Wednesday, December 30, 2009

Great beginning

oooohhhh, someone sneaky stole a photo and caught Nicholas smiling. (thanks Allie!!!) Now we just have to work on his brother. Both boys absolutely LOVE the new exercauser. Alex was playing hard in it and just "resting" his eyes before mommy snapped this one. I swear they have a sixth sense when the camera comes out.....but the camera will persist, ha,ha!!!



We've had a very good week. It took the boys quite awhile to get back to where they were feeding wise and weight wise since their stomach bug but this week they seem to be back on track. For the last two weeks, we have been back to middle of the night feedings to get in extra calories and we are hoping that we will all be getting some more solid sleep soon.

We saw Pulmonary yesterday and it was a GREAT visit. Alex is back up to his weight from two weeks ago before he got sick (12 pounds, 12 ounces!!!) The doctor thinks he looks great. We unfortunately didn't get a weight on Nicholas because he's doing so well from a pulmonary standpoint, he's been discharged!!! But Nicholas has been downing his bottles again and feeling quite solid!!!

Anyway, back to Alex and the appt, The doctor discontinued THREE of his pulmonary medications. No more diuretics or nebulizer treatments. Each one was given TWICE a day so this is a big deal. He thinks he is likely outgrowing his medications so they that were probably not doing much for him anyway. Woohooo!!!!!! We'll just keep a close eye on him as he tapers off of these and hopefully they will be gone for good.

We also talked about his oxygen again. His oxygen saturation levels remains 99-100% on the tiny bit of oxygen he's on. The pulmonologist will send his office note to the cardiologist about this and we will follow up with his cardiologist in a few weeks. He will likely want to do another Echo (scan on his heart) before any decisions can be made to discontinue the oxygen but I am hopeful!!!

Alex also had a couple very rough nights getting used to sleeping in his helmet. Initially he'd wake up every half hour to hour to cry, which broke our heart. He was having a really hard time even moving his head in it initially and obviously couldn't get comfortable. He'd then wake up his brother which didn't help matters. We have tried working out some of the kinks in the crib to make him more comfortable and after a couple of more nights, we are relieved to say that he's beginning to sleeping much better! He is such a trooper!!

I think the illness and the new helmet has pushed Alex back a little bit more and we were getting a bit concerned that it might hamper him further. He could barely lift or turn his head and I think between the fatigue from having been sick and the helmet, I was worried how long it would take him before he was able to get back to his baseline, let alone have energy to try new stuff. Again, the "are we doing the right things by him?" came into mind again.

I was also referring to "the book"----you know the one that says what your baby "should" be doing about now. Its helpful to use as a guide but it can also stress you out as a parent if your baby is not doing literally EVERYTHING on the "supposed to" list by a certain time. (Heck the type A people even skip ahead and worry about the future stuff already too, not that I would happen to know about that, just something I've heard.....) So anyway, I was speaking to the therapist about my newfound concerns just today after reading the book. She reassured me and then went on with her visit with both boys. Mark unfortunately doesn't usually get to be around for the visits because work tends to get in the way so I went ahead and taped a couple small segments from the visit for him and thought some others might enjoy it too.


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Yep, they both rolled all the way over for the first time today!!!!! What are the odds of that? Both of them hitting that milestone in the very same day, heck in the very same hour???? Just incredible. I was just asking the boys therapist when she arrived today if she was concerned that they still hadn't rolled over fully yet "because the book says that they should be by about now......" ha,ha. Guess the boys just read that chapter and decided to go along with things! Its funny how you worry about something and then when they've accomplished it, you think, it was silly for me to worry, I know they have and will always do things in their own time. Why can't I just relax and enjoy the ride???

P.S. How do you like our new carpet? I've been wanting one for awhile now, you know a little more cushion on the hard wood floor. I was imagining something more neutral toned......but what we won't do for these handsome little boys!!

What a great beginning to the new year!
Hope you all have your own great beginning, Happy New year!!!!!!

Saturday, December 26, 2009

Babies first Christmas



We celebrated our first Christmas together as a family of four. The boys didn't really understand what all the fuss was about but Mommy and Daddy were excited. Daddy made a scrumptious breakfast and Mommy poured the mimosas and coffee. In between taking care of the boys, we opened up gifts together. Santa was oh sooo good to the boys. They had a mountain of gifts to open and admittedly fell asleep through lots of it so Mommy and Daddy had to take over. They received beautiful clothes, toys to play with, toys to cuddle with, and toys to watch run around all over the floor. We already and thankfully discovered most musical or talking toys are easier on the ears with some tape placed over the speakers!!!! ahhhhh much better!! We even received a case of diapers and wipes which was an awesome gift (thank you to my brother and sister in law!!!)

Mommy and Daddy agreed to not exchange this year (we already have two amazing gifts, what else could we possibly need?) However the boys had another idea. The boys surprised Daddy with a photo calendar for his work and they surprised Mommy with a beautiful heart necklace. Very sweet those boys!!!

