Monday, March 29, 2010

Almost there.....

I know I know, I've been slacking lately on updates. No real good reason except my beautiful babies do have a way of keeping their mama busy just with the every day. Tried to redeem myself with extra photos down below...

Here's the quick and dirty: Boys are doing well! They are each about 15 and a half pounds give or take. We said good bye to weekly weights because they are so stable. Its really a blessing because we all know that I have had a slight tendency to obsess about the numbers so in this case, less statistics have been better and we are relying casually on the day to day, and going by the more normal way of knowing everything is well. Are they eating? check! drinking? check! Peeing and pooing? check! okay, life is good! Even for someone who likes details, its refreshing!!!

Alex is doing fabulous with the oxygen. Over the last month we have been able to turn down the oxygen he needs little by little. Just this weekend we were able to dial him down to just 1/16th of a liter, and for those that don't know oxygen lingo, thats VERY little! The next step will be to come off of it entirely so we are soooo hopeful. Its been almost a month back on and mark and I were thinking about this: really for his entire life, he's only been off oxygen two periods of about three weeks each. We are certainly hoping to break that record real soon. Its not the end of the world certainly, and its manageable and if thats the worst thing that we need to deal with acutely, so be it. but boy are we tired of all the cords, beeping alarms, and tape that covers up our baby's face to keep his little chunky hands from taking it off. The tape inevitably gets gunked up with whatever meals were for the day and flares up his skin something awful underneath and then he cries every time we have to change it. Yes, we know it could be so much worse but all the same looking forward to a good bye celebration party of the oxygen and all the accouterments (hopefully) very soon.

Speaking of celebrations, Mark and I are mystified that almost an entire year of our boys life has passed. a YEAR!!!!! We have certainly crammed a lot into this year, and we are focusing on all of the happiness, love and joy that this last year has ushered into our lives. We are going to have a small get together just with very close family and friends. We know at just one year, the celebration is really more for us than for them. We are okay with that, ha,ha. After a year of being in quarantine and isolated largely at home, we are really looking forward to seeing some of our favorite people in one place, at one time and saying thank you for all the support and love that they have shown us during this last year, and then some!

I said "quick and dirty update?" you say. I know, I know so you can officially stop here and really not miss much. The following is just my rambling because if you know me, you know I should never promise to NOT be wordy. :)

So I wrote a recent post about getting spring fever, and can't wait to get outside, breathe fresh air, be unchained from this house, etc. ALL of which is sooooo true. We have started to bring the boys very slowly out of this cold/flu quarantine, just with walks outside as the weather teases us, and even once to the baby store just to wander and for the first time in almost 11 months, feeling like a "regular" family making a trip to the store. It felt WONDERFUL. People smiled as they looked into our carriers, but luckily no one tried to touch. Mark and I didn't have to call each other on the cell phone asking what the other thought about this baby item or that one, we could just say "hey honey, what do you think of this?" and just largely hang out as a family OUTSIDE of our four walls. It felt so simple and easy. Okay, here's where I might be sort of not telling the whole truth. It was all of that, yes, but honestly I could not turn my "oh how many people have touched that that were sick, and now I have touched it too, and with the same hands touching my babies-off." seriously could not turn it off. Mark thinks I'm neurotic I know. I agree I am (sometimes). Much more so since the twins.

The thing is I have never been a germaphobe before, not EVER. Before the boys, I really gave very little thought to colds, germs, and the like, probably less than I should have. But now I am a NICU bred mama. I have been trained, hard core trained for more than three months. Every one who wanted to even see the babies, let alone touch them scrubbed up until they were raw. and you purelled after everything you touched and again before touching the babies. It kept them protected. Its been a way of life now. No, I don't scrub up to my elbows anymore but I still see potential lurking germs EVERY WHERE. door handles, elevator buttons, dollar bills, i could go on and on. We carry purell every where. In the car, in my purse, diaper bags, etc. We have relaxed some at home obviously but whenever one of us is out or Mark comes home from work, the first thing we do is wash/purell. We were educated left and right about keeping the boys protected as much as possible because their lungs would not be able to handle the regular germs/colds like other healthy babies. We have found this to be true whenever Alex gets sick and quickly needs to be hospitalized and/or needs oxygen. Each time this has happened and we watch our baby fight to breathe, its paralyzing fear. Your mind goes to dark places.

