preemie, he was born with no immune system, and he was more than likely going to outgrow this. You know what? He didn't get sick after that appt. He got the usual one or two ear infections a year, but by no means continued his constantly sick cycle.

Sometimes you do just have to wait and see, and sometimes they really do outgrow it. So I am fine with the diagnosis.

And while I HATE that the doctor had me totally freaked out that this was something serious, I have to step back and think about why life throws these experiences in your path. That these things happen and make you realize what the priorities are. That I am a person that lets work consume my life and take a number one spot on the priority list before my kids. That it's ok to want a career and to be successful, but I need to remember that the reason I am working so hard is FOR my family to have a great life, but part of that great life includes me being present in their lives. I do need a kick in the pants every once in a while to make me remember that.

May I also mention something that made my heart just sing last night and confirmed how "worth it" all the pregnancy issues, etc it was to have Sam and to give Gavin a sibling.

Gavin, sitting on the couch last night, while I was sitting on the other couch with Sam. "Mom, can I see my best buddy?"

Oh yes, yes you can. It doesn't get any better than that.

Tuesday, June 16, 2009

GI Appt on Wed

Well, this was a little annoying. I am not the happiest with the communication from our Dr's office these days.

My phone rang last night and it was the automated reminder service from Blank. Telling me I had an appt 9 am Wed for th GI doctor.

No one called the schedule the appt with me. Fortunately, I was able to clear my schedule to make it work!

So good news, we have an appointment and will get some answers tomorrow morning. Bad news, I am thinking of switching doctors. I had a really bad experience getting Sam's synagis figured out as well, miscommunication/lost communication among the individuals that were supposed to be coordinating it. It's just hard to switch when they have all the kids history there, and I like that it is actually part of the hospital.

If anyone has a good recommendation on a pediatrician, I would love it.

Monday, June 15, 2009

Doctor, Doctor, Give me the news.....

I've got a bad case of.......impatience.

Sigh, still nothing. But Sam was happy as can be last night, even with all the passing around that was done of him at Gamma's. And for that, am I ever grateful.

Sunday, June 14, 2009

New Pictures

Gavin survived his first week at summer camp. He's learning not all kids are nice (there is one boy he says pushed in line), but overall I think he is having a lot of fun. The staff is teenagers overseen by teachers, so they have lots of energy to watch after these 5 and 6 yr olds!

<< Gavin feeding Sam rice cereal

This is what I contend with when trying to get them ready in the morning

<< Prune face. Remarkably clean don't you think? He's actually quite a skilled eater

"Mom, I need turtles."
"Huh? Turtles?"
"Yeah, I need turtles to run race, for my track and field."
So my inventive one, pulled the styrofoam pieces out of the box our TV came in and set up a hurdles course in our living room.
Nice form eh?

Saturday, June 13, 2009

Won't Know Anything til Monday or Tuesday

I talked to the nurse at our peds office, and she said that the test results were marked "unremarkable" (a good thing!) but that the GI specialist has not reviewed them yet.

So we just chill until Monday and Tuesday! While I would be totally ecstatic to learn there is no issue that requires surgery, it makes me wonder what the heck this could be then? They mentioned intolerance, but as far as I can tell, that should cause constipation or diarrhea, I haven't been able to find anything that says it would cause these motility issues.

Anyway I guess there is no point in speculating. I just want to figure out what this is, whatever it is, so we can move on to the next step of fixing it.

Still Nothing

Still no news to report, other than Samson still seems to be feeling well, he's still cleaning the contrast out of his system, as he had another blow out this morning. My ped used to have weekend duty at the clinic, so I may try calling up there after noon to see if he is in and if he has seen the test results.

Friday, June 12, 2009

No news is.......

Well, no news. But at least it's not bad news! And we've had such a great day, it's easy to convince myself there's nothing really wrong. Sam is always such a happy smiley baby, but since he's been "cleaned out" and is feeling better, he's been exuberant. Instead of merely smiling all the time, he's laughing and talking to me all his waking moments. He's such a sweet baby.

We stopped by the day care b/c the lady that takes care of him just loves him so much, and we stopped so she could see him and give her an update. We ran to Hy-Vee to buy groceries for dinner, and we stopped by the video store (3 movies for 5 nights for $1.06!).

Still no call. The X-Ray techs shouldn't be allowed to tell you when the doctors will get the results, and when they'll call. They said "they should call with results this afternoon". But how do they know? I don't even know if my doctor is in today, for that matter. So until I hear anything different, I am going to assume everything is just fine and enjoy this happy child while he's feeling so good.

Thanks for checking in on us and all your well wishes! Support means the world to us. I'll keep this updated with any news I get.

And Now We Wait

We are home from the hospital and everything went better than I expected. First off, we got there and I found out they would NOT be using barium, but a contrast solution instead. Can I just tell you what a relief that was, as I had been very worried about what the barium was going to do to his system. It definitely put me in a better place about the whole thing and was a sign that maybe things would be ok.

Sam did so well during the x-rays, and I hate to say he looked pretty cute in his peach hospital gown! The radiologist did not see any obstructions, and everything was flowing to all the places it was supposed to. All good news. Nothing is ruled out yet, he obviously has "a tight ass" as Chad so eloquently puts it. The few times he had diarrhea he has no problem getting that out, so I am not surprised that the contrast flowed through well.

Anyway, now we wait. Sam is happy to have his system cleaned out. I should be hearing from the doctor this afternoon.

Not this Child

Let me be strong for this day. Give me the ability to comfort Sam through this horribly uncomfortable test. Let these tests rule out the bad, instead of deliver a diagnosis.

I'm not ready for bad news. Sam is the sweetest, best natured baby. I'm not ready to put him through surgery.