The boys are not quite over their stomach bug and combined with a little bit of teething, it wasn't all fun and games yesterday, but it was still a beautiful day!!!!! Enjoy the photos.

We pinned the toy on Daddy, Alex really liked this. He is "breaking" in his helmet this week. We are up to wearing it eight hours a day at a time, and an hour break before putting it on again. It makes Alex pretty sweaty and he's still figuring out how to get comfy in it, especially while laying down and for naps. He is definitely fussing a lot more than we're used to but we are told babies tend to get used to them pretty quickly. He will be wearing it to bed for the first time tonight so we are a bit anxious about how sleeping will go.....but oh he even looks so adorable in it.


Why won't these fit?

You would never know Nicholas WAS smiling and playing with the wrapping paper....all until the camera came out.


Our first Christmas family photo


Our priceless gifts!!!

Thursday, December 24, 2009

Recovering

Our whole household is recovering from the stomach bug. The boys so sweetly shared it with us. Daddy got hit first and then I think I was the lucky one who got a slightly milder version of it, but enough to keep me down for the count for the day. The boys are doing better. The bug has not yet completely left them but its much, much better. Alex had lost several more ounces at last weight check and Nicholas was finally just stabilizing. They lost a lot of calories when they could only keep pedialyte down so no one is too concerned at this point by the weight loss. They will hopefully put it back on in the next week or two.

We are thankful that everyone is feeling better, and especially just in time for our first Christmas together with the boys!!!! Santa even came a little early and brought mommy her camera back and fixed so I'll get back to my alter ego--the paparazzi (sorry boys)-- Hope you enjoyed the break while it lasted :)

We are soooo looking forward to celebrating Christmas tomorrow. It will be just the four of us so it will be quiet (ha, ha) but happy. Sending our love and best wishes to all of our friends and family for a very Merry Christmas (and Happy Hanukkah)!


Sunday, December 20, 2009

I had to say it....

I had to say it, didn't I? What I thought was the ending of a so called "typical week" has turned out to not be the case. I was hoping that Nicholas's recent spitting up was a flare up in his reflux but it took a major turn yesterday and then his brother decided to give him company as well.

Both boys are throwing up after almost every bottle and lets just say filling up their diapers even more often with stuff that doesn't look, or smell right. We are getting concerned because they are only eating 2-3 ounces at best and we swear almost as much is coming right back out. sorry, I know, yuck. You're just reading it, imagine how the boys feel. They ofcourse are hanging in there like champs. They are sleeping more but still manage to give us sweet smiles when they are awake.

We took them to the pediatricians office this morning (thank God for weekend hours!!!!) Both boys have acute gastroenteritis or fancy word for stomach flu. Its going around in the community. Some of the strains have only lasted a couple of days, and others have lasted a week or more. There's no way of knowing which strain the boys have, we are just praying it leaves them soon. The biggest concern for these little peanuts is dehydration. We are told to only give them pedialyte for the next few bottles and slowly mix back their formula half and half after that and see how they handle it.

Nicholas has already lost 8 ounces just since Thursdays weigh in and Alex lost 3 ounces, we were shocked at how fast that happened. Our biggest goal is to keep them hydrated and keep them home. Its such a helpless feeling when your babies are sick, we'd be grateful for prayers for the boys to have a very speedy recovery.

Thanks!!!!

Friday, December 18, 2009

typical week

We are having a typical week, which is a good thing. No major events (knock on wood). We do think Nicholas is having a flare up of his reflux recently, hopefully nothing more. He spit up 5 times yesterday and quite a bit each time. He hasn't done that in several months but then again his reflux medications haven't been increased in that amount of time and his weight definitely has so he made just need an adjustment. We'll play out the weekend and see how he does.

Both boys continue to go back and forth with disinterest in eating and gnawing on their hands. We think its the beginning of teething but not sure.

We saw the pediatrician this week and the boys weights are good!!! Nicholas is 12 pounds!!!! Alex is 12 pounds, 11 ounces!!! We've had to fight pretty hard to get some of those calories in but they are really adding up! The pediatrician says they now look about the size of healthy two month olds and laughs...(they are "officially" going on eight months soon) but I'll just concentrate on the "healthy" part!!! She says we can start thinking about adding a small amount of cereal and fruits or veggies after the holidays so that is really exciting. I've already went out and bought the cereal, a couple cute little bowls and spoons. Its very surreal how fast they are growing up. I know that probably seems silly since they are still so little but the time sometimes feels like its going in warp speed. Its a strange place to be sitting in. A part of me feels so proud at how well they are changing and growing and I'm so happy to be a part of that and the other part wants them to stay small just a while longer to hold and cuddle. I'm sure thats a feeling all parents can relate to.

Hope everyone is having a wonderful holiday season with friends and family.
Will leave you with these cute pictures of the boys,
Blessings.


Nicholas in his bumbo seat, he's trying to make up his mind if he likes it or not. So far its more like "not" but we keep trying.