The biggest threat to premature babies is "RSV". I've mentioned this before but not in any great detail. It is a common respiratory virus that in older children seem like just a runny nose and maybe a cough, but to our little ones with chronic lung disease already, it is very threatening. They just don't have the ability to fight it off as easily and many premature babies need hospitalization, oxygen, some times even ventilators.

(for more on RSV:
Here's the snapshot for those who are interested (or skip to below):
Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.

More severe RSV disease may be seen in:
* Premature infants
* Infants with chronic lung disease
* Infants whose immune system does not work well
* Infants with certain forms of heart disease
RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections typically begin in the fall and run into the spring.
In young children, RSV can cause:
* Bronchiolitis
* Croup
* Ear infections
* Lung failure
* Pneumonia
RSV is spread easily by physical contact. Touching, kissing, and shaking hands with an infected person can spread RSV. The disease spreads from person to person through contact with contaminated tiny droplets or objects that the droplets have touched.
RSV can live for a half an hour or more on hands. The virus can also live for up to 5 hours on countertops and for several hours on used tissues. RSV often spreads very rapidly in crowded households and day care centers.
* Bluish skin color due to a lack of oxygen (cyanosis)
* Breathing difficulty or labored breathing
* Cough
* Croupy cough (often described as a "seal bark" cough)
* Fever
* Nasal flaring
* Rapid breathing (tachypnea)
* Shortness of breath
* Stuffy nose
* Wheezing
Note: Symptoms vary and differ with age. Infants under age 1 are most severely affected and often have the most trouble breathing. Older children usually have only mild, cold-like symptoms. Symptoms usually appear 4 - 6 days after coming in contact with the virus.
Antibiotics do not treat RSV. Mild infections go away without treatment. Infants and children with a severe RSV infection may be admitted to the hospital so they can receive oxygen, humidified air, and fluids by IV. A breathing machine (ventilator) may be needed.
A simple way to help prevent RSV infection is to wash your hands often, especially before touching your baby. It is important to make certain that other people, especially caregivers, take precautions to avoid giving RSV to your baby. The following simple steps can help protect your baby:
* Insist that others wash their hands with warm water and soap before touching your baby.
* Have others avoid contact with the baby if they have a cold or fever. If necessary, have them wear a mask.
* Be aware that kissing the baby can spread RSV infection.
* Try to keep young children away from your baby. RSV is very common among young children and easily spreads from child to child.
The good news is that we are coming to the end of the RSV "season" here. Its certainly not the only danger to the boys but one of the most severe threats so we should be able to loosen up a bit more. We should feel better about breaking out of this house a little bit more, breathe a little easier that some of the biggest threats are behind us. We've almost made it through this first year, which is CRITICAL for our boys health, for our peace of mind. 
I have to admit though as grateful as my heart is, as MUCH as I want to break out of this house and show my boys off to the WORLD, FINALLY after a whole YEAR............I'm still terrified! I still see danger lurking every where. What is the day that RSV season is officially, utterly gone? Can anyone say? What if some other random common cold sends my baby to the hospital gasping to breathe? Even though they are not a pound and a half anymore, and they are so much bigger and older, they still do not have the same lungs as a full term baby even now. I know illness and hospitalizations can happen to any baby, I know no one is promised that bad things WON'T ever happen to their babies, things I am not even thinking of I'm sure. But we've seen the inside of too many hospital rooms this year. Every one says "you do the best you can with the information you have", "you keep them protected as best as you can", and we have." I know I have to let my babies into the world at some point soon beyond these four walls, the car, and their doctors. I know, I know, I know. I REALLY do want that. I want to stop seeing "DANGER" every time I go out with them and some one wants to touch their hand or even enjoy their sweet faces and smiles without thinking "have they been sick or been around someone who is sick?" 

