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!!!!!

Home

Alex happy to be resting at home!!!!

Our family is back together again!!!! It feels like its been a very long week with worries and little sleep but as always, Our family (and prayers) have brought us through.

Alex is catching up on some rest and recovering from it all very well. He cries more often than we are used to and it breaks our hearts but he is pretty easily consoled with a little tylenol and holding. He has a new incision on the top of his head, a little closer to his forehead and a new one on the very back of his head vertically. (Mark would like to post pictures of these specifically but I am not so inclined--Ugh, boys, whatever will I do? ha,ha. )

Alex also has about an inch incision on his tummy above his belly button where they needed to position the tubing. He is not able to put pressure on the side of his head that used to be his bubble which means no tummy time for two weeks since thats the only way he tends to lay his head. We also can not do regular tub baths for two weeks since none of the incisions can get wet. Otherwise its business as usual :)

We have not yet noticed any changes in his drive or desire to feed, am hoping maybe that will still come. Neurosurgeon thinks it should have improved by now if it was fluid and pressure related but I'm well aware that all things related to our boys go far deeper than what "science" can explain.

Peds unit

It was a looooong night but already the morning makes it more than worth it. I came in at midnight to stay with Alex who was moved to the regular pediatric unit overnight. The unit is wonderful but the staffing is far less than the nicu. Sleep was not to be had for either Alex or I with hourly checks but ofcourse Alex is cheerier than his mom.

What DOES make his mom happy is that Alex started peeing around the catheter so they already took it out and he's back to doing this on his own. Can you hear our sigh of relief from here?

It gets better!!! Neurosurgery came in this morning And said after they take the bandages off today, he is free to come home!!!!! Can't wait to post pics from home later today.


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Nicu (and updates)

WERE BAAACK!
God is sooooo good to us! Alex is resting Very comfortably in a very familiar place: the nicu. Turns out the pediatric intensive care unit was full so Alex gets to go back to his old "home". We've already had plenty of our old friends (docs and nurses from before) come see us so it's very comforting. Alex came off of the ventilator without any issues and will be eating again tonight.

We are so thankful to all the thoughts and prayers, we feel them working!!!

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Tuesday (who the heck knows the date):

Alex did well overnight. We have encountered a little "bump" in the road as is life. He is not urinating and they have so far been unable to cathertize him due to his hypospadius. Unfortunately this happened a couple months ago as well after surgery when he was in the NICU and it did take a few days to get things going again. He is having a cat scan this morning for follow up of his shunt surgery, and now an ultrasound for his bladder and kidneys. I expect his urologist to see him as well and am trying not to go a million steps ahead of myself but ofcourse always the worrier and the planner (and no they don't make a good pair) but am thinking of the NICU nurses and Fellow can't figure out how to cath him, how the heck am I going to figure it out when its time. Obviously its too soon to know if this is going to be an issue that we have to deal with when brinigng him home, but due to the spina bifida, we always knew it was likely this was coming. We just hoped at least that it would be after his corrective surgery in the spring/summer when it will be easier. Again, 10 steps ahead as always.

We are soooo thankful he's in the best of hands with our friends at the NICU, but it sure does bring back alot of memories sitting with him there again.....

Thanks again for all the prayers. I have better technology this admission than previous times so I will be able to give updates from the hospital on my phone as news comes for anyone interested.

Blessings.

Tuesday night:

Alex had a good day overall. I was shocked and worried when I first saw him this morning, his belly was HUGE and he still was not peeing. They had done the ultrasound but everyone was waiting for results before doing anything even though to me, it was clear what needed to be done to help matters. Long story short we were able to get several people from urology and after many more attempts, they were finally able to get in a catheter. Deep breath finally by mom. Alex as always was a champ, and kept enjoying his sugar water and pacifier and didn't seem half as bothered as his mommy by all the prodding, (which ofcourse brings me more concern but we won't go there right now).

Good news is the catheter is in and doing its job and hopefully very soon can be taken out to see if he can go back to doing this for himself. The unofficial report back from the ultrasound is that the bladder was indeed over-full but it was not backing up into the kidneys like it had done last time this happened so that was very good news. This also seems to confirm that this had only been happening very recently and so we should be able to assume all of this is very temporary.

