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. 

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!


cfallone said...

That video made my night! Love, love that. So sweet.

cfallone said...
This comment has been removed by the author.
Mary Evelyn said...

Oh my goodness! I love the video. Thank you for sharing. Those little guys are such great kids and you are doing a wonderful job with them (body and soul).

Anonymous said...

I loved that video. It brought tears of joy to my eyes. I can only hope that my twins will be that caring to each other someday. They will be 3 in 3 months and are at the stage where it seems that they are fighting more than getting along.
Best of luck with your decisions with the G tube. You know what is right for your children. My girls have been followed closely for growth as well since they weren't maintaining adequate growth starting around 16 months. Thankfully I have one who loves to drink the high calorie drinks and the other loves to eat and will drink some of the higher calorie drinks. I do question how much the flovent (neb treatments and/or inhalers) stunt their growth...when my girls were on them daily they did not grow at all. We had most of our growth in the spring and the summer when they were not on the medicine and were relatively healthy! I just found your blog through BBC FTT and spent hours reading about your two miracles. Thanks for sharing! One of my girls was just diagnosed with SB Occulta which was found since we are investigating her awkard gait.

Jill said...

That is the sweetest video EVER!!!!!

Oh, I hope you're able to work through this weight gain, appetite stuff. I know a g-tube wouldn't be the end of the world, but like you said, it's just one more thing, one more surgery. If it's needed, you (and he/they) will rock it, I have no doubt.