I want my boys to know YOU, my family, my friends. They have soooo much to learn from you (and I think you them). I promised Mark that we would start venturing out slowly, as finally RSV season is reportedly winding down and the boys HAVE come through this first year at last. I promised that I would lessen my tight hold on those precious boys just a bit at a time. I WILL....I WILL. I Just have to bite my lip, and struggle through it a bit until I see that they really are going to be okay, and the "DANGER" signs slowly stop being a part of my every day vision. 
I just ask you to give this mama a little leeway. We've been through the ringer this past year and we've had to learn in every detail the possible dangers of them getting sick and watching what happens when they have gotten sick. Its not just the sniffles for them, their lungs are too hardened from all the treatments they needed back in the NICU to easily get over colds and the like. As stressful a year as we've had with Alex and hospitalizations and oxygen, we know we are sooooo lucky that both boys have done as well as they have and it could have been a much different road. We have done the best that we can of keeping them protected and going by the advice of their doctors on how to limit exposure to illness, and its hard just to all of a sudden stop that kind of thinking from one day to the next........ so please don't be offended if I still offer you the purell before you touch/hold them for awhile. (a little at a time, right?) Besides the boys are sooooo worth a quick alcohol bath, right?
Just look at them...

Don't do it Alex, don't crack a smile in front of the camera!!

Being silly.....

oh no mama is in trouble with that camera again.

uh oh gotcha!! Alex giving his award winning
giggle to our dear friend Vickie

Nicholas's silly face, he thinks its hilarious to stick out his tongue
all the time these days!!! (it is)!!

This boy has definitely lost his camera shyness!

Nicholas modeling his new hat....
getting ready for summer

hats are good for soooo many reasons

they keep the light out of our eyes

they highlight our baby blues

we can change them up with our mood
One hat is never enough,

or our attitude....

they can cover up bad hair days (or no hair days)

or hide away from the darn paparrazi

hello? are they gone?

Wednesday, March 17, 2010

Spring fever

We are happy to report that both boys are doing very well. Nicholas got over his first cold and Alex has recovered amazingly fast from his pneumonia. The visiting nurse was out earlier this week and was astounded that she heard nothing left over in his lungs, they are completely clear!!! He's all finished with his antibiotics and his nebulizer medications so now its just getting the slow weaning back off the oxygen. We are thrilled to have them both be doing so well after a rough spell.

Mother nature has been very good to us as well. Last week she teased us with a rather warm day for this time of year (50's) and tons of sun. The boys and I were able to take our first walk of the season before one of Alex's appointments and it was so revitalizing to breathe in the fresh air, feel the sun on our backs and just be out and about for even a few minutes. The following few days were back to the chilly grayness so we were getting spring fever really bad. Well to be honest the boys don't really have an understanding yet of what they've been missing so its more me that has been looking longingly out the window and willing the warmer days to be here already, and for now they are. We have a beautiful week here with unseasonable temperatures. Today was nearly 60 with nothing but blue skies. okay now I"m sounding like a weatherman but whatever. It was just awesome. The sun beckoned me out all morning. The tricky part was the timing....

Now before I became a mom, I would often see parents out for walks with their little ones. They always looked so happy, refreshed. I couldn't wait to be one of them, I think I probably oozed envy as I watched them drift by from my porch. But the last couple days as I finally get to try out being one of those moms, I'm missing the mark terribly I think. How could something seemingly so simple end up being this complicated? I mean its just a walk, I used to just grab my sneakers, sunglasses and go. So I'm thinking whats the big deal of throwing in a couple of babies in the stroller and having at it. Right? Maybe I've just got to get this whole thing down but here's what my day ended up looking like:

Getting both the boys up, giving them their medicine, waiting the 20 minutes before being able to let them eat (should be 30 in a perfect world but hey, who's perfect? and have you heard my boys while I try to keep them waiting to eat when they are hungry? I think you would if you lived anywhere in my neighborhood) but I digress. Okay, so feeding time for both, today the menu featured sweet potatoes and some yummy mixed fruit. We then did some diaper changes and I'm all excited to just about get outside. I have planned it perfectly that we have enough time to get in a 30 minute walk, with time to get back, have our bottles and get down to nap time before  its time to be up again and physical therapy session starts.

