Ty and Duckies

Here are some pics of Tyler in his duckie outfit, looking cute as ever!

Today was good for both boys. They went down on their CPAP pressure today from 6 to 5 and neither of the boys showed negative signs of the change. When we arrived, Parky was at about 25% oxygen and Tyler was at 33%. Considering we breathe 21% oxygen, this is fabulous! If they continue to do well in the next couple of days, they will move to the cannula! Yeah!

More good news, their feedings were increased a couple of ml's, meaning the boys are digesting and growing at a good pace. Good day in the NICU!

Came and went

September 18th

Last Friday came and went......just like any other day......there was work......there was the drive to the NICU......there was family time in the Koala room......it came and it went like any other day.....but it wasn't......it wasn't just any other day.......it was a very special day.......but it slipped past us without pomp....without circumstance......it was supposed to be a very big day.....but it wound up being just like any other. For the vast majority of the time for the past three months I have been living in the moment.....dealing with life on an as needed moment at a time basis....once in a while......in a great while..... my mind allows me to view things from the outside in.....I find myself looking at the breadth of my life rather than the individual circumstances that I'm currently dealing with......I must admit, it's a very strange phenomenon. I thrive on routines....when looking from the outside in it becomes really strange to realize what the current routine is. Traveling each day back and forth to the hospital, visiting my two little heroes in the Koala room.....it all seems really strange when you look at it from the outside in, but for me it is my routine.....my normal. Holding the boys, finding out and celebrating what new advancements they've made (however minuscule they may be), talking with the nurses, these are all part of my routine.......I guess that's why last Friday came and went without much notice. You see, Heather and I had September 12th burned into our brain quite some time ago.....this was the day that we would become parents......this was the original due date for Tyler and Parker to join the world!!!! This was the date that they would have been thirty eight weeks old in the womb and therefore was the scheduled date to bring the boys into the world. Well, technically they were 38 weeks on Thursday, but the doctor suggested that bringing them into the world on Sept. 11th would probably be a bad thing so she scheduled their arrival a day later on the 12th. It is just really very strange to think that the boys should have only arrived six days ago. It seems as if they have been with us forever......it seems like a lifetime ago that Heather was pregnant and we knew nothing of the NICU at UCD. It is just really hard to wrap my head around the fact that last three months were supposed to be very very different. It's hard to think about only knowing the boys for six days. It's hard to think of life any other way than what it is right now.....any other way than the daily routine that we are in......any other way than what life is right now. I guess that's why the date that loomed so unbelievably enormous for us at one point in our life simply came and went and was barely noticeable. It's hard to believe......

Lights Out!

Last night, before we were going to post our blog entry, the electricity went out. John and I had a great time finding flashlights and sitting in the dark chatting. The good thing about not having electricity? I went to bed at a reasonable hour and actually got some sleep!

Quick: Yesterday was a good day for mommy who held both boys for a long time. Parker is doing so well on his oxygen requirements and even Tyler has entered the mid 30's! The nutritionist and Pulmonologist came by to assess the boys and will give their recommendations to our doctor so we expect to hear something today when we go in. Hopefully the boys are closer and closer to getting off that pesky CPAP! Not a lot of new to report, but maybe we'll have some new info and pics tonight!

Bouncy Chair

When we arrived, look who was in his new bouncy chair? Luckily Parker enjoyed it long enough for us to get some pics. Looks like a winner to me!



Of course, since brother got a turn in the chair, Tyler HAD to have his own. He was mesmerized by the safari animals!

Ahhh...the vibration! He's been needing a massage!

Parky Giving a Look

When Parky was being weighed John snapped the cutest picture. He's either really happy to have that crazy CPAP off or he's realizing he still needs some O's to breathe. Gotta love him!

