Tuesday, September 11, 2012

No title, just lack of sleep

We're on week 3 of 4 hour time slots. That is pretty much how you end up looking at things, what can i do, or how much can I sleep before the next feeding?  L'il Lobot is being relatively consistent and cooperative. He mostly only cries when he's hungry, although there have been more than a few times lately, especially at night, when he'll scream bloody murder and the second you walk in the room, without speaking or touching him, he'll stop crying and will either be asleep (possibly pretending to be asleep) or just lying there seemingly without a care in the world. Clearly life at this point is incredibly boring, there's only so much you can get out of a mobile and the stuff we talk about with him is not debate level conversation (food, poop and sleep dominate both his existence and the banter). He seems to be gaining strength to lift his head, so some serious tummy time will hopefully broaden his horizons.

The first born and heir to the elliot empire is proving that he can be both super awesome and evil to the point of mom's patience. He's really enjoying school, seems to be making friends and growing in all aspects.  The school, although only two days a week is helping him socialize and be around other kids, which he desperately wants. He asks a lot when we're at home if various children that he's met can come over or if he can go to their house, mom and dad aren't cutting it like weused to I guess.  Speaking of school, Thomas had his first homework assignment and mom and dad got to "help" with said assignment, leading us down the path of doing his homework for him for years to come.  The assignment was to take a cutout of a doll and decorate it so it looks like you. So mom and Thomas went to Michaels for supplies, dad taped off the area for a shirt and pants with painters tape so that Thomas would color in the right areas and we all used glue and yellow crinkly paper for the hair.  I think Rebecca and I did a great job.  Thomas helped too. I'll post a pic so you can see for yourself. 

The flip side of Thomas' irresistible cuteness is his desire to do bad things at times and use his cuteness to get out of it. Case in point today, Thomas did a few things that mommy asked him not to do. Mommy put him in timeout. Thomas smiled and said "I'm in trouble." he then tried to hug and kiss mommy several times to get out of timeout.  We're at the point where Thomas is pushing his boundaries (or possibly just blowing right past them) with little remorse. We haven't unlocked the key to Thomas minding us yet.  Unlimited amounts of candy just isn't working. 

Tuesday, August 28, 2012

What's it like outside?

Semi-tired and way behind on catching you up if you're out there.  We made it through the first weekend.  Overall it was ok.  We didn't exactly leave too much, but we survived.  William was extremely accommodating really.  He's currently eating every 4 hours and pretty much sleeping in between.  Despite mostly tiptoeing around (aside from Thomas singing at the top of his lungs), William is a very sound sleeper.  Its one of the benefits of spending your formative weeks in the NICU, its not a quiet environment really.  Lots of movement, lights and sounds, so William is pretty oblivious overall.  The first couple days, we kind of divided and conquered.  I took Thomas who is a Tasmanian Devil while awake, but sleeps through the night and Rebecca took most of the feedings and tried as best she could to get naps in when William slept.  Worked out relatively well in that we were both exhausted.

All that being said, we're still on pins and needles anytime he makes a weird noise, or doesn't make any noise at all.  Its kind of funny that noise is bad and no noise is worse.  All my old worries come back to me.  I get paranoid holding him and walking, that I might somehow misjudge a doorway and accidentally bang his head or something (which has not happened with him or Thomas yet). 

Today was a big day for both Thomas and William.  We'll start with Thomas (it is his blog I suppose).  Rebecca's mom has graciously come into town to help spell us and let me travel a little for work.  She and I took Thomas to his new school (which if you recall I spent the night at to get him in.  You can see that story in the archives back in February) to meet his new teacher and check things out before he starts next week.  Its a big deal because Thomas is still playing catch up.  He doesn't get near enough opportunity to be around other kids and the joy that he gets being around them is infectious and to me, a little sad.  I say that because he is so excited when he gets to be around other kids (especially girls) that he can almost be a little intimidating.  He just wants to be friends and have a good time with any and everyone and I cringe that some child isn't going to reciprocate his friendship.  Fortunately for Thomas, nothing fazes him like it does dad and he just stays happy as can be.  I think school is going to be really good for him, but I will be very sad when he loses his innocence.  I need to not dwell on that, but you know, I'm a parent, so its kind of like impossible.  Thomas really seemed to like the school and the teacher, so I think things are going to work out well.

