36 weeks

The calendar says I will be experiencing increasing feelings of excitement and anxiety. If I were still pregnant, I would be 36 weeks now. Don't ask me why but I've never turned off my weekly pregnancy updates after the boys were born. I guess part of me wanted to remember our previous timeline and what they would be up to if they were still in the womb and compare to what they are doing now. Its strange that the doctors still refer to them that way as well. Every day at doctors rounds they introduce the boys as whatever gestation they would have been. Today was "36 weeks and 4 days gestation" as well as number of days old (58 today). My pregnancy calendar says they should be about six pounds now and that their kidneys are developed and that lungs continue to develop. In reality the boys are probably growing at a better rate in the world than how they were doing inside of me but they are still far from where they should be given the rocky road that they are on (just under four pounds right now). And even while that is still sooooo little, its so far from where they've started!! I know they will be "behind" for quite awhile but they are blazing their own trail. Somehow I need to figure out how to get on their timeline, instead of expecting them to be on ours!

They are now eight weeks old and still having difficulty with "eating". They are still not tolerating feedings very well and both have feeding tubes in. They've changed their formula and have added other medications to try to stimulate their intestines to get working but its a very slow process and we've stopped and started feedings about four times now so we are feeling a little restless. We know that they need to get eating in order to get bigger and stronger, to have a better chance at fighting off infections and to get off of all of the IV nutrition which has side effects on their systems, liver for instance when used long term.

We are very thankful that both our boys have turned the corner this week with infections and acting like themselves again. Nicholas will continue antibiotics for another week from his staph infection but is doing so much better. Doctors never did figure out what was going on with Alex's tummy but the xrays continue to look better so they will continue antibiotics as a precaution and go from there. Mark and I are finally getting to hold the boys again about once a day now that they are more stable and its so good to be able to cuddle and comfort them. I long for the day that we won't have these restrictions and then it will probably take a crane to pry them from our arms (or I suspect with some gentle pushing from family members who have been waiting patiently when we finally get them home)!

On this weeks agenda for the boys: Alex will be having an MRI on his hip tomorrow. It looks like he has a dislocated hip, not uncommon with babies with SB. He was probably born with this although I'm not sure why it wasn't picked up on earlier with the litany of tests he has had. It doesn't seem to be bothering him much but we'd like to know what needs to be done in the way of treatment for this, sooner rather than later so he doesn't end up in pain or impede whatever function he has in the future. We are still figuring out what he needs regarding his bladder and kidney issues. They are cathing him now every eight hours and may reduce to every twelve hours if he continues to do so well. They just want to make sure that his bladder continues to empty so it reduces the impact on his kidneys. But the great part is that right now he is doing most of the work himself. Neurosurgery also saw him a few days ago and says the shunt is working great for now. When they placed it, they stated that this temporary shunt might work for several weeks to several months and we are happy for every day he has a chance to get bigger before any more needed procedures!!!

Nicholas is doing very well off of the ventilator and getting over the infection. His biggest job right now is to really just tolerate the tube feedings and get bigger and stronger. But he has another hurdle this week ofcourse too. The doctors have been trying for the last several days to place a "psc" line--basically as I understand it an IV that goes deeper and lasts longer than a typical IV which can handle the IV nutrition and other medications that he needs throughout the day. Unfortunately they have been unsuccessful in getting one into a vein and my poor little guy is getting marked up. Today they even got an IV specialist to come in, they gave Nicholas some sedation and tried several spots, including his little neck but without avail. His veins are literally shot. They will try one more time tomorrow but have prepared us that they might need to resort to actually doing a surgical procedure where they have to actually cut him to get closer to a vein. Even as we get over some very big hurdles, the obstacles seem to be just lining up, lurking around the corner. I'm just trying to remind myself that they will not remember any of this and hopefully one day it will even be a distant memory for us!

We haven’t gotten a lot of pictures lately with the boys being in isolation, but here are a couple of previous ones to share…….