Mini Update

Because my husband is downstairs sleeping on the couch AND because many of you have written that you look forward to reading the blog each morning with your cup of coffee, I thought I'd at least write a mini update!
Today was good for Parker - oxygen level in high 20's, blood work showed CO2 in the 50's (right where it should be), and "cranky" gas level to a minimum. Mommy and Parker had a wonderful two hour hold with lots of cuddling! He stayed awake and looked around for the longest time. I fear he will be a non-sleeper because he does this a lot! The nurse said he slept a lot throughout her shift and woke up when we arrived. She thinks maybe the boys are getting used to our schedule and know when we're there. Go figure...could that be?
Tyler did not have a stellar day. His oxygen level was in the mid 30's (for him that's good), blood work showed his CO2 in the 50's (good), but his poor "cranky" level was at an all time high. The poor little guy hasn't had a good "blow out" (poopy) in over 24 hours! Eek! He's had little "smears", but no good eruption. As a result, he's just sad. Daddy tried to soothe him the best he could, but it was heartbreaking that we really couldn't do much. John DID tell the Fellow that Tyler was not doing well and probably needed "help". She was going to see how he was doing during her rounds and if he hasn't gone by then, she'll give him a glycerin suppository. Hopefully my night call to the nurse will report that he had a HUGE explosion and is sleeping soundly!
So I know this was mentioned but I must say again how amazing it is to see the boys acting like newborns. We've gone from a time when holding the babies would make them desat to holding them for comfort. Sometimes they aren't REAL comforted because of their gas issues, but at least I don't feel like I'm holding them entirely for ME anymore. I know there were days when I held the boys because I needed to, not necessarily because they needed it. Yes, selfish mommy indeed, but it was the only physical way I could "connect" with them. Not being convinced that they knew me at such a young gestation, I was determined (and probably still am) to have my boys know my hold, my smell, my voice, my everything. You can't imagine how much I look forward to the day when they are ALL mine, and I am all theirs too! No hospital, no nurses, no monitors - just us.
I guess this wasn't very "mini" was it?

Parker Cutie

Parky and daddy getting some good, quality cuddle time. Look at how content our little guy is right now!




Wow, a whopping 5 lbs. 6 oz.! You can see how huge his belly button is - this is from his hernia. Today was a good one for Parky with his oxygen down to 29% - way to go buddy!

Love seeing Parker's face - we just haven't seen enough of it. Can't wait for him to transfer to the cannula so we can finally see him without face "decoration".

Tyler Cutie

"Life is so peaceful right now, no CPAP on my face, no one is messing with me...life is good."

"Oh no...not the scale again!
They do this every night!"

Around 5lbs. 14 oz. of Tyler! Looks like he is joining brother in the surgery club - he may have a hydrocele (swelling of and fluid in the testicles) which will need to be fixed before he goes home. Everything else is well with our little guy. He was a little irritable tonight because of gas, but overall he was doing well with oxygen around 35 to 39%. The Pulmonologist came by and said he might take both boys off CPAP and on to high flow cannula! Wow...that'd be AMAZING!