Look at those cheeks!!!!


you would never know how much he loves to smile because as soon as I get the camera out, he hides it. But every once in a while I can at least still get a smirk on camera.

here's one more, he is definitely our snuggler and just so sweet. He loves to cuddle up with a stuffed animal while he's falling asleep.


Alex is our very serious baby. He really studies and takes everything in. Here I think he is contemplating his attack on the dog rattle and maybe his friend the frog too. watch out.
Keep moving along Mom, nothing going on here...oh and yeah, this is how all the cool kids wear their oxygen. no worries.

I could say that this is his response to all the photos, and definitely could be but its also the way he puts himself to sleep these days. Eventually his hands fall away but its just too cute.
Our other cutie pie. He makes you work a little harder for his smiles but oh boy, when they come, watch out. They light up his whole face and our hearts!!!!
this was honestly NOT posed. They were playing next to eachother and this is how they fell asleep. Priceless. They still are not too aware of eachother yet. Nicholas seems to "see" his brother a little more and we catch him looking at him once in awhile but I don't think he really knows what to make of him yet. They still so far have more interest in their toys than eachother but hey, they have some really great toys :)

Thank you Erma for the outfits and the stuffed animals, they are just ADORABLE!!!!!!!!!!!

Happy Holidays everyone!!!!

Thursday, December 10, 2009

7 months!!!

Sorry its been awhile since I've updated. I've actually received several emails wondering if everything was okay since I hadn't written in a bit. Everything is fine, just our regular kind of busy with a little extra Christmas getting ready on top. And my camera is on the fritz (okay, well it had a run in with some formula and the formula won). I have a back up camera but we don't get along so well (I think I'm taking clear pictures, but the camera puts up the red hand that says "nuh uh" (really, literally a red hand appears) so thats the excuse for the lack of pictures too.

Okay, so grab that cup of coffee. ummm maybe a christmas cookie too....or two....while you catch up about the boys. I apologize in advance because when it comes to the boys, I'm hardly ever at a loss for words....

The boys are doing well. We continue to go back and forth with feeding issues. Same story, except the baby changes. During the last couple of weeks Nicholas is taking his bottles with vigor and quite easy to feed. He's chugging 5-6 ounces without stopping at times. Alex on the other hand is fighting us every step of the way after about two ounces. He'd rather chat or play or lately try to get both of his fists in his mouth. I know well meaning friends and family say not to stress, that babies will eat when they are hungry but with our little ones it seems to not be the case. Alex can sleep all night long and wake up and still only want 2-3 ounces, then he won't have a wet diaper. His doctor gave us a guideline of roughly how many ounces the boys should be getting each day and Alex is no where near that during his "bad" days which unfortunately has been for about the last two weeks.

I'm not sure if this is partly a preemie thing or not but it does seem like we are constantly fighting one of the boys or the other at any given time to get enough ounces in them. I've talked with other preemie parents and it does seem to be a larger issue in general for many of us. I am wondering if the boys are starting to teethe and that may be part of the problem, Alex especially is constantly shoving his little hands in his mouth to chew lately. The last few days we are really trying everything to encourage him to eat better, such as distraction (sorry Mark but he really DOES love when I sing him country), either that or maybe he just keeps drinking to try to tune me out...hmmmm....anyway...doesn't matter the reason I guess. We're also trying a faster flow bottle so he doesn't have to work as hard but still get more in him and that seems to be working a bit as well.

The good news is that the boys are closely monitored for their weights and vital signs every week with home care nursing visits and they are both still gaining. Not as rigorous as we'd like but not losing ground either. I think the extra high calorie formula that they are still on is giving us a safeguard. Nicholas is 11 pounds, 6 ounces and his brother for now still does have the lead at 12 pounds, one ounce! I just can't believe they are 7 months old now. We look back at their first pictures and we are reminded again how incredibly far they've come.

The big news this week is Alex had his scan and measurements completed for his molding helmet. This is literally a helmet that he will wear to help re-shape his head. Because of that "bubble" that he had for so long, he really only preferred to lay on the other side of his head and this caused severe flattening on one side of his head and almost comes to a point in the back. His forehead is also pushed too forward due to this. Coming into the world three months early with his head still so malleable also didn't help. We are told that babies tolerate the helmet very well, and they have to wear it really 23 hours a day (one hour off to bathe, wash the helmet, etc.) We are told that it will be for a minimum of three months, possibly up to six months depending on how things go.

We were already pretty anxious about the thought of Alex needing this, but then came the discussion of his shunt and then my anxiety went way up. They were concerned with the fluid around Alex's shunt. Apparently they have worked with many babies with shunts but almost never see the fluid build up like Alex has. This gave me a lot of angst because I've already worried about this quite a bit. We've taken Alex back to his neurosurgeon three times since his new shunt was placed and thats our number one question to him every time, IS the shunt working properly, should we be concerned about the fluid, etc. He reassures us each time that it is doing what it needs to do just fine and that the reason the extra fluid is there is just because Alex had the temporary shunt first, which basically created another "space" for fluid to move around. He believes this will lessen as Alex grows and is not at all concerned about it.