I have the car seats ready (that fasten in the stroller), and I put Nicholas in his first. I fasten the straps, attach his favorite teething toy so he has something to nibble on for the ride, put on his hat and cozy his blanket around him and turn to do the same with Alex. The last few minutes Alex was making himself known, like what the heck is taking so long, what are we still doing here? I get his jacket on, switch his oxygen over to the portable one and snuggle him into the car seat with his blanket and teether. I get him all clipped in when I hear a familiar noise. This from down below. Well lets just say the antibiotics he was on has really threw his little system off and he's still getting over the side effects of that so its definitely not something I could ignore. Okay, no big deal. I got him back out, changed his diaper, got him dressed and put him back in the car seat all snapped in and warm. I have to fiddle with his oxygen monitor that at that moment was alarming and said he had no heart beat or oxygen reading (hmmm doesn't match up to my baby who is chewing on his hand and chatting endlessly). I throw that over my shoulder along with his portable oxygen bag and heave a car seat in each hand (definitely NOT as easy as others have made it look) as we head to the garage where the limo stroller awaits.

Except I hear another familiar sound as we are walking. Nicholas is coughing and something must have not sat right with him because here comes lunch back around. Not a lot but its not pretty either; never looks as good the second time around let me tell you. Really, I'm not making this stuff up. I haul both boys back inside, back to the living room near the changing table. I take Nicholas back out, change his sweatshirt, run upstairs to get a new one, throw that one on him, go to put him back into the car seat when i realize that it got messy too, so I run to grab a cloth to get that cleaned up, dry it out, and fasten him back in, back on with his hat, and his blanket and yep, am already getting tired.

So out we go again and the sun is still shining and I can hear others enjoying themselves on the street, walking their dogs and their babies and I'm all recharged again. We've lost a little time but thats okay, its still a beautiful day.

I'm lucky enough to have not one but two double strollers. One I keep in the truck thats very basic, I use for appointments, its light and VERY easy to use (idiot proof some might say). The other was a gift that I love. Its shiny and pretty and has more bells and whistles. Thats the one I have meant to take on walks in the neighborhood, the mall, etc. When the boys outgrow their carseats, its one that they will just sit in like big boys do. Well I used it very rarely last year after the boys got out of the NICU because.....well they had just gotten out of the NICU and as first time parents with babies with lots of health issues, medicines, and very little sleep, well we didn't get out so much before the weather started to change. So anyway, didn't get a whole lot of time to use the stroller. Anyway, I took the protective cover off of it (okay, garbage bag but in my defense, it IS protective) and went to unlatch it to open it and couldn't figure out where the heck the latch was. Seriously. Maybe I shouldn't admit that..... In my defense I didn't get much sleep the night before as Nicholas was up about every hour the first half of the night with teething pain and then Alex's oxygen alarm was on the fritz the second half of the night so I'm telling you sleep deprivation does chomp double digits off of your IQ, really. I'm not sure its only temporary and starting to worry. This situation isn't helping the matter but REALLY have you ever looked at one of these double strollers? They are mammoth, and all the gears and gizmos look alike and here I am seriously trying to figure out which one is the one that unlocks the whole darn thing. The boys are really starting to get peeved just sitting there watching me and i was afraid I was pulling on the wrong lever too hard and that I would just end up breaking the darn thing so there that beautiful double limo bus sat while we took the idiot proof stroller i keep in the truck. :)

After all of that we had about 15 minutes left to enjoy that beautiful sun before we had to get back for a nap and the boys therapy but it was a beautiful 15 minutes. I am certain I did not look like the carefree moms I swear all these years I've watched walk by my porch. I was already working up a sweat before the walk even started with lugging the boys in and out of the house and all the rushing around beforehand. I didn't have my makeup on, my hair was thrown up in a haphazard pony tail, and when I got home i realized I was even wearing some spit up on my jeans. How did every one else make this look so easy? Okay so maybe I'm talking about motherhood, parenthood in general, not so much just the walk. I'll linger on that one awhile i think.

Hopefully I will get more adept at getting them and all the stuff out the door, not to mention figuring out that limo bus. But right then, none of that seemed to matter. I enjoyed every single minute of it as I drank in the fresh air, felt the warm sun on my back and felt my feet connect with the pavement. I'm not sure if the boys loved it as much as I did but they weren't fussing or crying. Actually I thought they would be much more curious of the outside, and take a good look around but their eyes stayed pretty much fixed on me. I hope they weren't thinking what a mess their mama was, but hopefully instead of what a happy mama she was to be sharing the spring day with her two boys!!!