Normal

September 13th

Today I was reminded of this great scene in a very mediocre movie. Sometime in the 80's Goldie Hawn starred in a movie called Private Benjamin. The movie was......let's say......cute at best. There wasn't a tremendous amount to it, but there was a scene in it that did make enough of an impression (even if the movie did not) on me that I found myself reflecting back on it today. In a nutshell, Goldie Hawn's character is a spoiled rich early twenty something that, on a whim, joins the army. Once she gets in and begins boot camp she quickly realizes "this isn't the army I joined...." ......cue the rest of the movie that basically strings together humorous anecdotes about the cultural clash of her pampered existence and the reality of army boot camp. Let the hilarity ensue.......or at least that's what the producers hoped for. The scene that popped into my head happened to be the only real poignant moment in the movie for me. The setting: the middle of the night in the pouring rain in the parade yard of the boot camp.......the scene: Goldie Hawn wearing an army green poncho and a battle helmet carrying a rifle above her head (to be honest with you I can't even remember if there were any other characters in the scene). As a form of punishment for some cultural clash with her superior, she was being forced to march in circles in the rain with her rifle. It wasn't so much the physical scene as it was what she said that I recalled. While marching in a heavy downpour she says "........I wanna get my nails done, I wanna go out to lunch, I wanna be normal again!" I wanna be normal again......this was the phrase that stuck out and beckoned recollection today. You see, every human being, to one degree or another, wants to be normal again. Take for instance a vacation. Who doesn't love to go on vacation......stay in a hotel......eat out every night......go on excursions to do fantastic things.....but at some point a strange thing happens......we begin to yearn to be on our own couch cuddled up in old sweats and a ratty pillow watching mindless TV eating cookies and milk.....to sleep in your own bed.....these are the "normal" things that we love to come back to despite how wonderful a vacation is. Today in the UCD NICU Heather and I had a moment of normal. You see we are two days shy of having spent three long months in the NICU where there really is no normal......oh we've become comfortable to a certain degree......we stroll in and completely recognize our surroundings.....there is a familiarity with physical local, but there is no normal. Just when you get somewhat settled, an abnormal brain scan result, or abnormal eye exam result, or some other test result adds yet another layer of worry or uncertainty to the hill your desperately trying to scale. However, today, there was a moment of normalcy.....as brief as it was, it was normal. Around seven o' clock tonight Parker was fussy.....actually I would describe it as pretty doggone agitated. The fact that he (or Tyler for that matter) was fussy was actually somewhat normal in and of itself.....but it wasn't his fussiness that prompted the brief respite of normalcy.....it was what happened next. Heather and I stood on opposite sides of his crib. We were going through our limited medical knowledge to assess his discomfort. We checked the monitors first to see that he was receiving enough oxygen...check......then we checked him to see if his lips were turning blue or perhaps nose or the tips of his extremities.....check, we saw no physical signs of oxygen deprivation.....check his heart rate to see if he had become tachycardic or perhaps bradycardic.....check.....and so on......you see most of the time you are relegated to simply standing by the bedside, speaking in a calming soothing voice and trying just put your hands on them ( you can't pick them up to comfort them.....too many tubes that could come undone and make the matter worse). So there we stood, wondering what physiological or neurological micro preemie underdevelpemental condition was causing the agitation this time, and what does it mean as far as long term implications. Then it happened......let's check his diaper??? So we did. We found remnants......used food......excrement....call it what you will, Parker's diaper was dirty......so we changed it.......and for the first time in almost three months normal happened. My son was agitated....not from oxygen deprivation, not from one of his two hernias, not from a severe increase or decrease in heart rate, not from abnormally developed optics........no, he was agitated because his diaper was dirty.....this was something we actually had control over......this was something we actually could take action with......and for the first time in almost three months, we were able to do something that caused him to relax and eliminate the source of his agitation. You see we've probably changed a hundred diapers between Tyler and Parker......sure we've changed them, but never before had it been the source of contention. Today, our son was agitated and we were able to do something to quell the agitation......even though it happened in the middle of the Neo Natal Intensive Care Unit, with highly qualified medical personnel present and tubes hooked up to him.....today we changed a diaper, stopped Parker from crying and.....for the first time......today for a brief moment, for the first time....things seemed normal......and it felt good.

The Weight of Ty

Look at those chunky legs! Big boy is 5lbs 11 oz!
Holy...what a chunk! Did you EVER think we'd call either boy chunky? So hard to believe!


Wha...what's going on? Hey, I don't have my CPAP on...how am I breathing?



"Hey, maybe I don't need my CPAP - I should be able to breathe on my own now, right?"

"Uh...okay, okay, so I do need my O's! I take it back!"

There's daddy in the background with Parker - good cuddle time today!

Parky's Pad!