Mommy and Alex: I love this picture, it looks like he’s smiling and NO, I don’t care if it IS gas :)!!!

Alex with his favorite binky, I don’t think he minds that it takes up half of his face. And he’s not one to fuss over much EXCEPT if his binky falls away before he’s ready to be done with it.

Hey, who is that handsome guy with my Nicholas? hmmm...that may be my hubby, not sure. We only see eachother awake these days in the NICU so its hard to remember, ha,ha. He sure is pretty cute though, huh?

My other sweetie pie Nicholas lounging on the job.
Remember when this little hat used to practically fall to his shoulders?

Worry and wait...

Another long week in the NICU. Nicholas did end up having a staph infection that spread to his bloodstream. We are all too aware of how serious an infection like this could be for a very small baby so to say it has been a very tense time is to say the least. He has been treated with several very strong antibiotics and we are so thankful he is finally turning the corner. We knew he was feeling better when the nurses said that if they didn't try taking him off of the ventilator, he was going to pull it out himself. Apparently he was finally being the little one we have come to love so much and his feisty attitude and strong will has gotten him this far; I know it will continue to carry him through any obstacles that come his way. With Nicholas's and the nurses persistence, they took him off of the ventilator yesterday afternoon and he is doing great!!!! He will continue antibiotics now for another ten days to be sure the infection is gone.

Unfortunately while we could finally start breathing a sigh of relief over the last day or so with Nicholas, there are some new concerns with Alex. His belly had gotten quite large and he was acting very irritable and fussy, definitely not like him. They took some x-rays and blood work and ended up getting a lot of green bile out of his stomach. They stopped his feedings again and started him on antibiotics as well as a precaution. They continue to follow him closely but are not yet sure what is wrong. We also learned this week that he has severe kidney reflux, grade 4 on a scale of 5. We are waiting to speak with the specialist to find out what this means for him exactly. We are all too familiar with the "worry and wait" for more answers, so maybe soon we could find a new lesson to learn.

It is also bittersweet that we say good bye to two families we have grown very close to in the NICU. They each have a son who started life very early, at 28 weeks like our boys and even 26 weeks. The 26 weeker was even born the same day as our sons and it is a miracle that he is doing so well and will be discharged early next week. We are soooo happy for our new friends as they get ready to leave the NICU behind and start a new road. We know it was not a coincidence that we were all put together in the same NICU room sharing so many similarities and we will miss seeing them every day . We have already exchanged emails and phone numbers and have talked about how we will meet later this summer to celebrate when all of our boys are home.

Nicholas

Things can change on a dime. Nicholas has been doing so well off of both the Ventilator and even c-pap all week. We knew it wouldn't be just smooth sailing from here but we relished in a number of wonderful days and could just hope that they would continue without any big bumps anytime soon.

Unfortunately we went to see the boys yesterday and Nicholas was not himself. They noticed a large red puffy area on his arm where an IV was earlier in the day and we noticed right away he was not acting normally. He was quite lethargic even when being fussed with, changing diapers and drawing blood when the usual Nicholas would have a hand in "helping" or at least "chatting" with you during it. The rest of the day was spent with more tests, cultures, x-rays and even a spinal tap.

At this point they believe he is fighting a bacterial infection from his arm that hopefully has not spread in his blood stream. The spinal tap preliminary results at least came back negative so it looks like whatever infection he is fighting has not spread to his brain (Thank you God)! But he's also running a fever, has a lot of increased secretions in his airway and was really fighting for every breath and the doctors think this also looks like something Viral on top of everything else. They have cultured him for the flu, etc. He was put back on the ventilator which ofcourse broke mom and dad's heart to see him have to go back on that, even temporarily. We understand that his body needs a break and he needs the energy to fight the infection while the machine can help breathe for him. They also moved him to isolation to be extra cautious and to keep whatever this is contained as well as to minimize any other potential contaminants from him.

