Saturday, May 29, 2010

Pirate and monkey

The days have been good to us. The weather has been beautiful. In between our regular therapy and medical appointments we have enjoyed playing outside (porch, deck, taking walks), anywhere that will give us some shade against what has been some unusually hot, hot days. Anywhere that doesn't actually touch the "green stuff" that is. Do all babies have an aversion to grass? I think its rather funny to watch Nicholas hold up his feet FOREVER just so they don't touch it.

Recent appointments have been all pretty positive. Neurosurgery check up--great--no need to return for a WHOLE entire year (knock wood). Our weekly helmet appointments have been able to be knocked back to every other week (yeah more room for play time). Our neurosurgeon recommended Alex stay in the helmet until July when he will be one year adjusted age. He's really been so hot and sweaty already with the recent weather that I am a little disappointed he has to be in it through July at the heat of the summer but I won't mess with success--that little helmet has done an amazing job on his sweet head!!

Alex also was seen this week by his pediatric opthamologist who said its time for patching. Our little man will soon be the cutest pirate you ever did see, for a couple hours a day anyway. We had noticed several months ago that one of his eyes was turning in every so often and took him to see his eye doctor. We have been on a watch and wait see since then but it hasn't gotten any better. This week's visit said he is really using his left eye predominately and there is a concern that because his right eye is getting "lazy" basically, the brain may start only getting input from the dominant eye and start ignoring any messages from the weaker one. We will attempt to make his weaker eye work harder by patching his good eye a couple hours each day. We will do this for two months and then have another check. I have to admit I was feeling a bit defeated when I left the office that day. All I could think of was having to hold him down to stick this patch to his eye every day when we already fight with him every night to tape the oxygen tubing to him. He just hates it and has this heart wrenching sob so I always feel like I'm traumatizing him. However the patching may save him from having to go on to get glasses or even eye surgery so its definitely something we have to try and hopefully more than worth it!

We just started patching this morning and I shouldn't be surprised, Alex
as always was a trooper!!!! And really isn't he the cutest?
tubes, wires, helmet, patches--they are just no match for our boy!

On a really great note, Alex was also seen by his pulmonologist and got another chest xray. His lungs look much better than the one just six weeks ago. They said he still has the lung scarring of a baby with BPD but the upper lope of his one lung was no longer collapsed and looks to be oxygenating just fine. Can you hear a huge hallellujah from here? We were so happy to hear this news. They gave us the go ahead to make another wean to his oxygen level at night and see how he does for a week and its already been a few nights and he's doing EXCELLENT. If it continues to go well, we call next week to get an overnight oxgyen study done and I don't dare to say it too soon but it would be amazing if soon he didn't need it anymore!

Any parent who's ever had to deal with oxygen long term totally gets this. Obviously knowing that your child is well enough to not need this is HUGE. Second, third, and fourth to this is not having to battle your child to keep the oxygen prongs in his nose, trying to get the darn oximeter on his foot just right so you get a good "reading" (this can take several tries every night and sometimes having to go in the middle of the night to re-do it because its come loose, etc. I know I've talked about this before but I will not miss hearing that alarm at all hours of the night and getting that instant rush of adrenaline not knowing if your baby is having a hard time breathing or if the oximeter is just flaking out again......well I don't want to jinx it but whenever the day does come, I will certainly be in the mood to have one big bonvoyage party to all the oxygen equipment!!!

Lastly Alex has been having weekly feeding/speech therapy to address issues with choking/gagging and he's already made such improvements in the past month. We are now up to chunking up some of his favorite foods out of the jar as well as breaking up bits of cheerios and crackers in a bit of juice or water and he's loving it. His brother ironically is actually taking longer to be convinced at the new textures and is gagging and refusing more of the new foods. Go figure. Also the speech therapist has been working with Alex on opening his mouth more and vocalizing. Alex would very rarely open his mouth to make any sound unless he had his hand or something he was teething on. It would take an army most days to get him to open up his mouth at all. Not uncommon we are told with babies who were on ventilators for a period of time and all the times he has had mouth/throat suctioning when he was an infant and even recently with pneumonia. Just in the last week we have seen HUGE progress with this. Take a look at these awesome pics of open mouth smiles on a gorgeous baby who is finally feeling a lot less guarded and not locking his mouth shut.

It just doesn't get more picture perfect than that!!!!

Nicholas is doing great as well. He recovered from his surgery like a rockstar. He came off of the anesthesia with no difficulty and was up playing within minutes of being awake. The nurse commented that she picked him up to hold him and he fussed so she put him back down on the crib and he was rolling around happy as a clam. Sounds like our Nicholas.