Now about William's big day.  As you probably know Rebecca and I are huge Star Wars fans and of course the convention is coming and with Thomas' hair cut he naturally lends well to a luke skywalker look, but what to do with William?  We've got two ideas and we're at a loss for which direction to go.  We went to a make up artist that specializes in these sort of things to give us a base layer that would keep our options open.  In the first pic, you can see William with the special implants.  So we're either going to go with pic 2, which of course everyone recognises as Lobot, Lando Calrissian's assistant in the Empire Strikes Back, or we could go for tried and true and go Princess Leia.  Thoughts?  He's got the scowl pretty much nailed I think. 
 
 
 
So, maybe that's not exactly our intention.  At the same time as my visit to the school, Rebecca took William to his first doctor's appointment outside of the NICU. This one was to a specialist.  William has a floppy ear, which is awesome if you're a dog, but in the long run, probably not a great look for a boy/man.  William's cartilage in both ears is underdeveloped (side effect of early birth).  So typically at some point William would have to undergo surgery to repair his ears.  There is another option that's relatively new, William was fitted with molds basically to help shape his ears correctly.  He'll have to wear them for about 6 weeks, but this is ultimately more preferable to surgery.  He's not in pain and was asleep relatively quickly when he got home.  You hate having to do these things and making these sort of decisions.  One day Thomas and William may read back on this blog and be shocked by all the crap they had to go through, but hopefully this will make William just that much more attractive down the road.  Unless of course William takes up wrestling and develops cauliflower ear and then it'll be all for not. 

Friday, August 24, 2012

One last trip to the NICU...I mean it!

Its Friday night and we are 12 hours into the whole second born child thing in our house, which means we still have 12 hours to decide if we're going to keep him if I read the return policy correctly.  Things are going very smooth, but you just know once that 25th hour hits, things will start to go all kinds of wonky.  And good luck trying to buy an extended warranty...

So we made the trek down the same road we drove daily for almost 4 weeks and for a better part of 6 months a few years ago and I won't say I got nostalgic, but its so weird to basically drop a place and a set of people that have been such a significant part of your lives cold turkey.  I paid attention to the road we always drive down, which is very straight and filled with a mix of low income apartments and fairly large mansions that were probably the place to live back in the 40s and 50s, at the parking lot that I always preferred to park in, because sometimes if you left it after midnight (which I did often), the gate was sometimes up and you didn't have to pay to get out.  When we walked into the building to go up to the NICU, I looked down the hallway to see if the popcorn vendor was there creating the irresistible smell that I rarely passed up (sadly they weren't).  On the elevator, I took in the strong smell of antiseptic or some such, a distinct smell that probably reminds anyone of a hospital, although I think each hospital has its own scent.   When we got off the elevator, one of the NICU nurses who'd been with us both times was right there, happy to see us.  That's the weirdest part and I remember how weird it was the last time.  These people who are there taking care of your child and sharing your first experiences, fears and joys are kind of just go by the wayside.  You barely get to say proper goodbyes and thank yous to all of these people (that's if they happen to be on the shift your leaving in).  In some ways its probably a little better for them, maybe?  Those babies and the families that surround them just keep coming and they probably don't need to get hung up on a bunch of farewells.  Its just weird though.

When we got Thomas, it was a fairly long ordeal.  We had to spend the night in the hospital to prove we knew which end the food went in and that we were completely self sufficient (even though we were a button and 10 steps away from a team of trained professionals), and then had to wait hours to get discharged.  As with the rest of his life, William was gypped or spared all of the pomp and circumstance.  We were there for about 30 minutes, I signed 3 pieces of paper and we were escorted to our car.  Wam bam thank you ma'am. 

So now we're at home trying to figure out which cry means what and make sure he's comfortable and relatively happy.  I think we're only semi successful, but we're getting there.  I'm sure it'll be a long night. 

Not to be outdone. Thomas issued two super cute statements.  The first thing he said when he woke up this morning was "Go get William from the Hospital." , a good sign.  When we all got in the car and Thomas was sitting next to William for the first time, he asked "William, do you talk?" followed by "I want William to talk to me."    

Here are some pics from the day.  More tomorrow when we're really on our own.


















 

Thursday, August 23, 2012

Where did I leave that claim slip?

So its semi-official (its only official when we're actually in the car), tomorrow morning we're going to collect Son #2 form the NICU and bring him home.  Very exciting stuff indeed.  Of course once the excitement wears off, th blog is semi-dormant again and its 3am and William has woken up Thomas and they're both demanding our attention, I'll try and find a moment to capture how I feel about things then...