Back to the helmet: They explained to us that NO part of the helmet can press down on the shunt track or it may cause complications with the shunt (basically blocking it off and the shunt not being able to work effectively). They have no problem carving out the back of the helmet along the shunt to give it the space needed, the issue becomes if the fluid varies at all. How do we know when they make the helmet if the fluid is at its maximum, making sure we give it enough space? We THINK that the fluid is relatively stable, but what if it changes? They stated that initially we will only let him wear the helmet for an hour, and then off for an hour to check for any redness or issues, and slowly work up. They also stressed that when the helmet arrives (in about two weeks) if they have ANY concerns about having him being able to wear it safely with the shunt, they will not give him it. Ofcourse then they said on a scale of 1-10 in head severity, Alex is about 7-8. So now I'm not sure what I'm more stressed about at this point, whether he gets the helmet, or whether he doesn't. ugh.

When Mark and I struggle with these "oh my gosh, are we doing the right thing(s) for our boys, are we advocating for the right things, are we advocating hard enough, what should we ease up on, what will THEY care about in the future and wish we would have done for them now?" All the things parents struggle with really, well these are the moments that I have to take myself down a little and remind myself we are not in this alone; God is lining up people in our lives like he always has that help guide us. A very pertinent example: I met a mom a couple months ago at an outing for moms with children with health issues, and special needs and I"m grateful that we still keep in touch. Well, it just so happens that she has a beautiful daughter who also has a shunt and also needed a helmet. Except when her helmet came in, they could not get it to fit where they were comfortable that it wouldn't impact the shunt. Our childrens stories are not exactly the same but long story short, she ended up needing to get a second opinion for her daughter's shunt in Syracuse and now has a plan to get the shunt replaced, and a new helmet. I don't think its a coincidence that I met this mom (or the other moms that night) and I keep that information tucked in the back of my mind. I will certainly take Alex to Syracuse (or wherever) to get a second opinion should we need to, and can even call on my friend to get started on a name should it come to that.

Right now we are comforted by the fact that besides the eating issues, he is very well. He is such a happy baby, babbling, smiling, alert, reaching for toys. He is not displaying any issues that would suggest his shunt is not working properly (these include extreme tiredness, throwing up, irritability). Otherwise we would not hesitate to push in a different direction. So for now, we will continue to take it one day at a time.

The other good news is that our babies are a little less drugged up!!! :) Both boys are off of one of their GI medications (reglan, which is the one that the FDA had black boxed and I was very stressed about). This was a medicine we had been giving to both boys every six hours since they were in the NICU and with our GI doctor's help, we weaned away one dose every week and now they are both off!!!! Its been two weeks now since they had their last dose and I am very excited and relieved about this!!!!

Also excellent news: We made a trip to the pulmonologist this week and Nicholas was discharged from the clinic!!!!! He is doing excellent and he is now off of his last pulmonary medication (another 4 times a day less medicine) and is doing great!!!! They said they ofcourse love to see him but don't want to see him anymore, ha,ha. They cautioned us to keep doing what we have been to keep the boys protected from colds/flus this winter to protect his lungs because that is when babies tend to have to go back on the meds and monitoring with them but knock on wood!!!! We reminded them ofcourse that as long as Alex has to keep coming, its a two for one deal with them, ha,ha.



Mark and I couldn't resist these shirts awhile back and just recently remembered we had them. This does bring up the question we get asked a lot. Are they identical? We go back and forth about this. During my pregnancy, the doctors stated they were identical, because they were sharing the same placenta instead of having two separate ones. However when we asked further, the specialist did say that there was a small chance that they started out having two placentas and they could have fused together making it look like only one on the ultrasounds. People are surprised to hear that we are still not entirely sure. The only way to be 100% sure is to pay several hundred dollars for a genetic test.

To be honest, we kind of like wondering still, and watching how they grow and change. Whether they continue to grow more alike or end up having many differences, their our babies, they certainly are and look like brothers. For now thats all we really feel the need to know :)

Sunday, November 29, 2009

Thanksgiving


We've always had so much to be thankful for: wonderful family and friends, our health, eachother, a warm home, the list goes on and on.....and yet these last few years we couldn't help but feel something was deeply missing. We knew what it was ofcourse, it just took a lot of time, tears, prayers and love. These prayers were answered last year, and it was a year ago at Thanksgiving dinner that we shared the news with our family. At that time we thought we'd be becoming a family of three and we were in the clouds. I would have never dared to even dream that God had an even better idea.

So at this Thanksgiving we are again counting our blessings plus two! This Thanksgiving we are more sleep deprived, more frazzled, certainly less put together than at this time last year but also never happier!!!! (and thanks to our family, we were more than sufficiently fed and we guiltily didn't even have to lift a finger this time--Big thanks to Grandma and Grandpa Johns, Aunt Becky and Sophie for a wonderful dinner!!!!)

Ofcourse can't leave you without sharing photos of our two most favorite people and treasured gifts!!!!

