Thursday, March 14, 2013

Standing for the first time!!!

Alex has been showing more interest in wanting to stand.
this is new for him.

He'll pull himself to his knees and says
"look momma, I standing"
so sweet.

We've talked the last couple years of whether we should pursue long leg braces.
but before now, he was so happy cruising along in his wheels
and honestly his trunk hasn't been strong enough to try braces.

We were also told that the braces can be pretty heavy, cumbersome
and that a lot of kids just don't like them. 

but here's this sweet little boy
telling me he wants to stand.

So Momma calls the doctor,
we get an appointment
we say lets just give these things a try
and the doctor agrees. 

I know someday he's going to want to kill me for these pics in his diaper
but.........

I'm just proud of what a champ he is!!!
smiles the whole time he's being casted.

Fast forward one week...

Here's our boy standing on his own two feet
for the very first time!
 He holds onto his Daddy for dear life at first
he does his nervous giggle
  but he's all smiles.
He shakes his head yes when I ask him if he likes them.
video
Nothing prepares you for the flood of emotions you feel
when you see your child standing for the first time.

I remember feeling that way about Nicholas.
something about those firsts.

But this is one of those firsts we really weren't sure we'd have.
It makes it just that much sweeter.

People have asked if he'll eventually be able to walk with these braces.
We don't know the answer.

When we first asked for these braces for Alex,
we just wanted to help him stand upright,
be eye level with his peers,
get closer to things to play, interact.
And also for health benefits, 
get his muscles/bones stronger.

Really anything else is just gravy.

But I saw my son in those braces,
I saw his face.
I think he can do pretty much anything!
We'll continue to take this road where-ever he wants to go. 

Wednesday, March 13, 2013

update and a video.


My mind has busy busy busy processing all of the information from yesterday's GI visit. I have received a ton of messages and private emails with information and support and feel truly blessed to all the people who have reached out. 

This surgery that is recommended is not life or death and for that I am grateful. It almost makes it a little bit harder as my husband says because it would be elective, leaving it up to us to make a decision to act or not act. 

It boils down to simply the boys for whatever the reason(s) don't take in enough calories to maintain adequate growth---on their own growth curve---no one is trying to put them on a typical growth chart, trust me-

My theories are simply that we know that they have slow gut motility (things move very slowly through their systems so they FEEL full), they were born soooo little and already way behind the ball when it comes to growth. Also we knew even in pregnancy that their growth had stalled giving them their first failure to thrive diagnosis which was "intrauterine growth restriction". We knew early that the placenta was having issues with blood flow so the hope was that this trend would reverse when they were born. But looking back, we've ALWAYS had issues getting the boys to feed. First it was said it was because they were so premature, then it was because they couldn't tolerate the early feeding tubes, then they changed formulas a few times, then they were too little to figure out the eating/swallowing/breathing thing, and then it was reflux. It was always something, never a sit back and relax while your baby ate but instead a battle of could we get them to eat more than a couple ounces. 

While the story changes slightly, truly we've been battling with them over nutrition for a very very very long time (their whole life really). In my mind I truly wonder whether something just went awry when the genes were being handed out, or maybe something else was going on with their little bodies at the same time their appetite center in their brains were supposed to be forming and it just didn't finish, I don't know. Maybe micro preemies or at least my two will not just be small but tiny. 

Also on my mind are all the medications that they are and have been on. From the very early days, they needed all kinds of machines and medicines to survive.  We understood from that time that for every possible benefit, there were more possible side effects, some long term. Does any one even know what all of those are? I don't think so.

Even almost four years later they are on asthma and lung medications daily. I looked at just one of those medications and it said it could impact growth. I called the doctor about this ofcourse. They said it shouldn't by itself cause failure to thrive, just long term use is thought to possibly cause shorter stature but they said more than likely only by a quarter of an inch, not what we are dealing with right now. And certainly the benefits of the medications are outweighing that. I've talked before about the boys chronic lung disease, also known as BPD. Its one of those long term side effects caused by the ventilators they needed the first couple months of life. People mistakenly assume when I get a little crazy about trying to keep my boys away from other kids that I KNOW have respiratory issues that I just need to relax and let their immune system build. To a point I understand that but its their lungs I'm trying to protect until they are bigger and can grow some more healthy lung tissue. The lung tissue that they have now is like cardboard and it simply can not expel mucous the way yours and mine do. The only cure for that is time. Their pulmonary doctor said their lungs will continue to grow for 5-7 years and its in relation to their overall body size, like any of your organs. So hmmmm, they have definitely grown healthy lung tissue but given how little they are, they still have quite a bit to go. In the meantime, their nebulizer treatments help keep stuff out of their lungs and make it easier to breathe when they do get sick. 