Updates and pics will be on their way tomorrow.

Tuesday, August 21, 2012

Panic!

Rebecca is on her way to the hospital with the car seat to do the car seat test.  The car seat test is a test to prove out that a baby can sit in a car seat without any entertainment or ability to move around on a road trip with out complaining about being hungry, needing to go to the bathroom or asking if we're there yet.  To date, not one baby has passed this test.  I just don't know why they bother, I think I'll blame the government. 

Actually the test is to make sure they can sit in the car seat for an hour and breathe.  This is one of the final steps before William gets his eviction notice.  They pulled his feeding tube this morning and we're in DEFCON 4 mode.  I really hate the suddenness.  It was the same way with Thomas.  We want William home now, but then the moment of reality really throws you.  I think its kind of a great trick that they play.  Everyone tells you it may be a week until at the very last moment, they say now!  No amount of preparation will be enough to get you ready for a helpless being that will occupy all of your time, but you still want some certainty, a solid date and time for release.  Oh well.  We'll let you know soon what the verdict is.

Monday, August 20, 2012

Where did the week go?

Sorry, didn't realize that its been close to a week, but the days and nights are blending together a little.  Very tired these days, probably almost as tired as Rebecca, who is having to wake up every 3 hours to pump.  Its an incredible beating on top of trips to the hospital, but fortunately I haven't noticed a hint of grouchiness from the sleep deprivation...nope...not a hint...  I think I may have mentioned this in previous blogs, but I'm quite certain if the roles were reversed, the Elliot lineage would not extend beyond me. 

Alright, so its Sunday night, I'm sitting cribside in the NICU again.  Which despite the late hour, I like. Its kind of counter-culture and quiet.  Unlike late night eateries, emergency rooms or 24 hour gyms, the nurses aren't creepy zombie-like beings.  They are always cheerful and seem to love their gigs as much as the day folks.  I still don't know how they do it.  The babies just keep coming and coming, and then of course leaving.  The amount of care and effort that they have to put into taking care of their charges probably for the most part goes unsatisfied.  The babies certainly aren't lavishing enough thanks and once you leave this place, you pretty much have to bring in another one as cover charge to get back in (security is rather tight). 

So in a weird way, that's been a good side effect of the latest stay.   We've seen alot more folks than we thought we would, or initially remembered.  They all remember Thomas and I think the few times that Thomas has come up has been neat for those that have happened upon him.  He is a bit of a ham and seems to enjoy the attention.  Its also a reminder of how lucky we probably are.  Thomas' NICU pediatrician reminded Rebecca that Thomas is a walking miracle, based on his situation and the surgeries that he had to go through, that he's come this far is astounding and against the odds.  Its something I don't like to dwell on, or ponder one way or another.  I'm immensely grateful for having Thomas and for how well he is doing and I kind of like to just leave it at that.  Miracle is such a big and powerful word and somewhat overwhelming and even though it is undoubtedly a miracle that he has not only survived his journey so far, but in most respects has exceeded expectations as to where he should be, I don't want Thomas to feel undue pressure to be any more special than he already is, which is significantly special (at least to me).  Hmm, late hours may not be that great for blog writing after all, very deep and significant sentence that will probably sound silly and over thought tomorrow when I reread it.  Oh well, I had my backspace key removed for just such a situation.  I just know we're incredibly lucky, twice over now. 

Three paragraphs and I haven't really talked about William, how self indulgent.  Good thing I don't have an editor, he'd probably say: "You're burying the lead, get to the hook, and you need to cut 50 words."  Actually Rebecca does edit in post production on occasion.  If she doesn't laugh at my witty and insightful observations and comments, then I pout and stop writing for a while, so blame her if there's another delay before the next blog.  OK, seriously, William, Kid #2:

William is just about 5 pounds!  Which is awesome.  There's a distinct possibility that William will eventually be bigger than Thomas.  He's also feeding from a bottle about every other other feeding.  We are hoping that he will increase to every feeding soon.  This is the final hurdle to William coming home and us just being very tired as opposed to extremely tired. 

William speaks!  We do have video footage of the first real communication of William.  It can be found here. 
http://youtu.be/5SKmTZN3Uzg
I think the funniest part of the video is mom's face.  I' not exaggerating when I say we're not used to this noise.  Thomas just never did this and so I think some thing's wrong with this one.  I'll have a word with somebody around here to get this straightened out. 