We couldn't help ourselves to breathe in a little more fresh air with Daddy when he got home: Except we had to make sure after we got our medicine that we got more food in, then bottles and then ready for bedtime sooooo tonight we skipped the walk and hung out on our porch instead!!!!

you would think that these are two of the most serious boys you'd ever met by our pictures but its the dreaded camera effect. They are all smiles as soon as I put the darn thing away ofcourse :)
enjoy anyway, we think they are gorgeous, serious faces and all!

Monday, March 8, 2010


Life is getting a little easier every day. The oxygen monitor, well that definitely stinks as much as I remembered. It goes off all hours of the day/night and sends our adrenaline running but thankfully most of the time they are all false alarms. Alex is doing well, I think better every single day. He has more trouble in the morning keeping his sats up after laying down all night (even with the incline and humidifier, etc.) but we've just gotten into a new routine of getting him his nebulizer treatment first thing, doing all the pats on the back after to try to help him break up the congestion and letting him play upright until his bottle is ready. He is such a trooper. He found an extra benefit to the oxygen cord too. who knew?

The home nurse visited today and says he sounds a bit better already regarding his lungs so I feel very happy that we pushed to get him home when we did. He's definitely getting more rest here and mommy and daddy find it easier to tag team both boys when we can all be together (not to mention not having to stand guard at the hospital door every 20 minutes when someone wanted to wake Alex up for one thing or another)! His weight is still dropping just a bit, his appetite is still not where it was, but the nurse said it can take some time with this. Only four ounces difference between the boys now. I know, I know Alex certainly LOOKS like he has some "reserves" but believe it or not even when he's well, he eats quite a bit less than his brother and hey, we love his sweet chunky rolls!!!

Even when he's not feeling 100%, he still shares a smile!!!

Nicholas is also happy to have his brother and the whole family home. Its so sweet how they look for each other. Nicholas even recognizes the video monitor and looks for his brother on it when he hears his voice. Its really the most precious thing. 

Nicholas is doing well, still fighting his first cold. The nurse was able to reassure me that as congested as he sounds, its not moved into his lungs so I am feeling very thankful about that. Hopefully he will be feeling better in no time too. Even though he's been sick the last week, he decided it was time to do a new trick. We found him this morning in his crib sleeping on his belly. This means he has now figured out how to roll from his back to his belly instead of just from belly to back. Watch out world, I think this little one is going to wreak havoc once he's truly mobile, ha,ha.

I have to say again thank you for all the love and support and well wishes sent our way. It really  helped us get through a very stressful week. I can't believe it was just a week, seemed like forever when we were in the middle of it. Anyway a really HUGE thank you to my mom who was always where ever I needed her to be, even on her own birthday, there are not enough words to say thank you. A huge thank to my aunt as well. You've really been an extension of my own mom. Thank you for grocery shopping, helping at the house and supplying us with a healthy supply of all the coffee and food to help keep ourselves going. Also to Grandpa Fred, Grandma Karen, Vickie and my mom who all helped at the end of the week take care of Nicholas while Mark and I were really petering out doing around the clock at the hospital. We really can't thank you enough.

Also thank you to my amazing friends who all literally came running when I sent out an SOS email when I was feeling particularly weary. You definitely were exactly what I needed to recharge and I am blessed to have you in my life!!!!

Here's an older pic that I just thought was too sweet not to share.
Blessings to all!

Friday, March 5, 2010

Were home!!!!

I can't believe we are actually home. We were discharged tonight. The doctors all agreed that Alex will get the most rest at home which is the number one thing he needs to fight the pneumonia. We are sooooo happy to have him home. He was starting to cry at every one who came in the room because of all the wakings, frequent suctioning, treatments, etc. It was heart breaking to see him so unhappy and fearful.

The visiting nurse will come to see him tomorrow, and again on Monday to check vitals, listen to his lungs, etc. and then we'll take him to see his pediatrician on Tuesday so he'll be looked after very closely.