We got a chance to see many more of our NICU friends again today who have been taking such wonderful care of our little one. Well he's actually not so little now, he's like the big man on campus who everyone comes over to say hello to. I'm just looking forward to a speedy graduation!

Waiting for surgery and update

Here's Alex waiting 'patiently' for his surgery.





.......
And six hours later in recovery. Everything went well. Look ma, no bump.



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Not quite prepared

I've actually started and stopped this update numerous times. Its been a difficult week. First and foremost our family said goodbye to an incredible man. Mark's grandfather passed away at the age of 92 this weekend. Our hearts are saddened to say the least and no matter how long we've gotten to have him in our lives, you are never quite prepared to say goodbye. I am comforted by the fact that he lived a very full life and taught all of those lucky enough to know him what was truly important. He worked hard, played hard, loved deeply, and even until the end, always kept his sense of humor.

I was fortunate enough to have known him and Marks grandmother for many years before she passed away last year and they had a particularly inspiring relationship. They had regular dates that often involved taking long drives, Bill Grays on Sunday nights, and even dancing until that last year. You would catch them holding hands walking wherever they went, or even holding hands sitting together on the couch. It was obvious to any onlookers what a loving couple they were; Yet they never took eachother or life too seriously. They could surprise you with their quick comebacks or gentle teasing. This description does not do either of them justice but both will be deeply missed and I hope Mark and I honor them by living even half of the example they so generously shared.

Okay well how do I transition from that?

Well, We've had a lot of inquiries about updates on Alex so here is the latest: We've met with neurosurgery this week. Its a little funny actually because Mark and I were going to go in there like gangbusters and demand to have a plan and the plan better not be to wait for an emergency before the shunt is replaced which it kind of felt like we were doing in previous appts. But as soon as we started to list our concerns with Alex, and especially how he has a complete lack of drive to eat, and is barely gaining weight which is very different from his baseline and not getting better despite numerous new reflux medicines, new medicines for his heart and lungs, or even oxygen. The neurosurgeon examined him and said he agreed a shift of the fluid in the ventricles in his brain could contribute to the feeding issues, and that is head did seem fuller overall and some other stuff I'm sure he said but all I heard about then was "Okay lets do the shunt revision......

Monday"........... Ummm.....wait, what? We were not quite prepared for that. So then we ofcourse had to mention the possible cardiology issues and just kind of felt panicked overall. We left with the agreement that if cardiology clears him for surgery, it would indeed happen on Monday.

Then today we had cardiology appt. Alex got hooked up for his EKG, had several other tests done and then we met with the doctor. He was great and took a lot of time with us and was very reassuring. He stated that he was confident that the issues with the pulmonary hypertension are really secondary to his lung disease (BPD) and that as Alex grew and his lungs got healthy, his heart would not have to work so hard. He does not feel that he has any primary issues or defects with his heart. HUGE RELIEF. The treatment needed is really just to treat the lung disease, so that likely means continued oxygen so his body doesn't have to work so hard at that but other than that, its just monitoring. Did I mention HUGE RELIEF? The cardiologist said he doesn't need to see him again for another three months and that he is completley cleared for surgery...... Did I mention Monday? We are ofcourse nervous about another surgery for our little guy but also hopeful that maybe, finally after all of these weeks of worrying about him and wondering what is going on, that this might be exactly what he needs to feel better and more like himself!!

Nicholas modeling his new clothes

Giving Grandpa his famous smirk

Not even Grandpa can resist a smooch

Aunt Becky cuddling with Alex

Alex caught sleeping on the job again but still looking cute as ever

"NO, I'm up, I'm up, is my hair okay?

maybe a hat would help

Does it look like I'm trying too hard?

Nicholas is in awe......not with his brother, not with us.....

but with his rattle.

Its the one thing he will consistently give his best smile for.....

and mom was at least around to catch it on film.

Alex has a new trick too, he's found that if he hits the triangle shaped box, it lights up and plays music. Hopefully he won't get confused and try this out on his brother any time soon.

at least for now, they are still the very bestest of friends!