Here are some more pics, including both granddads with William and the gratuitous Thomas shot, per his contract with the blog (its kind of like the Oprah deal with her magazine O, I'm obligated to make sure he's represented in every blog.  He also gets a bowl of fruit gummies, purple only).






Pop also came across from Shreveport today to meet William today.  He and William had a great conversation, which you can see here.   http://youtu.be/sCuxGlcoLoM

Wednesday, August 15, 2012

Tuesday night 11:30pm

I'm sitting here in the NICU jamming out to a little Madonna in the background (no I didn't choose it, but all of the babies seem to prefer it to the normal NICU noises.  Plus its old school Madonna, which will hopefully leave an impression and appreciation for music of old when William is into whatever preemie kids are into these days.)  I just fed William 29 CCs of milk, which is a medical abbreviation for Chubby Cheeks (which of course is a semi-inexact measurement that approximates the number of times a child fills up there cheeks per bottle).  We also weighed him at 4 pounds, 9 ounces. 

So William is in an open crib now, which makes him much more accessible for random pick ups and holdings.  He's wearing little pjs and is swaddled the majority of the time for warmth.  We're also not measuring as much now, just basically heartbeat and respiration.  My parents are in town and we've all taken turns coming up here 2-3 times a day to feed William, which is one of the last steps to him coming home, which may be happening sooner than later.  That's what Rebecca found out today, that William might be ahead of schedule and it gave a moment of panic, "The I'm not sure I'm ready to do this full time without a team of nurses and expensive equipment around."  Much like a regular baby, there's not really a huge set of directions that come with the child when they boot you out the door.  We went through that panic with Thomas, so far everything has worked out ok on that end, so I think we'll make it. 





They're going to check his kidneys one more time and if that is clear and if he can consistently take a bottle at each feeding, as opposed to taking it through the feeding tube, we'll get our walking papers soon.  (We're onto Snow Patrol now on the radio, which has his William's eyes open, but I can't read his interest level).  William appears to be a night owl, which Thomas was too I believe.  Its tough to figure out night and day in here, so hopefully we'll be able to get him on a normal schedule.  (Katy Perry and wide awake, hmm...)



Its after midnight now, so I may sign off for now.  Its very tough to leave his bedside, though.  Its very tough to balance the time between him and Thomas.  Thomas is still very dependent and require a watchful eye.  What a great segway to fit in some pics of Thomas... (Hotel California and William is dosing off, sorry Pop)

Wednesday, August 8, 2012

I'm from Southie, What's it to ya?

Tuesday night and I'm in Austin playing absentee dad.  So I have limited access to photos and I'm in a hotel room feeling bad about Rebecca having to take the brunt of the home front responsibilities.  So a couple things to catch you up on.  First, Thomas (Freudian slip, I obviously meant William, just force of habit.) has been moved to the South Hall, which is the same hall Thomas was in before he left the NICU.  He's no longer on an IV, which is much more appealing aesthetically, he's feeding every 3 hours and he even took a bottle for a little bit today.  On top of that, his neuro scan came back negative, so there's no sign of brain bleed, which can be common with premature births.  So everything looks really good so far.  I'm cautiously optimistic, but we're both worried about the other shoe dropping.  Force of habit from the last time.  There's nothing to worry about though.

We're also both very tired, which is to be expected and I think Thomas knows something is up and is acting out a little bit.  I'm a little concerned how he'll handle either of us holding William, but we'll cross that bridge eventually. 

Full disclosure.  Last week I was inspired by Rebecca and was lucky enough to get it recorded.  http://www.youtube.com/watch?v=kPgPrtOxvK4    Pregnancy took a little out of her, but I think I look pretty good. 

Anyway, since William was doing so well, the triathlon was in Shreveport and we were able to convince Rebecca's parents into seeing Thomas again, we did a real quick overnight so I could go ahead and get in a selfish indulgence, Rebecca could kind of rest and Thomas could be smothered with attention and meet his new cousin Kate.   So we went and visited William Saturday morning, scooted over there and scooted back Sunday night and saw him again.  Win, win, win?  It was fun but it certainly added to the exhaustion.  And no, I did not win...but I'm pretty sure everyone that finished ahead of me cheated. 

The other bonus has been the near daily reunion at the NICU as we seem to know alot more of the staff than I thought, or probably more to the point, they all remember Thomas.  So that's been pretty neat.  Many of them also think William really resembles Thomas.

Finally, we may have 2 decent milestones this week.  Open crib and clothes!  William may get an upgrade to the crib in the next couple days.  We'll see and let you know.  Two more pics for you.

