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.


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


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.


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,

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 :)