Thursday, May 20, 2010

Numbers

Numbers......


I have a love/hate relationship with numbers. We have clung to them even before the boys were born. The boys were diagnosed with intrauterine growth restriction at week 19 of my pregnancy. A fancy term meaning that they were already smaller and started to grow slower than expected. This trend continued the length of my short pregnancy. During this time it was determined that there was restricted blood flow in the placenta for them and we were watched weekly and quickly twice a week before finally being admitted to the hospital at week 26 for around the clock monitoring. Every week we prayed that the boys would have a growth spurt and "catch up" so that we (and the experts) could stop being so worried. No one knows what causes this and there is no "treatment" other than monitoring and then delivery when its safe. We lived and breathed those numbers, prayed every night that every thing would be okay and that they were truly getting what they needed even if the numbers were creeping up slower than they should be and the boys were so little. They were delivered at just 28 weeks when the blood flow looked to be not only restricted at times but also reversing and the babies were becoming distressed.

After they were born, we still concentrated on the numbers pretty much every day of their over 100 days in the NICU. They were weighed every day to monitor their growth, and later when they were able to tolerate tube feedings their intake was documented, every diaper was weighed. We lived by the numbers then too. We celebrated every single gram gained, cc of food "tolerated" and stressed over each of the losses and all of the days that feedings had to stop again because their bellies were not able to handle even the smallest of amounts. Their systems were just too immature.

Later when we got them home, we continued to document every feeding, how much, and how often they had wet or dirty diapers to track their progress. The visiting nurse came every week to weigh them and we held our breath those early weeks/months that they were getting enough and that they were growing okay at home. They were both on extra high calorie formula to help with this, especially since with their reflux, bottle time was always thinking of silly songs and things to do to distract them enough to just drink a little more because they would often stop at just an ounce or two. To this day, we still don't measure by the ounce, we measure by the cc (other NICU parents will definitley get this). Often the boys will still fight to get the 120cc bottle in (thats 4 ounces). We also measure Alex's head circumfrence to know if his head is growing too quickly, one of the signs that his shunt might not be working.

Numbers, numbers, more numbers, whether the boys were having a good day or not have in our minds largely been determined so much by the numbers. Now that we are out of the critical time, we are trying very hard to "unlearn" being so attached to numbers.

Enter one unbelievable year later.....our gorgeous boys head to toe with baby rolls that we just want to eat up:



In one year they have gained about 15 pounds. They are roughly 16 and 16 and a half pounds (and yes, every half pound counts, ha,ha). They have come a long way baby!!!

Still we had a nutritional consult last week for Alex. Due to his spina bifida, mobility issues, constipation, etc. they want to make sure he's getting everything he needs nutritionally. I was actually worried that with all of our practice and constant encouragement of getting our babies to eat due to reflux and prematurity that perhaps we were now over feeding them and had no idea how much was the right amount to offer between formula and solid food. I was really curious what we would learn and how far off the mark we were. The nutrionist was excellent, asked a lot of questions, weighed and measured Alex and "ran" the numbers. Surprisingly we are right where we need to be in the calories he needs for his height. She did recommend reducing the high calorie formula down to 20 calories which is what normal store shelf formulas are. I actually thought that GI would have recommended this our last visit so I'm not too surprised by this. This will trade out some of the calories from the formula for adding in a little extra grain and protein that he needs more of in his diet but other than that we are actually on target with calories, fruits and veggies!

Now the numbers I didn't like: Alex is 16 pounds, 7 ounces and only 24 inches tall. She said that he is the weight of an average five month old but the height of only about a three and a half or four month old. I was shocked. Maybe I shouldn't have been. Obviously he's little, given how tiny he started out but I guess I didn't expect to hear that little. I thought maybe 6-7 months. Technically he's one year old, but if you subtract the three months he came too soon, he's supposed to be adjusted to about 9 months old developentally and physically. So to hear that he's the size of roughly a four month month old? I don't know why it matters but it feels like a long way from where we are "supposed" to be. They say that premature babies "catch up" in growth and development by age two. But in the same conversation I"m told many of these studies were done before many one and a half babies survived so that perhaps it might take these babes a bit longer than that. Whats the rush, we've got plenty of time for them to grow, right?