As happy as we are to have him home, we are ofcourse just a wee bit anxious about his oxygen levels falling and the all too frustrating home oxygen monitor. Its not 100%, what is? We've already had the respiratory therapist on call come out to check the darn thing. At times the machine just goes blank and doesn't give a reading or gives a really far fetched reading. The therapist was very kind, brought out a new machine, new leads and spent time trying to assess. The new machine and leads are doing the same thing, its just not all together giving consistent readings. The therapist speculates that two things are likely happening, positional issues where the the wire on the lead is bent and can't pick up and transmit a good signal and also likely Alex has poor circulation in his legs and feet and may also be limiting it from always getting a good read. Having him "plugged in" 24/7 for at least awhile, we are bound to get lots of false alarms, even in the hospital this happened because again nothing is 100%. We are not worried about day time when its easy to look at him and know if he's in any kind of trouble  breathing wise. Its the night time that will be challenging when it alarms and we need to go see if its giving us an accurate 'wake the heck up and check on your son' or an alarm thats more 'ha,ha, I'm just messing with you, I'll correct myself in a minute".

I expect a stressful, nail biting, not sleeping much couple more nights until we see that he continues to improve and we get used to the bells and whistles of around the clock oxygen monitoring again. Its all worth it though because Alex is home where he belongs!!! Its only been a few hours and he's already sleeping more peacefully AND eating better.

Promise to post pictures soon.
As always: thank you for keeping us all in your hearts and prayers!!! We are and feel very blessed tonight to have our family all together!!!

Thursday, March 4, 2010


The last 24 hours have been a roller coaster ride with Alex. We were told yesterday that his pneumonia has worsened, instead of being in just the right lobe, now its also in the left and he sounds even more congested with every breath. They bumped his oxygen level back up and continue to do nebulizer treatments, antibiotics, humidifed tent while he sleeps but while they say things have gotten worse, there is not really more that they can do at this point but let his body recover while they try to protect his lungs from infection with the antibiotics. The hard work has to come from him to cough the junk out of his lungs. We have been worried and feeling discouraged and it was not a great night.

Worse, being in the hospital with your sick baby, separated from your spouse or anyone really to talk to for hours on end lets your mind go to dark places. Between all the needs for monitoring and caring for Alex, machines beeping for completed IV treatments, or need for new ones to start, and even beeping just because there is a kink in his IV line day/night, well it was a VERY long night and very little sleep. Not the best combination for clear or peaceful thinking. Were only on day 4 but every day here somehow feels like a week. (thank you to my family and friends for all the notes and visits and prayers, as always you're helping us get through another stressful time and we are so thankful)!

Today is a new day and better, still a little bumpy ride but Alex is acting more and more alert, happy. The doctor said this morning he didn't sound any better in his lungs but not any worse either. His oxygen falls to the low 80's and even high 70's several times today and needed to be reminded to cough and he just sounds terrible at these times and I worry he has to reallly struggle to breathe. Its so hard to be patient when I want to him breathing to be easier for him right NOW. Even with all the treatments, there is no quick fix. They remind me that even with a healthy adult, it takes several weeks to recover from a bout of pneumonia so with Alex it is expected to take many weeks. They describe healthy lung tissue like sponges but because of Alex's lung disease and scarring, his are really stiff even normally. He has to work really hard at getting all that congestion moving out and not just moving and getting plugged in another spot in his lungs and its just going to take time for him to be able to clear it all out. Sounds like there should be a better way but I remind myself that he is incredible and he will get through this like he has done with every other obstacle in his way, like a champion!!!!

I love our pediatrician and while I sometimes feel quite discouraged after listening to some of the doctors at the hospital, she always is so positive and makes me feel much more hopeful. She also KNOWS Alex the best and knows us as parents and that we would do anything for our sons! She reminds me that his body needs to heal and the number one thing is for him to get the rest he needs, not exactly what he can get in the hospital. So the number one priority is getting him home back into his routine, sleeping and out of the hospital as soon as its safe and away from other potential illnesses at the hospital. Mark and I ofcourse whole heartedly agree. The main things to accomplish this are to get him eating again, switching over his IV's to oral medications and having his breathing not be so labored. We can go back to managing his oxygen at home, nebulizer treatments, etc. We were sooooo close to having him off of all of this and I am confident we will get there again!!

He's doing a bit better with bottles today and did switch over to oral medications which is great. They also got him an exercauser which he loved so he can be upright and moving around more. He tired really quickly but it was so great to see him enjoy this!!! I'm pretty anxious about his breathing and desats but I'm praying that this will even out very soon and we can get him home where our whole family can be together again.

I'm sorry if this is scrambled, people have been emailing asking for updates and I wanted to get this out before the night is over. I'm sorry neither Mark or I have the energy to call or even email individually right now, we are just literally running back and forth to and from the hospital to each take care of our boys. Thank you for all your continued prayers, I definitely feel them working!!!!