Our hearts are heavy but we are comforted knowing that Nicholas has the love and support and prayers of so many. We anxiously await for the rest of his test results and pray that this is just a bump in the road for him and that he will have a quick recovery and back on solid ground soon. We desperately wish our boys didn't have to fight so hard, but they are so strong and we are so unbelievably proud of them!

We are grateful for the continued prayers for both of our boys!

Beginning Anew

We are celebrating so many firsts this week, it truly feels like we are beginning anew. Parents of preemies have to be very patient for the things that parents of full term babies get all at once. It has been a long six and a half weeks but this week we have finally gotten an unobstructed view of our beautiful babies faces, even if for just a couple of blissful minutes. I was able to hold each of my boys in the same day and even Grandpa was able to sneak in a little holding for the first time this week. Mark and I also got our first family picture and got to sit side by side holding our boys for the very first time lastnight.

I also got to dress Nicholas for the first time yesterday (he is swimming even in the preemie clothes but still looks soooo cute). He's been maintaining his body temperature on his own for the first time and actually getting too warm all wrapped up in the incubator. There is talk that he will be graduating to a "big boy bed" very soon, possibly this week, which looks like just a regular hospital crib.

As any parent can attest to, it is the most incredible thing to watch your children begin to take notice of the world around them, including watching them really begin to focus on their mommy and daddy. It is impossible to put into words the joy that is filling our hearts, hopefully these pictures say it all.




Look closely (Nicholas in first outfit)



First family picture


Alex is not the only one sleeping better these days!

A Beautiful Day

Can't resist sharing more pictures from another beautiful day. Both boys continue to do very well off of the ventilator and they BOTH got to come out for holding so it doesn't get much better than that!!!! With the help of another skilled photographer (hehem, a.k.a Grandpa), we actually got some great shots of both boys awake which has been a rare sighting.

Grandpa just happened to be visiting when Mommy was busy holding Alex. At the same time the nurse was changing Nicholas who ended up creating a bit of a mess all over his bedding. Poor Grandpa had to be called to action to hold him while the nurse did the dirty job. This might send rumblings throughout the rest of the grandparent community, as this is the first time someone else has been able to hold them other than mommy and daddy....Usually only parents get to hold in the NICU so this was very special...



Mommy and Alex



Alex




Grandpa with Nicholas




Nicholas




Alex

Big Forward Steps

Last week we were feeling pretty beaten down. Stress was at an all time high as we watched our boys struggle through health issues while we were trying to keep our heads about us. I know our role is to love them, advocate for them where we can but so much is really out of our hands. And that is a good thing but also a scary thing. My mantra last week was really to remind myself often just to take a deep breath and let go a bit. We can white knuckle this journey all we want but ultimately we know we are not leading this ride. We have to trust no matter how rocky this road gets, our sons will come out of this however it is meant to be. For two people who like to plan, have control and over think things to death, this is a tough lesson but one I know we are meant to learn.

Alex came through his shunt surgery, again like a star. Prior to his surgery we were getting a little concerned that he was being a little too mellow and we were told people with fluid on their brain can be more lethargic, etc. He has shown us a little more personality since the surgery, being more alert at times and active and we absolutely love that. It truly is like Christmas every day in some ways, as we constantly see new things in them, and get more familiar with how they react in different situations.

Speaking of Christmas: this weekend was monumental in progress for both boys. I still can't believe everything that transpired. Saturday they took Nicholas off of the ventilator for a trial period to see how he would do on something called C-Pap. Its a step down from the ventilator and is much gentler on his lungs. He was finishing up his first course of steroids and the doctor wanted to be aggressive to see if this would be enough to get him off of the vent, or if he would need another course of steroids. The only way to know is to try. And I'm here reporting from the clouds that almost 36 hours later, he is still doing GREAT!!! He is taking all of his own breaths and the machine is just pushing oxygen through his nose to keep his lungs expanded. We have been warned that there is still a chance he is not quite ready to keep this effort up for good and he may require more steroids to keep this momentum but we are just so thrilled about this step. He by the way hated it at first and it looks even more cumbersome on his sweet little face but we know this is much better for him.