He is busier than ever. He's army crawling every where and his favorite place is looking out the front door and then slowly swinging the front door more open, more closed, more open, close. I am mystified how this simple thing can occupy him forever.

picture caught by my phone, is this not the sweetest thing?

Mystified and thankful because when he's not at that front door these days, he could be anywhere. He really is non-stop busy. When he's not crawling around looking for the next thing to get into, he's trying to pull himself up to stand on everything.

He also loves doing acrobatics, he does the funniest little thing where he puts his head on the floor or crib and puts his butt up in the air but his legs are straight---looks like a tripod--its just hilarious. He keeps working on this over and over. I wish I had a picture of this. Most days, he tires me out just by watching him.

I'm not sure if I've mentioned this before but we affectionatly call Nicholas "monkey" or "monkey feet". He uses his feet like an extra pair of hands. seriously. Maybe a lot of kids do this, I'm not sure but it sure makes us laugh to watch every time he does it. Hopefully it makes you smile too!

Thursday, May 20, 2010



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!!!

Sunday, May 9, 2010

Mothers Day

My second Mothers day was spent exactly how I would want it, with my family! The bonus was that this year we were not in the hospital, I didn't have to ask for permission to snuggle my lovies and my lovies are healthy and home! Who could ask for more?

Last year at this time my babies were just eight days old. I was able to hold Nicholas for the very first time ever the day before Mothers day when he was a week old. It was only for a few brief minutes but those moments were utterly blissful. I'll never forget it. My heart was not complete though at the time because it would be several weeks more before I would be allowed to hold Alex for the first time. What a difference a year makes!!!!

This year, we didn't really do anything particularly special, and yet it was a truly wonderful day. All the "boys" spoiled mommy by letting me sleep in an hour longer (a true gift to be sure) and then bringing me coffee in bed (ohhhh such a treat). They picked out a beautiful "two peas in a pod" necklace which I LOVE, LOVE, LOVE, chocolates (love, love, love) and fun socks!!!! I think the socks were really gift from the boys TO the boys since they have this really funny appreciation of feet and especially ones sporting all kinds of colors,  stripes, designs, animals, the more wacky the better. I love that they will roll or scoot from several feet away just to come check them out, grab at them and giggle. Just one of the many things that can make a mamas heart melt so actually on second thought, definitely a gift for mama!!!

We then headed out to our favorite coffee shop (aptly named Jitters) and shared a booth that snuggled all four of us in so nicely. Mommy and Daddy shared a yummy sandwich in between holding and feeding squirmy babes. Our boys did lots of flirting with the other patrons and seemed to enjoy the time just as much as we did. We then brought our toasty drinks with us for the road (Its May but it was snowing in upstate NY today). We didn't want to go home already so we decided to take a drive instead as the babes drifted to sleep in their comfy cozy seats, and the radio softly playing in the background. Mommy and Daddy enjoyed the scenery, just being out and about and having a few quiet minutes of sipping our drinks and catching up.

The boys sleep "timer" went off predictably at just 30 minutes and by that time we realized we had driven to the other side of town and were very near their grandparents house so we took a chance that they would be home and surprised them with a visit. There was no shortage of hugs and playing there, while the adults chatted and even snacked on yummy mothers day treats. It was a really nice way to spend the day. We filled our boys tummies and packed them up again in time to steal another nap for the ride home. It was a full and happy day!!!

Daddy was even able to snap a couple pictures before the day came to an end. I'm usually the one behind the camera so its nice to have a couple of me with my boys! (although they were just a bit too tired to flirt with the camera tonight, thats okay, still love em!!)

Also I would be totally remiss if I didn't say Happy Mothers Day to MY mom who is one of the best moms a girl could have. You're always the first person I think of, call or write to with the best or worst of news, or just something silly that I want to share. In the last year alone, you have sometimes literally held me up when I felt like I was going to fall down, you have cried with me on some of the toughest of days, celebrated the highs with me, I know worried for me. You are there not just for the "big" things happening with me and the boys but the every day things. You attempt to stay in the background never looking for recognition or praise for all the work you do, all the vacation days you use to bring us support as we face another hospitalization, or surgery. You keep us fed with food and love, wash our dishes and babies clothes when we have simply been too tired to pay attention to such things.  I know there is nothing that I can say that can possibly convey my gratitude for all that you have been to us in just this past year alone, THANK YOU is all that I have.

I guess honestly the best gift that I have this mothers day is to have been given a mother exactly like you, and to have the privledge of being able to watch her love and dote on my children, and for them to know the love of their Nana!