Wednesday, March 3, 2010

Quick update (x2)

Alex seems to be turning the corner!!!! They turned down his oxygen setting one level and are trying nebulizer treatments to help break up the congestion in his lungs. He seems to be acting peppier and wants to play a bit, more alert which is sure making his mommy and daddy breathe a little easier! They are turning down his IV fluids too so that he might be motivated to drink more and he's already taking his bottles a little better according to Mark. I can't wait to see him today. My arms are half empty without him.

As far as Nicholas he seems to be (hopefully and knock on wood) just having his first run of the mill cold. Its just enough to throw his momma over the edge ofcourse because of worrying about both the boys. I don't like how he sounds, you can hear him rattle a bit during his breathing so ofcourse I've already called the doctor. I'm a newbie to all of this, I have NO idea how a baby sounds "normally" with a cold so ofcourse I"m worrying. He's not working hard like his brother to breathe or anything and he's not acting lethargic or anything. But especially at a time like this, I need to be reassured that nothing is settling into his lungs and just hear that he's okay. Thankfully I have an amazing pediatrician and office staff and they did  not hesitate to see him today. I am bringing him in just a couple minutes and hopefully will put my mind at ease!!!

thanks so much for all the prayers!!!!!

Doctor was glad to see Nicholas, thinks he is "retracting" a little more, working just a bit harder at breathing and is a little "squeaky" sounding with his congestion but luckily his lungs are still sounding clear and his oxygen level is great. She told me the signs to look out for that would require another look because with his BPD and previous lung issues, we have to be careful. I pray that we can just ride out this cold with no further complications. He is acting like his perky self and eating fine which is a relief!!!

Mark just called me and said that Alex is not doing as well again. His lungs are sounding worse instead of better and the doctor is concerned that he might have a virus on top of the pneumonia (likely the same virus that Nicholas has and Mark is getting). They have bumped up Alex's oxygen level, are giving him nebulizers and watching him closely. Honestly I was so worried that we'd get Alex home only for him to catch this cold going around and have to do this all over again so if he has to get this, let him be in a safe place to get through it, right? Its just got to get better from here! I'm waiting for my mom to get here to watch Nicholas so I can get up to my other little man and spend time with him and Mark and then I'll stay at the hospital over night and Mark can hopefully get some needed rest at home (with Nicholas) ofcourse. Thank you for continued prayers for our boys!!!!


Well I was going to make sure that my next post was more upbeat than the last one but thats not exactly what is in the cards right now. I do just want to say thank you briefly for all the comments and personal emails I received after my last post, I was very touched. I always feel a little guilty after re-reading one of my posts if it seems on the negative side but one friend made a good point. She said it made her feel less alone to know that other moms who have children with more challenging circumstances aren't always "miss suzie sunshine" because thats just not realistic. Heck, thats not even realistic for anyone with regular day to day stuff. So thank you for reminding me its okay and letting me vent.

I'll try to be concise and coherent but we are feeling a little exhausted and overwhelmed. Alex has had a rough few days. On sunday afternoon he was coughing and gagging with his bottle. Not entirely out of the ordinary in our reflux history. He ended up throwing up shortly after this bottle and we were thinking, oh no not a GI bug. Later after his nap we fed him his cereal and fruit which he loved but stopped half way through and threw up again. hmmm. still thinking GI bug and wondering when Nicholas was going to get hit with it too. Sunday night we layed him down for a nap when he got up noticed his nose was running and he was really congested. Just that quickly and thought, wait a minute, a cold too? We stressed all night wondering exactly what was going on and Alex slept on Daddy quite a bit and we just knew whatever it was, he wasn't feeling well. (as I've said before Alex is a love but he's not by nature a cuddler when he's feeling well, he prefers playing).

Still feeling soemthing wasn't right I called the on call early Monday morning. They brushed me off after I mentioned that I had an oxygen monitor and hooked him that morning and he was reading in the low to mid 90's, not terrible but also not his recent baseline. They told me just to call the pediatrician office when it opened so exactly at 8:30am thats what I did. We started getting more concerned when we noticed he was reallly working at his breathing (breathing faster) and he truly sounded rattly. Not knowing what a child sounds like with a cold we were still hoping that we were overreacting and would be sent home with just a "he's fine, its just a cold and will run its course". Not what happened as you can see from the title of this post.