If that wasn't amazing enough, we walked in today as they were getting ready to take Alex off of the vent. We think he is actually more ready than his brother, didn't require the steroids but needed to wait to get a little bit further out from his surgery before trying. And shockingly just a few short hours after being on C-pap, he required so little on those settings, that they already graduated him another step down to something called "FP" (no idea yet what that stands for, I admit I wasn't paying attention to the conversation--I was simply intent on seeing my baby's full face for the first time ever and this time crying tears of sheer happiness). Pictures are included below, we got glimpses of both of their faces in between transitioning from the vent to the c-pap and the docs were incredible enough to let us take pictures so we could stare at them longer without all the "stuff."

We are feeling so blessed at their progress and hopefully this ride continues along this path for a good long while. Thank you to all of our friends and family who have been travelling this road with us and even those we do not know personally who continue to keep our boys in your thoughts and prayers. We are incredibly thankful!!!


Nicholas


Look Ma--no tubes (for a minute)


Nicholas-with c-pap



Alex off of vent



Alex only on "FP"

Day before

we thought we were happy then...

Illusion

Some people have commented that I seem to be "so strong" and really keeping things together. I'll let you in on a little secret though, Its mostly an illusion. you can smile when you need to, you can say "were just taking it a day at a time" when you just can't find it in you to talk about it one more time with one more person that day. You can walk around and manage to get through the day and remember very little of it at the end. I think its simple preservation at times like these that you can spend hours or days pretty much numb. People say "I don't know how you do it". But the simple answer is, you just do because you don't have a choice. You could do it too.

I think one of the toughest things is all the uncertainty. Its uncertainty that exaggerates the fear, and adds to the sheer exhaustion that is creeping up on us now. We are five weeks, two days into this confusing new world (not that I'm counting or anything). The days have been filled with the most incredible highs and terrifying lows, often in the same day. Just as we escape one diagnosis, we learn of another one they are concerned about. I am thankful they are being watched so closely, it helps me sleep at night. But it also adds to the constant fear of "what next?" We've lived another week full of x-rays, blood work, doctors consults. We barely have a chance to drink in the joy, relief of getting through one scare before learning of the next.

Our minds have obviously been on the next hurdle for Alex to get through, which is the surgery for his shunt. This will happen on Tuesday and will help drain the fluid that is building up in his brain, very common for children with spina bifida. But because of Alex's tiny size, they have to do something more temporary until his head grows larger which inevitably means at least another procedure for him in the future, likely several. The doctors are reassuring and say given everything he has already been through, this will really be a piece of cake. I'm having a hard time thinking of something going into my babies head with the same ease.

During this weekend, we've had several scares with both of the boys. They've each had trouble acclimating to feedings, which is literally a half teaspoons worth in their NG tubes, tubes that go right into their bellies. After several hours, the nurses check to see if they've digested any or all of the feeding before trying more, and this has been a very slow process. They have each taken turns doing okay and Mark and I get so excited, only to find out that the next time, none of it is digested and its just sitting in their little tummies. You would think that this should be just a little disappointing but just about each time they have "residuals" from their feeding, they have to have examinations and sometimes x-rays to make sure that there is not something more ominous going on with their stomachs. Preemies are susceptible to a very serious infection in their stomachs that can cause part of their bowel to die, they are not quite sure why this happens so they are just very cautious and check frequently when things are not moving through as they would hope. Ofcourse preemies in general have trouble initially with feeding and unfortunately their xrays might not look "great" for other reasons too so there is lots of angst while we wait for the next report. Luckily, the most recent tests have been negative for both of the boys so we breathe again.