Happy, content Nicholas and oh such a cutie!!!


Gorgeous Alex who rewarded us with a semi-smile and happy for the brief time he was allowed to be without those pesky plastic things in his nose to pose for Christmas card pictures!

Thursday, November 19, 2009

Too early for Christmas?


It has been another beautiful week. I hope saying that doesn't jinx it. The boys are fabulous. We had an appointment with their pediatrician this week and it was a great visit, nothing but positive news. Ofcourse for little tiny babies who began at just a pound and a half, we are always vigilant about their growth, probably obsessively so. They are obviously still quite a ways from being on the charts for their age, even for their adjusted age but they continue on their own curve and the doctor is pleased with this. We went over a few concerns, because frankly even when things are going well, we can always seem to find some questions or concerns we have but really everything is going well. I think this is one of the first appts. that we didn't have or learn about a new health issue, another test, or another medication....Is it too early for Christmas? This is really such a gift!!

Oh, okay sooooo, drum roll please..........

Nicholas broke the 10 pound mark!!!!! He is now 10 pounds, 3 ounces!!!! If that wasn't awesome enough, Alex is 11 pounds, 1 ounce. It just thrills us: DOUBLE DIGITS!!!! I think we cling to these numbers because its a concrete way of knowing that they really ARE doing well. Is it too early for Christmas?

Nicholas is his chatty self, giving us those filling up his whole face smiles and throaty giggles. Alex is giving us bigger grins and just starting to share his giggles with us too, its beautiful!!! They both reach out and touch our faces, grab at their toys, and follow us with their eyes wherever we are in the room. Its amazing that these two tiny beings have the capacity to make us feel like we are the entire world....and they certainly are ours. Amazing gifts!

Mark and I have both witnessed a number of times this week while Alex is napping, one of his legs extending and lifting completely off the floor, completely!!!! He's done it several times in a row so we are both sure we are not imagining it. He also seems to tense his legs and his butt at times during diaper changes and can flex his feet a little as well. We don't know what this means as far as the big picture, it doesn't really matter. This is the child that the "experts" warned us would likely be paralyzed from the waist down and maybe not even be able to move his upper body. God obviously has a different plan. Whatever comes of it in the future, we know we have been blessed!!!!

Recently we've even had a couple of nights here and there where we've gotten a six hour block of sleep. Oh to have some more of those, so I ask, is it too early for Christmas?

A couple weeks ago I received an unexpected gift in the mail. You know how nice it is to receive a card, even a hand written note in the mail these days? Really anything other than a bill or junk mail is pretty nice. Well, I got this package and when I opened it, it was wrapped in x-mas paper. I debated whether I was meant to open it yet or not, but then I figured if the sender knew me at all, they knew I couldn't possibly wait until Christmas before I opened it. So I did. They were the most beautiful hand made Christmas stockings I've ever seen. Even more precious were the names handcrafted in them: our sons with the date of their first Christmas. A most beautiful gift, I was so touched that someone had the thought to do this, let alone spend the time. My next thought was, is it too early to hang them? Is it ever really too early for Christmas?

Its funny that I'm feeling this way this year. Honestly in recent years I've been a little bah humbug around the holidays. It certainly is wayyyyy too commercialized and there is way too much time and stress spent on trying to have the perfect meal, figure out how you will manage to see everyone, where you will go, who you will invite to your house, find the perfect gifts, and not nearly enough time spent just being with our family and friends and letting them know what they mean to us. I really haven't looked forward to the holidays in quite some time.

Everyone says that it changes when you have kids. I just had no idea that I would feel this way already. The boys will certainly not understand yet that this will be a special time of year yet I'm already excited about having our first Christmas. After all of these years of dreaming, we finally have our family. What a blessing, what gifts we have been given. It sure already feels like Christmas to me!!!




Happy Nicholas
Sweet, serious Nicholas
Thoughtful Alex
Alex wondering how I like his new headband.....
Daddy and Alex sharing a laugh, just priceless!!!


Here are the boys first stockings. Thank you sooo much Debbie, we LOVE them. And the boys, well I'm sure they can't wait for us to fill them!!!


Their first ornament
Reads: "two peas in a pod"

Thursday, November 12, 2009

The unpaved road

Nicholas caught flirting with his physical therapist.


Alex makes us work for his smiles and plays shy as soon as we get the camera out but thats okay, we love his serious, thoughtful face too!!!

After my last post, I am relieved to report a new peace has settled into my heart and our lives this week.

Several events have helped this, and I believe ofcourse that these events were not just incidental but thankful for the calm whatever the cause. Anyway, getting back to our week: Since the boys technically turned 6 months last week and are thought to be very high risk, they were able to be vaccinated for the regular flu, H1N1 flu, AND RSV (a specific respiratory virus that affects preemies and commonly results in many hospitalizations). We are soooo grateful for our doctors and nurses who made certain that the boys were listed as high priority as we know that two of these vaccinations are quite difficult to come by. The RSV vaccine in particular is $1500 PER shot and needs to be given once EVERY month from now through April. It takes a lot of lobbying with the insurance company given the expense but is so important since the boys missed out on all of the immunity usually provided to babies in the 3rd trimester. We are thankful that they have been approved for all of these!