As usual, I digress. 

Back to the issue at hand, I can tell you that my husband and I are exhausted with the food battles in our house. It takes over way too much of the day to day when there is so much else to focus on. Today, I'm analyzing the boys food intake and schedule with new eyes. When feeding tubes were first discussed over the summer, we were all gung ho about offering them new foods, sneaking in extra calories, extra pushing of their high calorie shakes, trying new recipes, adding duocal powder to everything but at some point its hard to keep up the intensity so you don't realize it, but you start to drop off the intensity in favor of getting busy with other "normal" day to days. We just can't afford to slack off about this, and we did just that. 

Today we are back at researching high calorie foods and recipes, changing up their schedule a bit, decreasing snacks in favor of trying to get more bang for their buck at meal time, anything we can think of to get and keep the weight on. 

I've received a number of messages saying that the G tube is not the end of the world and trust me, as much as my stomach was tied in knots yesterday about it, I do get that. We (and the boys) will manage that just as we've managed a dozen other things. I understand that for some children, this IS the best option of getting sufficient calories in safely. It may end up being what one or both of my children need at some point but in my heart, I just don't think we are there yet.

I desperately want to try other things, and try them again if needed. I want to know that before we hand our boys over to a surgery, that in my heart I've done EVERYTHING else first. Alex has had six surgeries in his short life and has two more surgeries in his future that we know about (an atrial septal defect repair and a scoliosis surgery). Honestly hearing about the G tube was kind of like the feather that knocked me over. I'm just not there yet.

The boys preschool teachers and therapists have offered to really encourage on their end, even said I could send in the boys duocal powder and they'll add it to any morning snacks they have, etc. This is not a journey thats often understood by people who aren't dealing with it personally and you can feel pretty overwhelmed and alone while trying to figure it out. I am so thankful that we have such a team of people around us who are so willing to help. 

I also spoke to my boys pediatrician and we are going to try the appetite stimulant again. I don't feel like it did anything last year when we tried it and in fact I think it really keyed Nicholas up in a negative way but the pediatrician suggested maybe it will have a better effect now that they are a bit older and honestly, its definitely worth another try. We are waiting on the boys endocrinology consultation which won't be for another six weeks. The next GI appointment isn't until July so I feel like we have some decent time to see what we can get the boys to first. So send positive thoughts our way, because here's hoping!!!

On a completely different note, I took this a few weeks ago and I thought I'd share it because I just think I have the sweetest boys around. We still use a video monitor because the boys room is on the opposite end of the house as ours and heck, its just kind of hard to give it up, especially when you get to see glimpses like this. 

I had just went to turn it on and quickly got my phone to capture this for Daddy. 

video
Mind you, Alex is not one to accept help from his brother easily, at least in the face of mom or dad.
 Its always "no Nicholas, I do myself."

and my husband and I are careful NOT to let Nicholas think he is in any way 
responsible for caring for his brother any more than Alex is responsible for caring
for Nicholas. 
(other than the regular be nice to each other kind of thing). 

But I've always felt that there's a very special bond with these two and 
I think Alex lets Nicholas be the little Mr. Mom he is when we are not around. 

My heart smiles watching this, hope yours does too!

Tuesday, March 12, 2013

feeding tubes

We had a lengthy appointment today with the boys GI doctor. We don't look forward to these appointments since growth is something that the boys obviously don't excel in. I didn't expect to leave with such a pit in my stomach. This was when we first became familiar with the term failure to thrive. 


Its not the first time a G tube has been brought up. But today they pushed harder about it. The boys made some initial weight gains after being on the high calorie prescription shakes back in the summer but its getting harder to get them to drink them and now they are less likely to eat much at all because the shakes fill them up. I feel like we are in a viscous cycle. Without the shakes, they are not taking in enough calories but even with the shakes, when we can get them to take them, its not enough to show adequate growth. 