Friday, May 7, 2010

Medical update

We've had so much fun stuff going on that I have neglected to give just a general medical update on the boys and since several have asked, here are the highlights.....

You have probably noticed that in most if not all of the recent pics, Alex has been wireless!!! We are so thankful that he is keeping up his oxygen during the day and does not require any supplemental. We still do frequent checks and he wears the monitor during naps and at bed time. We were able to successfully wean him from the oxgyen during nap time several weeks ago but he still requires during deep sleep or his oxygen bounces back and forth to the 80's so he wears it every night. We are encouraged that he only needs it at night time and are hopeful that this means his lungs are continuing to heal. We take him for another chest xray and pulmonary appointment in a couple weeks and hope that maybe he won't require extra oxygen at night time soon. But as things go, we can definitely manage this. Alex might beg to differ as we struggle every night to put the tape on his face to hold the oxgyen in place so that his little fingers can't manage to "accidentally" put the prongs up on his forehead, or be chewed on by his new chompers. He definitely doesn't like the tape but he does love to play with the tubing any chance he gets (as does his brother).

Our medical appointments ebb and flow and during the next few weeks, its definitley flow time. We have upcoming appointments with nutrition, pulmonary, our 12 month pediatrician and shots, neurosurgery check up, ortho and spine xrays, kirch clinic (which is PT/OT, developmental pediatrician, urology all in the same day), dermatology, GI and audiology for a 12 month hearing check. Thats all just in the next four weeks. We are okay with all of this, just hopeful that all the appointments bring in positive news!!!

This Monday we are asking for prayers for Nicholas. He is having surgery (urology) that has been planned for months but now is suddenly before us. It is fairly minor, less than two hours in surgery and is outpatient. I shoudn't be so anxious about this. Out of everything the boys have already been through, this is way down on the list of worries. Together the boys have had a collective 6 surgeries in the last 12 months, this one making number 7. Nicholas is much older and bigger now so that makes me feel better in general. However I'm sure any parent understands having your baby go into any type of surgery and anesthesia brings with it some angst. I'll be happy to have one more behind us and hopefully only one more to go. (Alex also needs a much more in depth urological surgery, possibly two separate surgeries in the future but the urolgoist wants to plan this for more in the future).

Thats the big news for now. Because the best part of my posts are honestly just the babes themselves, here's a few to enjoy:

photos taken with my iphone (my camera has had another, ahem, accident which is unfortunately not been an uncommon occurence around my little ones in the last few months--my dad patiently tries to get it repaired each time but I am starting to wonder if I need a camera made out of indestructible rubber or something for the amount of times little hands find it and drop it on the hard wood floor and completely waterproof to guard against the all too familiar coffee and bottle spills.)

sporting some of their new duds....soooo handsome aren't they?

Nicholas loves hats, he will wear them inside the house and out
he even tries to take them off of his Daddy.

Alex however does not like hats
he won't usually keep one on even for a minute
maybe becasue he has to wear his helmet almost all day/night
he probably doesn't want anything on his sweet little head
for the little break time he gets of fresh air
he's warming up to the camera yet.......

Wednesday, May 5, 2010


We celebrated our boys first birthday this weekend. It started several days before the actual party. Mark really wanted to do something special for our boys. He decided months ago that he wanted us to make their first cake. Marks mom made all of the birthday cakes when he and his siblings were small and if she were still with us, I'm sure she would have loved to do it for the boys as well. It was in her honor that we tried our hand at it. We have never baked or decorated a cake before so this was a bit of a reach for us but we were determined.

I think we did okay....hopefully the boys will look back someday and appreciate it.

We were sooooo lucky to have a beautiful day, weather included so we brought the party outside....

boys were not sure what to make of the cake

but did enjoy getting their sweet little hands in it....

The little bit they had didn't stay put in thier bellies but I'm thinking next year will be a bigger hit!!

Presents, presents, presents. The boys were spoiled with clothes, toys......
Nicholas especially liked the paper and tags!!!

Can you read what Alex's shirt says??? sooo true!

Nicholas actually wasn't sleeping here but close to it,
both boys enjoyed cuddle time with family.

All in all it was just a fabulous day spent with family and friends and taking stock at how far
the boys have come in a year. We are so blessed!!!!!!

And here are a few of the boys just enjoying the fresh air and playing outside.

Just can't get enough of all of our baby blues!!!!

and here two little teeth are shared.....
Both boys are up to 5 teeth each now
both have the two on bottom and three on top
chomp, chomp!