They didn't like the way he was breathing faster either, and the doctor thought his lungs definitely sounded "junky". He wasn't running a fever or anything but wasn't acting himself still. He seemed in my eyes to be getting worse, not better. They gave him a nebulizer treatment but it didn't seem to help at all. I remember hearing and learning a lot in the NICU and Mark and I kept re-playing Sunday night over and thought it was odd that he didn't get congested until AFTER his bottle and choking incident and started to get more and more nervous that something got in his lungs. I asked the doctor about this, its called "aspiration pneumonia" and she said it could definitely be that and sent us to the emergency room.

I spent all day in the emergency room with him and he was just content to sleep on me. He started running a fever for the first time and had no interest in eating. We finally got the xrays done, lab work, RSV swab, etc. and it came back that he does have aspiration pneumonia. The xray results fit our description of what happened on Sunday. I felt terrible, should we have brought him overnight on sunday? The doctor tried to reassure me that it normally takes a few hours for aspiration pneumonia to develop and if we brought him in too early, it might not have even shown up on the xray. I thanked her for being so kind. I felt like a wreck and  Mark had to be at home with Nicholas and just hearing updates from the other side so not a picnic for him either. A very stressful time for all of us.

In the midst of all this, God is good to us. I had a wonderful friend come to meet me at the ED as soon as she heard and sat with me all day until we finally got a room on a pediatric floor for Alex. I'm not sure if I would have even been able to run to the bathroom this whole day without having someone I could trust to hold onto Alex for me (so thank you Julie!!!!) And for my family with their love and support. Particularly my Aunt who wouldn't you know it just happened to get a job at the hospital a month ago and works on a pediatric unit of all places right around the corner from where Alex is. How coincidental? hmmm. My aunt has been wonderful checking in on all of us, bringing us food and comfort throughout the day and just in general trying to ease the stress!!!!!! Thank you Aunt Kim!!

The first over night at the hospital was tough. Alex is on IV antibiotics, IV fluids and oxygen but even on oxygen he was breathing much faster than what anyone wanted. They kept a very close eye on him coming in very often and I could tell that they were a bit worried that he might not need something more than supplemental oxygen those few hours. It was a hard night worrying and wondering what was going to happen and watching my baby not act like himself at all. He's also in a humidified tent when he's sleeping to keep things moist and hopefully help him keep coughing things up.

The next morning I was holding him and trying to get the oxygen to stay in his nose, and keep him covered with a blanket trying to watch all the tubes, shouldn't I be a pro by now? Apparently not because a minute later after trying to get him comfortable I see blood on me, then on him and thought WHAT is going on? Turns out his IV came out. They spent the next hour trying to find another place to put one, while Alex moaned and cried. I fell apart and did what any grown woman would do. I called MY mommy and thankfully she came running and held me together the rest of the day (thank you mom)!!!

Alex is holding his own, he is starting to cough some of the stuff out which is a good thing. His breathing is a little easier which is a really good thing. Mark says lastnight Alex actually slept more restfully and seems to be more alert today!!! He even took four ounces from his bottle so I am praying this means he is definitely feeling better!!!

I came home lastnight to be with Nicholas and try to get a bit of sleep and Mark really wanted to spend time with Alex as well. Its soooo hard to feel like no matter where you are, you feel guilty for not being with the other baby. Just to throw in an extra dose of fun, Nicholas looks like he is battling his first cold. Just began yesterday. The typical stuff (runny nose, cough, feeling miserable). He wants his mommy and daddy too. He didn't sleep very well at all lastnight and kept waking himself up with coughing. Ofcourse Mark and I are feeling the extra stress of wanting to take turns caring for Nicholas but also not wanting to risk bringing one more thing up to Alex to deal with. We are just exhausted mentally and physically already. We just want both of our babies home and feeling more like themselves and then we can all start literally breathing easier.

Even though things feel heavy for us, I am reminded by looking around the hospital and particularly the pediatric unit that these things that our babies are dealing with ARE manageable. They WILL be okay and I'm sooooo grateful for that, and all of our family and friends who continue to pray for them, thank you for all of your love and support!!!!