I'm fine with my kids being small. I've said a million times before we are not giants either. But its MORE than discouraging to see them lose weight (they weigh less right now than at their last visit six months ago) and falling further away from their own growth curve. Trust me if they EVER got on any "regular" growth curve, I'd throw a freaking party--a BIG one too, I kid you not)!!!!

As with a lot of other failure to thrive kids, there's just no clear reason why they are not growing well. Food allergies aren't helping. I'd love to go through the drive thru and pick up some really tasty high calorie laden goodies for my boys but I can't. Heck, they'd probably only eat a couple french fries and be full anyway. A lot of the other big stuff has been ruled out which makes the path to go a lot less straight forward. Hubby and I were content (at least partly) to do the wait and see. You  just hope that at some point something will click with them and make them WANT to eat. At some point, you just kind of expect that a big growth spurt will happen, not to make them six foot mind you, but hey a couple inches would suffice. 

To spend so much of your time cajoling, bribing, sneaking in calories every which way and still end up with a LOSS is beyond frustrating. Really, I left the appointment near tears because as a mom it feels really like I'm failing. How can you have not one but two kids who aren't growing, who don't want to do something as basic as eat? This isn't something you should have to stress over, and work at. Getting your kids to eat healthy, yes that is the kind of effort I would understand. Prepping for the weigh in at GI lastnight and I'm sitting there trying to woo them into eating a couple bites of a stinkin pop tart, or a single bite of cupcake with frosting. Nicholas flat out refused. Seriously, what kid doesn't want that? I still worry that I'm "breaking" my kids with what I affectionately call the pop tart and oreo diet but when I give them fruits/veggies, they fill up on them so fast so again, I feel like we can't win.

So almost four years old and Alex is 31 inches tall and not even 24 pounds, Nicholas is 34 inches and a whopping 24.1 pounds. They had both gotten closer to 25 pounds on/'off but they can't maintain that. 

I have to submit a food diary for the both of them when we meet with the nutritionist again. I don't need a dietary degree to tell them that they are not getting enough calories in. I know that. What I don't understand and may never understand is the why. When they were in the NICU they were found to have "delayed gastric emptying" and I wonder if thats part of the story now too. They eat a couple bites and are full. With those high calorie shakes, they probably never feel truly hungry. However they were only put on the high calories shakes because the bites here and bites there before that never added up to enough for growth either so where does that leave us?

They are sending the boys to endocrinology for a work up. Alex already had one at two years old and it showed nothing abnormal but they said lets look again. Nicholas has never had one so we'll see on that. My gut is telling me that nothing will be found amiss. GI tells us they really have nothing left to offer other than the G tube. Taking my emotions out of it, I understand where they are coming from: two little boys (for whatever reason) are not taking enough calories in to grow, therefore, give them a way to get the calories in and hopefully sit back and watch them do just that: grow.

If it were that simple but my stomach is all tied up in knots; Thinking about an invasive surgery for not one but both of my boys and what if I put them through all of that and for whatever reason, their bodies are just meant to be teeny tiny? It might seem sort of silly but giving them a surgical "button" seems extreme to me. They are not children that CAN'T eat/drink safely. They DO eat and drink and I don't want them to lose that drive, what little of it there is. If we went this route, how long is it typical for and what is the weaning like? I've gotten several personal messages that some kids have lost all interest in eating by mouth when they are tubed and they are on it for years with struggles for getting off of it. I've also heard stories from friends of friends that it can do exactly what you hope, get kids over the hump, get them to get growing. Ofcourse with any surgery comes the risk for complications, infection, etc. Then there is the logistical stuff like how will Alex belly crawl or get on/off his scooter board without tugging on it? I'm just having a hard time wrapping my head around this. 

On the flip side, how long do we sit back trying the same things and getting very little results and at what cost to the boys? Do we put them through the surgery and take it out in 6 months, a year if it doesn't help? Are there ramifications for this? 

If I had a crystal ball to know that this surgery would turn things around for them, give them the added fuel that their little bodies need to grow and reduce the stress on all of us, wouldn't it be worth it? 

If any one is reading this and has experience, PLEASE feel free to message me. Oh and also if you have a working crystal ball, that would be lovely too :)