What are the odds that I have two kids with weird fluky conditions? The more I read about the surgery required to fix these potential conditions, the less at peace I am with things.

He was supposed to be normal and healthy. We've been through this nightmare before. Let us find out that this is all precaution. Sam can't be sick. Please, not this child.

Thursday, June 11, 2009

I am Sam's Potentially Jacked up Colon

We went in to the pediatrician this morning as Sam was getting more and more uncomfortable and every trick in the book to get him pooping didn't work. Suppositories offered a little relief.

We need everyone's thoughts and prayers right now. I wasn't ready for the potential diagnosis. Actually I was, as I had done my research, but was hoping that we would be getting a prescription for a laxative and be on our way. Instead, upong doing a rectal exam, the Dr. darted out of the room to consult with the GI specialist. We are doing a barium enema tomorrow at 8:30 AM. They are looking for a narrowing of the colon, as the Dr said it felt extremely tight. Also, very little stool came out, and it was soft like it normally is. Which tells them he shouldn't be having this much of a problem pushing it out.

The two things this scan is looking for specifically is Hirschsprung's disease or stenosis. We are hoping it is neither, but a stenosis would be better. Here is a link for Hirschsprung's. He is not really exhibiting most of the symptoms, so please hope and pray this is not our issue. http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/

Both can be corrected with surgery. The GI offered a third option which is breast milk intolerance. Hard to explain the tightness with this one, but considering his problem worsened when we introduced rice cereal, maybe he has food issues. That would be the best case scenario.

At any rate, the poor child was violated today and was not happy about it. He is in a much better mood this evening kicking around on the floor making his happy baby sounds. Unfortunately, he has no idea what he is in for tomorrow.

Tuesday, June 9, 2009

I Am Sam's Finicky Tummy

I don't know, for some reason the movie Fight Club is in my head, hence the title of the post. No correlation to anything.

Anyhow, Sam continues to battle the one issue Gavin didn't have - well except for the whole upside down stomach thing! Gavin never had a feeding issue. He caught on pretty quick, started solids at 4 months (actual, not adjusted) and never looked back.

Poor Sam, on the other hand. I did read somewhere that babies born between 32 and 34 weeks will have more feeding issues than babies born prior to 32 weeks or after 34 weeks. Don't know why. Maybe because after 34 weeks they pretty much arrive knowing how to eat, and prior to 32 weeks, they really take their time with feedings. With Sam, since he arrived within that window where the feeding coordination is being developed, they just went ahead full force with feedings, and were pretty aggressive about it. Just a theory, please note I have no medical basis for this!

Anyway, we started rice cereal last week. By Saturday he was chowing down on it, but had stopped pooping. I increased his juice to twice a day, and even mixed the cereal with juice. As of today, we are going on Day 6 with no production. And he is not a happy guy. Needless to say we have stopped the cereal. I hope, hope, hope, this is just a phase. I forget that 33 weeks is still a preemie, and things will still not be smooth sailing.

I think Gavin enjoyed his first day of Summer Camp yesterday, but he "didn't want to talk about it". He's not good with change, even fun changes, so he was pretty much a total wreck last night. It can only get better (I hope).

Friday, June 5, 2009

Another One for the Books

Another week down - here is the recap.
Gavin had his final game, and it was so cute, the coach handed out medals and said nice things about all the kids. Afterwards Gav said "Coach said I was a good hitter and good batter!". Afterwards Gamma took him to DQ as was the old tradition from when I was younger. Not that I played many sports. =)

As you can see, we dressed Sammy up for the occasion as well. How cute is he?
Gavin is doing ok without his mimi, actually much better than I thought he would. Sam is continuing to try to sit up, and we have started trying rice cereal. He's not doing well with it at school, but it never occurred to me to tell them to mix it with milk. I think they are using water, and who wants to eat that? Tonight I mixed it with pear juice and he gobbled it down!

Friday we came home and "Uncle" Zach and Daddy were heading to Target. They were trying to surprise us, but we came home too early. They took Gav and came home with this:

Saturday Chad had to work, so I was on my own with the boys all day. Sam was not his usual happy self, which was odd, but he hasn't pooped in three days and has a cold and possibly teeth coming. We had a play date at the Jaeger's, which was surprisingly meltdown free on Gavin's part. We then headed to Costco and Hy-Vee, so I am so excited that my errands for the weekend are done! We bought all sorts of stuff for Gavin's lunches, because he starts his summer camp this week!

Tuesday, June 2, 2009

4 month check up

Our big guy gained a whopping 5 pounds in two months! He was 14 lbs, 1/2 oz and 24 1/4 inches long. He is in the 40% for weight and 30% for height. Despite looking like he has a big head, he is only 20% for head - go figure! Nice jump up the chart from 5% all around at 2 months.

We upped his Zantac meds since he has been fussy again with feeds the last few weeks and choking on his bottles a little. We are starting cereal but will be introducing new things slowly as he has shown an intolerance to formula in the past and is rather finicky about his milk. I am hoping he is just picky and doesn't have food sensitivities.

We also will have a brain ultrasound scheduled before his 6 month check up. If you remember he had a tiny cyst in his brain - the size of the tip of a pen. Nothing to worry about, but just following up to make sure it is gone. I'm not sure what it means if it isn't gone and am determined not to google it as I don't want to spend the next two months stressed out.


Price of 4 pack motorcycles, 10 pac Hot Wheels, Hot Wheels semi, Monster Truck, Sponge Bob camera, Spiderman shoes, and Wendy's happy meal: $80

Getting Gavin to throw his mimi away in the trash in front of Target: Priceless

Time spent pumping a 4 ounce bottle and setting it out for Sam's next feed: 20 min

Having to dump the bottle b/c he went 7 HOURS between feedings: Priceless

Now if only those 7 hours ended at 5 am instead of 3 am.