Having said that, we are doing our part to try and keep the boys protected. We are officially in "lock-down" now that the cold/flu season is in full swing. We keep the boys away from grocery stores, malls, even church--anywhere where there is a mass of people and unfortuantely with it lots of opportunities for illness. Its easier to protect the boys by having visitors on our terms, where people are sure to wash hands/purell before touching them or things that the boys touch. We desperately wish we could share them with many more and "show" them off as all new parents do. The isolation is already starting to creep in and its only the beginning of the season but I remind myself its such a small price to pay in order to do our best to keep them healthy and hopefully out of the hospital. Next year hopefully they will have built up some immunity and grown healthier lung tissue so it won't be so detrimental if they do end up with a cold but for now we are settling in but I digress...

The other great news this week was from Nicholas's surgeon. He evaluated Nicholas and what we thought were his hernias recurring are not. Instead they are something called "hydroceles" where its not the intestines falling down but simply fluid pockets. The surgeon said this can happen after surgery and should have no negative impact on Nicholas, they are not sure why they occur but they tend to resolve on their own within 6 months to a year with no intervention. NO INTERVENTION, oh how I love hearing that!!!!!!!!

Ofcourse this reminds me that there is a lesson here I am supposed to be learning and yet continue to fail to do so. I always get way ahead of myself. I had myself all tied up in knots last week thinking of yet another surgery for my baby, sure that it would come to that, and thinking of going through all of that again when we were hardly two weeks out from Alex's recent surgery and for what?? Needless waste of energy, anxiety and sleep. I don't know why I do this to myself, I've certainly had many of these life lessons and yet I still have not learned to trust that things tend to have a way of working out even when we can't see it. My tendency has always been to try to "prepare" myself for the worst as if that helps ease my burden down the road but inevitably the road goes off in a direction I could have not foreseen anyway. (This also reminds of of something I had written for the church bulletin just after learning I was pregnant with the twins but before I learned of Alex's Spina Bifida). Well, maybe I will share that in another post. And maybe, just maybe one of these days I will learn from these lessons.....

Onto the boys: they are growing and changing by the day, by the minute. As any parent can attest to, it is simply thrilling to watch your children discover themselves and the world around them. When I am not smothering them with cuddles and kisses, I sit back and find myself amazed as I watch them discover their hands for the first time, as if they are seeing them for the first time, or reaching out to touch a rattle and surprising themselves when it moves or makes a noise, or the light that is in their eyes when they see us come into view, oh what a feeling.

We've learned Alex has quite an arm, its really shocking how hard he can whack at those toys, maybe he doesn't like these and he's really trying to tell us he would like new ones, we're not sure. He's also chatting so much more these days, and rewarding us with his smile a little more all the time. Nicholas is in constant movement, beginning to roll and turning himself in a complete 180 from wherever we put him. You can not help but laugh when he gives you a giggle or sticks out his tongue and is absolutely delighted with himself when he gets our reaction. They are both discovering how to put their hands in their mouth and talking to themselves at the same time, it is so sweet listening to their "conversations". I know these things probably sound so simple and yet somehow we feel such a sense of pride as we witness them accomplish these new tasks.

I had just found out a year ago today that I was pregnant. Wow. Sometimes I can't believe that this journey really just began only a year ago, with all that we have experienced in this year. I think back to those days, the pregnancy, the exhilaration, the dreams, and then the anxiety and fear as things twisted into something quite stressful and complicated. I think back to the "experts" information, weekly ultrasounds, specialists, hospital bed rest, the emergency birth three months too soon, the NICU, the life support for the first two months; surgeries, infections, all the tubes, wires.....But then I remember the dedicated doctors and nurses, all the prayers and support that enveloped us. I remember our babies little teeny tiny hands that were able to grip our finger almost from the very beginning, as if they already knew us, and were trying to reassure us, how fragile they seemed yet how hard they fought. I look at them playing in our living room, seemingly without a care in the world, as if none of that ever happened. Miraculous. No other description is possible.

We may have some challenges here and there, and we are certainly not on any road I could have ever predicted. But it is a beautiful road nonetheless, and where once I could have only seen an unpaved road riddled with hills, rocks, and cliffs that seem to come out of nowhere; now I can see all the vibrant wildflowers along this road, patches of green grass in between the rocks. I feel the breeze on my face, the sun on our backs as it comes out from behind the clouds, and feel the gentle squeeze of my husbands hand in mine as we look on at our little ones, our hearts bursting with love and I know we have been amazingly loved and blessed. I also know there will likely be more hills and rough roads ahead, but looking around, the view is pretty incredible from here!

Thursday, November 5, 2009

Six months

Its sooo hard to choose which pictures to post when they are all sooooo cute, but here's a few of my favorites.....

Alex and beginning of a smile.....