So here's Parker's home away from home, decorated with Pooh and Cowboys. The nurses put up a mobile for Parky because he is so aware in the morning and afternoon. They turn it on every now and again and he'll watch it for a little while. We'll have to go buy one for each of the boys - now that we know they actually like them!


Couldn't tell from this pic that Parky likes watching his mobile. Ah...little sleeper!
He's a 5 lb 3 oz sleeper...yep, that's right!

Just Missed It

September 10th

In my forty years of life on this great little planet, I've figured out that whoever coined the phrase "timing is everything" was pretty much a genius. He was absolutely correct. Now I know there are those people out there that believe that everything that happens to us is pre-ordained.....really out of our control.........scripted out for us long before we ever came into being.....that could be......I've just always lived the other way.....timing can sometimes work for you and sometimes it gets ya:) Given that, I believe there have been many times in my life that "timing" has played a major role. Take for example my first job at Burger King. Only after I had established myself as a valuable employee did the manager who hired me relay this story to me. I wasn't supposed to get hired. She actually thought she was calling my older brother, who had applied there as well, in for the interview. She needed someone who could work late and I was only 16. But I was the one who happened to be home, answered the phone and went in for the interview. Once there, my dazzling charm overwhelmed her so much she hired me......or she just felt so bad that she took pity on me.....I like the former version of the story. Or better yet the timing issue of taking a promotion at the wrong time. My Freshman year in college I was brilliant enough to accept the night manager position at a different Burger King only to have most of the night crew workers quit just prior to my arrival. I spent months training a whole new crew on top of learning all my stuff. Well, timing came into play today at the NICU......Heather and I were the beneficiaries of good timing. It just so happened that our visit fell in between two times we would not have wanted to be part of. Upon arriving the entire NICU staff seems a little worse for the wear.....a little rough around the edges. We soon found out that we had pretty much arrived in the aftermath of what was a pretty horrendous day all around the NICU. The word tornado was referenced. Apparently several major events had occurred back to back to back which kept the whole ward jumping all day. Our visit was calm and peaceful and included some great holding time and cuddles with both boys. The only problem was the presence of a little orange card taped to each of the boys monitors signifying that they would be getting their eye exams today. This is not something that I will ever be present for. I've written in the past of our experiences with the aftermath of the eye exam which isn't pretty. Our fears of having interrupted time with the boys, thankfully never came to fruition. The docs, having been occupied somewhere else, hadn't made it to the Koala room by the time we left........timing. Our visit tomorrow will surely find our two little heroes completely spent from the traumatic experience, but at least today we didn't get interrupted. Timing is everything and today we got lucky and found our timing slipping us right in where we needed to be:0) I'll take it!!