Anything but routine

I've needed a couple of days to process last week's appointment (one with Pulmonary) before writing. The appointment was supposed to be a follow up for both of the boys from the NICU and from Alex's recent hospitalization and his need for oxygen. I can start by honestly saying I'm really starting to hate these "routine" follow up appointments because lately they seem anything but routine.

From a pulmonary standpoint, Nicholas is doing very well. This is pleasantly surprising to say the least because he was the one who struggled the most in the NICU coming off of oxygen. They want to just check some blood work even to see if he might be able to come off of one of his medicines so thats fabulous. That was the first five minutes. The remainder of the next two hours was to discuss Alex.

They are concerned that he is still requiring oxygen, not eating as vigourously (will not wake to eat unless we wake him and still not eating as much as he was a few weeks ago although over the weekend this is slowly starting to improve.) Then we reviewed his recent Echo cardiogram results. Apparently it shows "right ventricular pulmonary hypertension and hypertrophy". DO NOT GOOGLE because ofcourse I did when I got home and it freaked me right out, which I know is what any medical google search will do. In short the way the doctor explained it was the right side of his heart which is responsible for pumping blood to the lungs is enlarged and "stiff". Basically its working harder than it should be and is likely the reason he is needing extra oxygen. Thats pretty much where the answers stop and all the questions begin.

We don't know why this has happened or when it began. Is this why they are still concerned with the weight gain, even though he HAS been gaining. Because of his decreased intake, do they think its really not "good" weight but perhaps fluid build up instead?? Ofcourse as I have sat here all weekend I wonder how long he's been fighting and having to work harder at basic things. Is this why we've known him to be so quiet, mellow mannered? Has he not had the energy to really cry before now? (Yes because maybe not so coincidentally he's finding his voice much more now that he's been on oxygen and slowly it does seem that his appetite is increasing as well.) We are not sure which is sadder; His sweet, sad cry or the fact that maybe he hasn't had the energy to do so before now. It sounds very different than his brothers cry but then again its also very new to us. Ofcourse you can make yourself sick with the "what ifs" and did we miss something and then the scarier question, for how long and could this have been prevented if we had figured it out sooner?

We have a million questions ofcourse and some include, what does this mean for him, what is the cause? is this correctable? something he'll outgrow as he gets bigger? How is this related to his lung disease? What is the prognosis? the treatments?How long will he need oxygen? The list goes on and on. Pulmonary spent the a good part of the appointment speaking to cardiology on the phone to discuss a plan. For now he is being put on two different diurectics, will have blood work, continue oxygen, and even his reflux medications were increased. We were given an appointment to see Cardiology next week for a more thorough work up and consultation. Part of me relaxed a little bit when they didn't want to see him before then, that must be that they are not that concerned, right? But ofcourse when you hear that your baby's heart is not working quite as it should be, talking to someone yesterday would not be soon enough for us.

Next week will be a big week because we will see Cardiology and also neurosurgery. But I think the challenge will be getting through this week to get to next. I don't know what this new diagnosis will mean for Alex, where this road will take us. Obviously like any parents would be, we are saddened and worried to have another health issue befall our son but we are strengthened to know what a fighter Alex is. He has amazed all the "experts" his whole beautiful life so far, and I have every confidence that he will continue to do so!!!

We are so grateful for all of those who continue to keep both of our boys in your prayers!!!!

Can't leave the post like this so here are a couple new pics of our sweet boys!!!!

Sleepy Alex with a smile

Nana doesn't like to be in front of the camera but this one of her and Nicholas is priceless and too sweet not to share!!!!

Alex hanging out...

Nicholas hanging out instead of working out on tummy time!!

and who can resist cute baby feet???

5 Months!

We've been slacking on the photo updates I"m told so thought I would indulge you with a couple of the cutest boys and give you an update while we are at it. Things have been busy so you may want to grab a cup of coffee or even a snack while catching up...:)

Its been a challenging week, nothing terrible but I did completely underestimate the impact of having a baby home requiring oxygen. At the time of planning Alex's discharge last week, all I could think of obviously was getting him out of the hospital and having our family back together. How hard could it be to manage oxygen? In reality I guess the logistics are not really that hard, we just have to be conscious of where all the cords and tubes are whenever we pick him up or provide care, keep an eye to make sure that he doesn't take them out of his nose (he's gotten VERY good at figuring out when doing tummy time, he just has to rub his nose on the blanket and waalaa....no more tubes), very smart boy!

