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?


caryanne said...

Great post Holli! I remember fearing that dreaded RSV. We went NOWHERE (except Dr appointments) for their first winter. NOWHERE! The second winter, I relaxed ALOT. They got a couple colds but otherwise were fine. However, mine didn't have as severe lung problems as yours.

Awesome photos! They are so cute. LOVE the hats!

Anonymous said...

Holli, What an exciting time for you. I am sure this year will be one never forgotten, but each year after will also be one never forgotten. Babies grow so fast and soon they are "all grown up" What a joy to be celebrating their first birthday. And, Google for sure is a Drs. nightmare, but none of us can help but use it for information. I laughed at your comments because everyone is the same. The Drs. tell us not to look up what they are saying, but it is the first thing all of us do. Then we say why did I do that. Enjoy all these special days they are certainly blessed one. Jean Constantine, Chili Pres.