Pensive Alex

Please Mom, just no more photos

shhhh, don't tell him I took another.....just couldn't resist


Nicholas looking very guilty....
Happy, Happy Nicholas




Its hard to fathom that the boys are now six months this week. SIX months. Incredible. They've been home for almost three months and our lives are simply unrecognizable in a challenging but also beautiful way.

Things are going overall quite well. Alex is still doing well post shunt surgery with his newfound energy, voice and appetite and we are loving that. In the last week we have visited Pulmonary, GI, cardiology, Ortho and neurosurgery for follow up. Alex will likely be keeping his oxygen on for awhile because it is thought to help his lungs (obviously) and his heart to not have to work so hard. His oxygen levels have been very stable on the small dose he is on so we actually got permission to disconnect the actual monitor during the day while I am with him and just use that at night primarily. This is actually a big deal since the monitor can create quite a bit of extra stress, and tends to set off the alarm just when the actual sensor gets loose or he moves too much, and not for any kind of emergency (even though it gets the adrenaline rushing when we hear it). He has not needed an increase in his oxygen in quite some time which is great. We obviously know the signs to watch out for during the day if there is an issue, and ofcourse we "plug him in" every night so we can hear the alarm if anything God forbid happens at night.

I actually thought I'd have a harder time being without the monitor to look at anytime I wanted to double check his numbers but its really more of a relief not to have it 24/7. Our comfort level is much better in this regard and shows now that we've moved him back upstairs to his room with his brother, so now Mark and I can both sleep in our room as well. (When Alex came home initially on oxygen and monitoring in September, we were taking turns sleeping with him downstairs so one of us could always be right next to him just in case).

The other news for Alex is his "bump" is coming back. Mark and I were surprised and confused when the new flat spot on the side of his head started filling back up this week, along with some other swelling near his catheter site on the back of his head. The neurosurgeon was able to reassure us that nothing terrible is happening but apparently the site where the previous shunt was placed must still be somewhat open and the fluid is just finding its way back there. We are not sure how much it will re-fill but if it becomes too large again, the only course of action is another surgery to try to close that site. Mark and I were very disappointed to hear this and hope that it won't come to that.

Due to the fact that Alex has had that bubble for so long, it caused him to lay on the other side of his head all of these months, resulting in very tight neck muscles and a misshapen head on the other side. Neurosurgery wants to see him back in three weeks and then is recommending that he get fitted with a special helmet to re-shape his head. Apparently this is something that he will need to wear for 23 hours a day for several months. He said the extra fluid and shunt site make this more challenging and might require him to wear the helmet until he's about a year old but time will tell. Wearing this to he's about a year old? That seems soooo long.

With everything else that he has been through, this is the least of our worries but still saddens me for some reason. I worry about him being uncomfortable, having to wear something on his head all day/night for months on end. In my heart I think, "hasn't he been through enough already, can we give him a break already?" I know he will likely sail through this challenge like he has every other one before him. But I can't stop thinking about how much he hates the oxygen in his nose and how he gets agitated about it and trys to get it out, and now thinking about something on his head, It just feels like there is one thing after another for him and it makes my heart heavy.

In other news Nicholas has taken a little step back with the feeding issues and we've been in touch with GI several times this week. We tried decreasing one of his GI medications and even one less dose seemed to prove havoc. His appetite is back down, we've had to try numerous remedies (none of them pleasant) to help him "go" and he has lost several ounces from last weeks weight. It is a very powerless feeling when your baby doesnt' want to eat and when you know they are not getting enough to grow, or even maintain their weight. I have to say the constant feeding issues that we've had taking turns with either of the twins all of these months is one of the most chronic stressors we face. I used to long for the day that I could feed them both at the same time, now I just long for the day that I can take out a bottle and not feel like I have to fight with one of them just to take the minimum for their health.

Lastly it looks like Nicholas's hernia is back and likely contributing to or the result of some of the issues above. We spoke with his doctor tonight and they said its not "common" to have them return after surgery but apparently it can happen. The concern is that the part of the bowel that has fallen down could get "stuck" and result in a partial or full obstruction of the bowel so she says we are likely looking at another surgery for him very soon to correct this. We will be consulting with the surgeon again asap. In my head I'm adding up the surgeries that my babies have gone through in their very short lives (4 surgeries for Alex, 2 already for Nicholas) and praying for some peaceful time ahead.

I guess it shows that I'm feeling a little weary tonight. I'm sure with some sleep, a "nap" as it may be and some prayers, I'll be feeling more upbeat tomorrow but I thank you for "sitting" with me when I'm not always at my best, and sending us your love and support. I admit that I often feel like I "should" only write when I'm feeling optimistic and strong, yet I think it helps sometimes to have an outlet the moments that I'm feeling anything but so thank you for that (not that you really had a choice, huh? but I guess you could just stop reading sooooo.....I guess if you ARE still reading, THANK YOU!

(I'm going to turn in now but will add some updated pics of the boys to the post tomorrow because really, isn't that the best part?)