Thursday, August 2, 2012

Thursday evening

It is amazingly tough to keep up with documenting life when life doesn't let you take a break.  The last time we did this, I didn't have as much to do after we would get done visiting Thomas and I could just type and type and indulge myself with humorous anecdotes.  Now when we get back from visiting William, Thomas is there ready to be entertained.  I'm sure it will get much better once they're under the same roof. 

Believe it or not, Rebecca thinks William is super cute.  We're also playing the game I absolutely abhor: "which body part of William's looks like each of us?  Its an never-ending, constantly changing game.  So far I'm only claiming his left pinky toe. 

So, speaking of William (classic segway), you know that IV that they had to move from his arm to his leg and then put a shield over?  Yeah, that didn't work.  Its now in his scalp, taped down where he can't get at it.  We're also getting into the nit picky aspects of the NICU, where they get past the initial big picture item of sustaining life and stuff.  Then each day you visit, you ever know what little surprise awaits you.  The IV being a good example.  He's also got a little jaundice, which gets him some daily tanning bed action.  He's also got a little fat deposit on his back.  It could be just a hemangioma, but they're keeping their eye on it.  They're also watching his kidneys.  They had noticed that they appeared to be blocked up when we were doing sonograms, and they still appear to be.  Hopefully this will clear itself up.  Monday is the day they do the neural scan to make sure that there wasn't any bleeding as a result of the early child birth.  We're not expecting anything there either.  Its just all these little things to keep you on your toes.  Nothing to worry about though. 

Below are some random shots, including William getting his tan on and a guest appearance by some other kid that demanded some of the spotlight.








Tuesday, July 31, 2012

Tuesday Evening Update

So, we're attempting to get back to some semblance of normalcy, while at the same time walking down memory lane.  Rebecca came home yesterday and is recovering well.  She's tired, but excited to be home and to not be nearly as beat up as the C Section 3 years ago.  Pumping every 3 hours is not helping catching up on sleep,

We've also started the twice daily trips to the NICU, which is thankfully relatively close.  William is doing really well.  They've doubled his feeding amount and taken him off of the oxygen.  We've seen lots of the same faces from the NICU staff that were there the last time and its been a little surreal going through this again.  There isn't as much anxiety as the first time and I certainly don't want to make light of the fact that William is in an Intensive Care Unit, but he's in much better shape than Thomas was when he was there and to this point has been relatively trouble free for the NICU staff.  He is a fighter though, if you mess with him, he'll start kicking and flailing his arms.  He seems to already have some strong opinions on what is ok and what isn't.  For instance, IV?  Not cool, I'm just going to pull that out.  So now it is in his foot rather than his arm and subsequently a shield has been placed over thatto prevent further tampering.  Also not that cool, the feeding tube stuck in his mouth.  He's tolerating it, but he has managed to remove it a few times.  But again, relatively speaking, he's an easy patient, which is always good, as there are other patients that need a little more attention. 

That was the thing that really struck me and took me back when we first started visiting the NICU again.  You can see it right away in certain parents' faces, its the helplessness and complete lack of comfort that they are experiencing.  The NICU is a scary place if you haven't been there before.  The machines that they hook your child up to are huge, they beep incessantly and the whole set up is about taking care of the babies. The parents are just bystanders and the NICU staff doesn't have time or the right to tell them that things are going to be ok, because unfortunately, sometimes they aren't.  Every time I see that look though, I want to tell them about Thomas and let them know that it can be alright.  Not really allowed to do that though.  I'm certainly not an outgoing person in that manner and its also a very personal and private ordeal that you can't intrude on without being invited in.  Anyway, that's what I don't like about the NICU.

Tonight I visited William for a good amount of time whole Rebecca rested.  Took his temperature and changed his diaper.  He weighs 3 lbs, 12 ounces, which always happens, they lose a little bit.  Then I did kangaroo care with him, which if you will recall from 3 years ago is the process of teaching him how to box like an Australian.  I might have gotten that wrong, it has been a while.  You do hold the child against your skin to allow him to stay warm with your body heat and connect with you.  He woke up and stared at me for a while and then settled in and slept on my chest for about an hour.  When I put him back in the plastic box, he let me know he was not happy about it.  I'll be curious who gets their way between William and Thomas.  I think we're in for some battles.

I know there are people that are more interested in pics than my ramblings, so I'll post some more in the morning.