A Gift that presents a Dilemma

September 9th

Today was a pretty good day. The better news is that we seem to be stringing together a few of these lately. Tyler and Parker both have seen decreases in the oxygen requirements and both continue to feed and grow.......and grow they are!!!....Tyler has lost a bit over the past two days, but is still weighing in at a whopping 5 pounds six ounces!!! Little bro Parker is......wait for it......wait for it.......now officially in the 5 pound club!!!! Yeah Baby.....over 10 pounds of twin bliss!!!! They still desat and even have bouts of bradycardia (heart rate drops dramatically), but they are continually getting better at "self resolving" which is to say they "snap out of it on their own for the most part. We spoke with yet another doctor today about the possibility/probability of long term physiological and neurological damage only to be given the same response. The probability is high, but we just won't know to what extent on either front for years......not until they start making/missing benchmarks as they grow.
That's the stuff that'll drive ya crazy.......although it's not cuz we're focused on the progress we are currently making!!! It's that progress that presents us with the gift that presents a dilemma. You see.....actually WE see a minute pin prick of a light that seems to be presenting itself at the end of that ever so distant abyss of a tunnel. We still have no idea when, but we are beginning to grasp the hope that they will actually be coming home at some point. (A few days ago we had thought that it might possibly happen for one of the boys by the beginning of October......then the phrase was used "well hopefully they'll be home for Thanksgiving:)......THANKSGIVING???? What happened to Halloween??? Thanksgiving???? who knows......all I know is that if my two little heroes are still in the NICU at Halloween, then they will be completely adored because we will be dressing them up in the cutest damn outfits ever and they'll be doing reverse trick or treating!!!! giving out candy to all the cute nurses!!!)
So the gift that is presenting itself is that of the hopeful reality of the boys coming home at some point.......so how is that a dilemma you ask??? Great question!!!! And as all good teachers do, let me answer it for you in as long and drawn out of a manner as I can. You see, from a very early point in our relationship Heather and I have had conversations about how our family would develop. We have always known that we would try and keep Heather out of work for a few months after the birth of a baby.....longer than six weeks, but that she would be going back to work. That would present us with the dilemma that is very common place in our culture today......how to provide child care for our most precious possession....in this case possession (s). Heather would drop them off on her way to work (she starts later in the morning that I do) and I would pick them up as soon as I could so as not to leave them anywhere any longer than we had to. We were aware of the financial impact and have planned accordingly. We were confident of our ability to manage the logistics. This is a dilemma people deal with all the time and we, too, would be successful.......that is until we were blessed with Tyler and Parker.....you see these beautiful baby boys are special in so many ways......the challenging special aspect that has thrown everything out of whack is the fact that both boys have chronic lung disease. Okay, so we knew that.....we knew they would struggle for several years, but could "develop" their way out of the disease.......however, we didn't know about two wrinkles that accompany the disease. The first is the common cold/flu. Babies get sick.....they get better......and this helps them develop their immune system......the problem is.....when micro preemies with chronic lung disease get a little cold it has a high probability of turning into pneumonia very quickly and in a very serious manner......so much so that they wind up back in the hospital in ICU. We have been inundated with information about how harmful and potentially deadly a simple cold can be to a baby with chronic lung disease......no matter how clean the facility......a child care center by definition has multiple babies coming and going creating a germ infested incubator awaiting underdeveloped little lungs. The second problem is RSV or Respiratory Syncytial Virus. This is a very deadly virus that the boys are highly susceptible to. Two babies in the NICU already have contracted it in the NICU's sterile environment.....imagine how quickly the boys could contract it in a child care facility that services large numbers of babies. We are investigating in home care, but are honestly petrified due to the horror stories you hear all the time of neglect and abuse that goes on once the parents are out of sight. This is the current dilemma we are facing. Heather's work has been fantastic through all of this and continues to work with her on her leave to be with the boys through this tying time.....so we aren't in panic and will continue to research a solution......it is just another hurdle to make us stronger.

Blogus Disappearus

Mommy blog - take two! There is nothing more frustrating than writing a blog and having it DISAPPEAR! I've just lost an hour of my life - can't get THAT one back! Grrrr... Now I only have the energy for a summary of stats, sorry.
Parker had a good day: 33% oxygen, feeds up to 40 cc's, chest xray showing improved lung capacity, and snuggles up to 2 hours with mommy. Rock star moves today! Tyler had a stalled day with his oxygen at around 39-45%, but he was sort of lethargic and wasn't handling our snuggles very well. I put him back after only 30 minutes and he just slept the rest of my stay. His blood work and chest xray showed nothing alarming, so I'll assume he was having a "leave me alone to grow" day.
Maybe I'll have the energy to reinact the blog tomorrow! ;o)

Parker Perspective

That's my wedding ring around Parker's forearm. When I die he will get my ring so that he will always remember how he started out life.

This is one of the first perspective pics I attempted. This is obviously my hand next to Parker

This is still my favorite picture and the one that everyone seemed to finally use to get perspective

Here is Parker today with Pooh by his side. Parker's looking out for the whereabouts of Tigger and Tyler......they like to Pounce you know:)

Here was Parker in the early days with that same Pooh doll.