More of the challenge I think is the emotional piece. The alarm sounds and your body goes back into fight or flight. The major difference is you know you are here alone with both your babies, and don't have the "back up" of the hospital staff or anyone actually if there really does become a problem and that just downright has made me come unglued a couple times already.

For the most part, this is all manageable, although obviously not ideal. You feel always just a little more on edge, and this on top of not really understanding for sure what caused this or if/when he'll no longer need it. Yesterday I had quite a scare when the alarm sounded and as I watched the monitor, the numbers kept dropping. Immediately like always I look to see if the prongs are in his nose but surprisingly this time they actually were so thats when the true panic set in. Ofcourse at this exact moment with the alarms sounding both outside and inside my head, Nicholas also started to scream, making it quite impossible for me to stay calm. When the numbers started to fall towards an oxygen reading of 50, I thought NO WAY. (Ideally your oxygen rating should be close to 100 but anything above 92 would be acceptable). I remember what 50 looks like from our old hospital days and I thought to myself he does not look 50, but ofcourse there is always a part of you that is more likely to keep second guessing yourself rather than a monitor. I then checked the sensor on his foot and it had come loose so okay deep, deep breaths and crisis averted. But it sure left me with a very helpless feeling.

We go back to Pulmonary clinic tomorrow morning so we'll see what they say. I have to say we are still concerned about whether the shunt is contributing to this situation, especially due to the relatively new feeding issues as well but there are no other symptoms at this point and is "soft" spot is still soft which apparently is one of the first places we would see a difference if it was a shunt issue. I'm just not convinced. After tomorrows appointment, we may be pushing for another appt. with neuro to discuss.

In the good news department, the boys are starting to change before our eyes. Alex is just beginning to be more vocal which we love because we were starting to worry about the lack thereof. He is doing more grunting, crying, and in general expressing himself. He is also holding eye contact a lot longer which just melts your heart when all of a sudden you realize he's just staring at you. Both boys are exploring their environment a little more, they are finding their hands and just starting to grab at things, your clothes, my hair, hmmm...I feel the ponytail stage starting for me, ha,ha

Nicholas is getting even more vocal (if thats possible). He likes to talk to us throughout the day and it actually doesn't sound like all complaints so we are enjoying the new "music". The most precious thing ofcourse is that it seems that their smiles are just starting to emerge. It may still be "gas" smiles but we don't think they all are these days. Either way we are not terribly concerned with the cause, just enjoying the result!!!

Oh and weights: Surprisingly with all the encouraging that we've had to do with Alex and getting him to eat, he is still gaining very well. I was shocked when they weighed him in at nine pounds, 1 ounce yesterday!!!! Nicholas is also doing incredible. He is up to eight pounds, nine ounces. We couldn't be more thrilled! Tomorrow they are officially FIVE months (two months adjusted age). Just can't believe it.

On a side note, I actually got out of the house earlier this week and connected with other local moms who have children with medical and other special needs. Its a great program I just happened to find on line called "parent to parent". Its an organization that helps bring local parents together facing similar issues for information sharing, and support. I've only been to one outing so far but it was soooo validating to talk with other moms raising children while trying to navigate a myriad of health or developmental issues. We were able to "vent", discuss local doctors (the good, the not so good), medications and treatments, give eachother tips and support. Our children all have different needs but we had much more in common than differences. They are a fantastic and inspiring group of moms and their trials and stories really put things more in perspective for me! I feel very blessed to have met this group of ladies and I am already looking forward to next months get together. Its another reminder to me that God works in wondrous ways!!!

Oh and I could NOT have gotten through this last week (and many other weeks) without the emotional and hands on support of my Mom, my Aunt Kim, my hubby ofcourse and dear friend Vickie. Thank you for being exactly what and where I need, when I don't even know what that is half the time!!!!! All my love and gratitude!!!

Nicholas

catching a few smiles...

Nicholas posing for the camera

Papa hanging out with Alex

Sleepy Alex

more smiles starting....

Boys hanging out and thinking"theres that darn flashing light going off again."

Maybe if we stay very still, it will go away....

Alex thinking "ahhh, there's a good arm rest"