Still I thought about these numbers all weekend. I don't know why it bothers me so much. I think because partly it reminds me of the hurt and angst I feel at my body not providing a good home for them, not nourishing them the way they deserved, and that they are still living the effects of that. I need to get over that because its simply not productive. So I've done a lot of thinking these last few days. I know that God has a wonderful plan for these boys, I have felt that all along. He has brought them (and us) through so much. Why should it bother me that they are not "average"? Who wants to be average anyway? These boys are soooo much more than average, they are so much more than "numbers", they are quite honestly spectacular (in my not so unbiased opinion)!!!!!







Where are the numbers that add up the level of their happiness? The number of their heart melting smiles and giggles that erupt completly unprevoked that leave me in stitches and makes them laugh even harder; an awesome cycle! What about the number of times their sweet little eyes light up whenever they see us walk in a room, the sheer number of times their arms move up and down or Nicholas's crazy monkey feet thumping away when they can't possibly contain their excitement by a favorite toy singing or their mommy and daddy acting silly. Their squeels of delight....These are all the numbers I want to pay attention to, these are the numbers I want to live by and focus on getting higher.

As a society we put way too much emphasis on numbers: our age, our weight, our salary, when our kids are supposed to be doing x,y,z. These are just a few examples of numbers that are supposed to "mean" something. We think if we just look a little younger, drop a few more pounds, or make a little more money then we'll be.....what? Do those things really make us any happier or do we end up reaching for the next thing when we've accomplished that? Some of us get stuck in the perpetual reaching for any of these things, so busy persuing this goal that we forget to take in what we already possess and we "forget" to enjoy where we are NOW, thinking we'll just be happy whenever we finally get to our destination. What if we never get there or if it takes so long to get there, we miss out on enjoying the view along the way? How sad if we wish our time away. And really, who cares if the boys need a bit longer than "average" to reach their milestones, will this really matter later in the grand scheme of things at their high school or college graduation that they took a bit longer to sit up on their own?

I"m not saying not to reach for things, I feel like I'm always doing "therapy" outside of therapy time with the boys, helping them get stronger to sit up, crawl, stand, etc. We play while doing it. They LOVE being more "independent" already. I think challenging ourselves, the obstacles that we find in our way are meant to make us stretch and grow. But I'm starting to realize that we can get caught up chasing things (numbers, all the "supposed" to be doing, supposed to be feeling, time lines, guidelines...) that in the end don't really add up to whats really important!

Wow, sorry I don't know how we took this detour and crashed into Holli's arm chair psychological ramblings.  I thought about just backspacing it all but I think I'll leave it in afterall. A little rambling now and again never hurt anyone, right? or at least maybe I can make up for it with some really cute pics:




Boys in their fancy new ride: a side by side stroller so we don't feel bad always figuring out who gets the back and the not so great view. Plus this one kicks butt over the grass and rougher terrain, perfect for our plans for camping and going to the parks! (and it doesn't take a rocket scientist to figure out how to unfold and collapse it--a huge plus)!!! You can see here that the boys seem to like it too, they were almost asleep once we got back from our walk!


Ofcourse Mark is now wondering if collecting strollers is my new hobby :). I almost feel bad about this as I plan to get even one more (ha,ha). A single stroller so I don't have to lug the double ones the days I just get to take one to an appt. Hey, one double stroller does NOT fit all situations and if it makes this mama's life just a bit easier, who can really complain about that? A happy mama is a happy everyone, right?





Pop Quiz: Can you tell who is who? Is it just me or they looking a little more alike these days? There are some pictures I take lately that I go back to upload them and I have to do a double take on who is who. Especially when they have hats on. Alex has a bit more love on him and his head is shaped a little differently due to the hydrocephalus but their faces seem to be more similar to me these days...hmmmm.....well either way both just gorgeous!









and is there anything sweeter than a sleeping baby?


YEP!!! TWO sleeping babies (at the same time!!!!)




AND when they wake up in a sweet playful mood!!!!!

Life is good.....drink it in!!!

4 comments:

Kari said...

sooo sweet. and so true. thanks for the reminder as we have clinic appointments coming up which will be full of...NUMBERS!!

caryanne said...

Just a tip...we actually have 2 single strollers. LOVE THEM! Great for when Mom and Daddy take the boys to the mall (or anywhere else)...way more accessible and easy for one parent to go off with one baby. We love having 2 singles.

Heather said...

Baby Joggers ROCK! Looks just like the one we have that has gotten a LOT of use. Worth every penny! The boys are beautiful and your pics are precious!

Anonymous said...

I just love the pictures! Where ever did they get those big, beautiful eyes!!
Karen