Inevitability

September 7th

Tyler and Parker are fine.

Today I saw a baby die. I've always tried to keep the reality of the NICU in my mind. I've written before how one can become complacent. You get into a routine and you forget that you are in an Intensive Care Unit. Today the reality that is the NICU reared its ugly head. It was sudden.....unexpected......and then life went on. Heather and I were enjoying a good day with the boys. I had just enjoyed a very peaceful exceptional hour long hold with Tyler who rested and soaked in every minute (or at least I did....he basically slept). I was at Tyler's bedside holding his pacifier in his mouth when Heather came back from pumping. "There's a lot of action in lion room..." was her first comment. I was oblivious to it. My focus was on Tyler. Heather had gotten back from pumping just in time to start Parker's "cares" (diaper change, temp taking etc.) She had planned it that way and was excited to get started. I stayed at Tyler's bedside and began to notice the happenings in the lion room. Yesterday a 23 week old baby was brought into the lion room and was admitted right next to where Parker used to be (right where Lowell was Courtney). I had a direct line of sight to witness the event.....I probably shouldn't have. At first it was just a few people with a lot of buzz. The gravity of the situation became evident quickly. Four people turned into eight, which quickly turned into more than a dozen people running around. The team consisted of all the major players.....we've come to recognize them all. I only hope I never see them all around the boys crib at the same time. Somebody must have noticed that I was fixated on the scene, because a curtain blocking my view was drawn at some point. I didn't need to see......I've seen so much, it's amazing how I could fill in the blanks and pretty much visualize the scene. The looks on the faces of the medical staff told the rest of the story. I'd seen a large group like this once before. The energy level was similar.....lots of people running around......more than twenty people around a crib......some of them there to simply witness the event......that was an example of a new life saving device being employed in a high energy positive atmosphere that was successful. This was completely different.......somber.....focused....resolute with the understanding of the futility of their actions. Everyone in the room seemed to know the outcome already, yet still they all worked in unison to try and overturn the inevitable.......inevitable........I knew I had dodged it....avoided it......just been lucky enough to not witness it......you see I had thought about this scene many times before.....the math geek in me knew that the probability of all these babies moving on in life was a very small number......I innately knew this was a scene that had to play out sometimes......I'd been here for almost three months and had not witnessed it yet.......it was inevitable that it would happen......but would I witness it........today I did. The attending doctor came into the Koala room and sat seven feet from me.......picked up the phone and dialed........"Hello.....I have very bad news................." This was "that call"........then I noticed that most of the people had left......slowly equipment started coming out from behind the curtain........not just the equipment that had been rushed in for the valiant efforts........no.......they were removing the everyday equipment........the fact that there was no longer a need for this equipment left only one somber conclusion.....any hope that I had been holding onto was wheeled out piece by piece. The whole thing seemed like a scene out of a television drama. Time passed......Heather finished with Parker and came over......I relayed the situation......we both stood stunned......thinking the same thing.......caught between profound remorse for someone we've never met and extreme gratitude for our current circumstances. Life in the NICU......tomorrow's another day.

Did this shrink??

July 30th. Notice the sleeves rolled up and how baggy it is:)

This will probably be the last time he wears this outfit. He has actually outgrown something:)

Perspective

This picture was taken on June 30th. Tyler was one week old. The next pictue will give you some perspective on how much he has grown.
This picture was taken on September 5th. Tyler was two days shy of 11 weeks old. Plus it was just a really cute little dragon outfit:)

White Knuckles

Not his knuckles, but look how white Tyler's fingertips are!


He was gripping my finger so tightly, that his little finger tips were white.

Parker Chills

Lately we've had to "tuck" his arms in his swaddled blanket to make sure he doesn't pull out his CPAP.

Despite having pulled it off multiple times, I finally gave in and let him have an arm out. I tried to "tuck" it in after he fell asleep, only to have him wake up and get mad:)