The other major concern has been for Nicholas and respiratory problems. He is having a very difficult time coming down to lower settings on his ventilator and the doctors are starting to express their worries about this. Unfortunately the very thing that is keeping him alive and able to breathe is also causing scar tissue on his lungs with every breath the ventilator has to force in him. The more damaged his lungs become, the harder it will be for him to come off of the ventilator, etc. Eventually as babies grow, they usually can make enough new lung tissue that they can progress to lower settings but xrays already show Nicholas's lungs are very damaged and he is having a number of events where his oxygen levels still plummet even on these higher ventilator settings. They have diagnosed him with BPD (bronchopulmonary dysplasia)--something that he will eventually grow out of but could have long term consequences. They say its too soon to tell how severe his case will be or if he'll be able to get off of oxygen before going home, but they would like to consider using steroid treatment soon if things don't improve but they state that this treatment also brings with it its share of concerns and they don't use this treatment lightly.

In the same discussion, they let us know that Nicholas also has a hernia that will need surgical repair but they'd like to wait for him to get bigger before surgery. A part of his intestines are falling down into his groin area and may also be a reason he is having trouble passing food all the way through, so they have to manually manipulate this area for him. Apparently this is another "common" issue for very premature babies. For some reason, it was during the hernia discussion that I lost it, the tears just wouldn't stop. The poor doctor was right in the middle of telling me how simple the procedure would be but all I kept thinking of was, its just one more thing my child has to surmount, how many of these issues do our babies have to have? And how many more will we have to learn about? Isn't this the time where I can say "uncle"?

I know there are families who are going through worse than this, I feel the tension around me wherever I go in the hospital. I am grateful that my babies have a fighting chance, I really truly am so grateful. I smile when the doctors are rounding and I hear them say Nicholas and Alex's day of life..."36" because it was not that long ago that I wondered if we would get this far but some days the fear just bubbles up and I wonder "at what cost?" No one knows what long term consequences all of these treatments will have on them, just the sake that they were born so young, so small, let alone that we know they were already struggling before they ever came out. I straddle the line of being filled with such happiness and gratitude that they are here with us and tremendous worry and fear at what their lives will be like in the future. I guess when I think about it, any parent can probably relate to this at some level. I think it is just heightened for us right now because of the traumatic way they had to be brought into the world.

I found the following passage in a book today and it really resonates with where we are right now, and I think she describes this place more aptly than I could:

Its as if I am walking through my life and the path I am on and all I can see to my left contains all the blessings and wonderful possibilities for my family and our lives and our future. When I look to the right, I see a terrible cliff dropping off into disaster. The cliff was always there, is always there for everyone. Anything can happen. But before the losses we have experienced, I was able to concentrate on the path I was on and all that lies to the left. Since my experiences, I spend a lot more time conscious of and worrying about the abyss. I don't feel safe anymore, even though that safety was always at least potentially an illusion. I really miss the ability to live with that illusion.

Just pictures

Nicholas with Mommy


Alex is awake!!



Mommy and Nicholas under his cute blue cap

Daddy and Alex in their hats.

Great Moments

Its shocking in many ways that our boys are already a month old, its really indescribable how much love overflows from our hearts for them already. Its still incredibly surreal that they are here in this world, Mark and I look at eachother some nights and say "can you believe that we have two sons?" I'm not sure it will truly hit us until we can have them home.

In every other way this past month has been the longest month of our lives. Everyone says it will get easier, and that they will get stronger but some days its just hard to see beyond just the moment we are in. So we try to hold onto the really great moments to make it through the tougher ones. Some of the best moments have been to watch how peaceful they look when they are sleeping, or when they hold onto your finger so tightly, or when they open their eyes and you swear they are looking right at you (even though the "experts" tell you that they can't see yet--some things I'd prefer to stay naive about, thanks).

One of the best moments that I think both Mark and I can hold onto for a good long while is the feeling of each of us holding our sons tonight. Mark got to hold Nicholas while I got to hold Alex. It was the first time Mark has ever held Nicholas and the first time that we had both of our boys out of their incubators at the same time. It is one of the great things about having twins, we didn't have to fight over who got to hold the baby :). It was a very special night!!!!

Alex's sweet little hand

Alex

Nicholas's tiny toes

Alex holding Mommy's finger

Daddy holding Nicholas for the first time!