Sunday, November 1, 2009

First Halloween

Here is a very serious penguin and monkey.
They learned there would be no candy for them this year....
but still so adorable!








Thursday, October 29, 2009

Accomplishment


Life is good! Ever since we came home with Alex last week from his surgery, I've had a renewed sense of gratitude. I'm still exhausted, busy, sometimes want to tear my hair out when I have two babies who need comforting at the same time and my hands don't seem big enough, but incredibly grateful for all of our day to day challenges.

Being in the NICU last week jostled loose a lot of memories I hurried to lose. Three months of memories. Not all bad ones, but too many terrifying, uncertain ones. I remember thinking then that I would give anything to be one of the ones who gets to be home with their little ones, sleep deprived, not remembering the last shower I took, or the last hot meal I ate that was actually still hot, just to know that my babies would come home---and my prayers (along with the prayers from so many others) were answered!!!!

So here I am. I have to admit that before I became a parent, I was one of those "non" parents who thought they knew what it was like, knew what kind of mom I was going to be, how I was going to discipline, keep my home, and in general have all the answers. HA! I thought a psychology or social work degree, and a few years of taking care of infants, even colicky ones, along with the bottomless desire to be a mom would just certainly prepare me for what was in store. Secretly, I even thought being home all day with my children would be like a school vacation, in the back of my head I was planning all the "projects" I would finally get to tackle around the house while the babes were sleeping.....HA,HA, and HA. All of the other already parents are probably laughing quite hard now.

I do think having two babies at the same time is a bit more challenging than perhaps one would have been, certainly more sleep depriving at this stage but I"m not really certain that any parent having even one baby, with a toddler or older children in tow would have it any easier. Some days I breathe a sigh of relief getting one baby diapered, fed, med and down to sleep and its like the other one has sonar and gets up for their turn to do it all over again. Ofcourse thats better than the days they both need things at the same time and well I'm sure you can imagine the "music" in the house then. But at least for now they stay where I put them and I don't have the demands of a toddler or older child with boundless energy and questions. And all the families with more than two children? I obviously can't even fathom....I'm just in awe of you.

Right now days are still a bit more complex with weekly doctors appts, nursing visits, therapy, oxygen, monitoring, and many medicines but slowly this is already getting more manageable and as much as I hate that my boys still need all of this "stuff", I'm sooooo grateful that these things were invented!

Lately I've been pondering about my "productivity". I remember what a "successful" day used to feel like; I used to feel accomplished at my work when I could check off a task, complete an assessment, produce a discharge plan to a family, or lead a meeting. That is how I knew I was "productive". Its really hard to switch off of that mode now that I am home. Mark gets home at the end of the day and sometimes I look around and think "what DID I accomplish today?" I mean I guess I could add up all the diapers I change in a day between the boys (about 16-20), or bottles I prepared and gave (12-14), or medications I suspense (34 doses in a day). And maybe it shouldn't, but putting even these figures to paper DO give me some validation of where the day goes but I am still certain these are not the measurements that are important at the end of the day.

As I'm sure many of you who are reading this have already learned, it is the things that you can't really quantify that really add up to something truly meaningful. I guess now I need to consider a successful day to be at the end of the day if my children are fed, dry, warm, safe and hopefully feel loved. It is the contented coos and "conversations" had, the comfort provided in holding, witnessing them discover themselves, the smile that goes all the way up to their eyes and just lights up my heart. I could live my whole life through but these children, they are the best accomplishment Mark and I will have ever contributed to this world!!!!

Okay, well if you're still with me here, you must really want to hear (and see ofcourse) how the boys are actually doing, but thanks for listening to my ramblings in the meantime!

Alex is doing FABULOUS!!!!! It is almost like someone flipped a switch. By day 4 after surgery, he started eating twice his usual and in about half the time. He is more animated, more talkative, even cries more. He's the Alex we remember from more than a month ago and better. We are thrilled and thankful!!!!! Now Nicholas doesn't have the market cornered on "feistyness" in this house.

Alex's new favorite pasttime is exploring all the ways an oxygen canula can go (and you thought it was just one). Oh, also he tipped the scale today at exactly TEN pounds!!!!!

Look closely, his favorite way to wear the oxygen


2nd favorite way and his daddy would probably translate as "hmmm, tastes a bit nutty".

This one needs the magnifier and is close to the traditional way of wearing, except this must be the new fad, its one piece of the canula in the nose, and one piece out.
Alex thinks this is the boring way and simply thinks we need to have a more open mind about the fashion.....


Nicholas is practicing his movie star smile these days but he's a bit of a perfectionist because all of a sudden he freezes as soon as he sees the camera and just stares stone faced. argh. He has even given his first giggle and its the cutest thing to hear ofcourse! Nicholas is also catching up quick to big brother at 9 pounds, 12 ounces, Watch out Alex!!!




okay its a bit blurry mom, I'm fast, try to keep up!

This entertaining business is ALOT of work....

stay tuned, there will be Halloween pics coming along soon!!!!!