Thank you, Thank you, Thank you!

Not to be trite, but we have a lot to be thankful for this year.  Lily is rolling right along and doing better and better by the day.  She was weighed this morning and sometime in the past few days has broken the five pound barrier.  As of this morning she is a whopping 5lbs, 6.5oz., and 17 inches.  She is now up three pounds since birth and well more than double her original 2lbs, 6.3oz.  She is starting to fill in a little and has some rolls here and there (nothing like her dad, but I had a head start).  In the past week or so, Lily has been awake more after her feedings, and is beginning to look around and track a little bit.  During our home visit with our community health nurse today, she described Lily as the lowest risk of the high risk babies she sees.  Her stroller just arrived today, so we're looking forward to her first venture to the outside world, so far she's only heard rumors.  We are also ever thankful to Gramma Roz, who has been here the past week and allowed us to get gads of sleep.  Thanks mom, and Happy Anniversary to you and Dad!

When we were in the hospital speculating when Lily would come home, I said if she were home by Thanksgiving I'd cook for three days.  Yesterday was Chocolate Chip Pumpkin Cheesecake, today was Cornbread Stuffing, and tomorrow is Green Bean Casserole, and then we feast!

Enjoy your first Thanksgiving, Lily!  Too bad they don't make turkey flavored formula.

Don't Forget To Breathe.

Pictures of Lily

Just a quick update and some new pictures.  Zantac is our new best friend.  Our pediatrician gave us a prescription for Zantac the other day and it has helped tremendously.  Lily has a lot less discomfort and is sleeping much better after eating.  She also met her other Gramma yesterday when my mom came in for a visit.  Gramma Roz accompanied us to her follow up appointment with the nutritionist, where we were able to get her newest stats: 4lbs, 13oz, and just under 17 inches.  

And now, here are some recent pictures... Enjoy.

Sleeping Beauty    11/14/08

Pretty in Pink    11/19/08

My girls    11/19/08

Tell it to the hand    11/19/08

My mom, my wife, and my daughter    11/20/08

Gramma Roz and Lily    11/20/08

Don't hate me because I'm beautiful    11/21/08

Proud Gramma    11/21/08

Don't Forget To Breathe.

Random Thoughts, Pt. 1

Since leaving the hospital, Lily has been weighed three times.  Her last day in the hospital, 11/8, she weighed 4.3.5. 

11/10  4.4

11/13  4.8

11/17  4.9

We're told we shouldn't worry about the slowing in weight gain, it's probably due to environmental changes, adjusting to life out of the NICU.  There could also be minor discrepancies in the scales being used.  Either way, we're not too concerned (at least the me of we isn't).

After a recent post where I said I sometimes worried in the middle of the night if Lily was still breathing, I got a lot of good advice and stories of similar feelings.  I no longer have to worry about that, as Lily's reflux and gas are now constant reminders to us that she is still breathing.  Those of you with kids may stop laughing now.  Those of you who don't have kids yet, bookmark this page and re-read it when you bring your newborn home from the hospital, then we can all have a good laugh.  Lily's has been a fussy little baby of late, and sometimes takes a good hour to an hour and a half to go back to sleep after eating.  My sleep bank has been readily depleted, hence the shortage of recent posts, but I'm enjoying walking around in a zombie-like state and finally having a legitimate excuse.

We have received so many gifts, Lily now has more clothes than I do.  We may never have to go shopping for her again.  Seriously.  Thank you.

Time to go mix up a fresh batch of formula.

Don't Forget To Breathe.

A Birthday Wish From Lily

Happy Birthday Gramma Roz! You have always been one of my two favorite Grandmas. I hope you have a great birthday and have a nice dinner at Beau Jacks. I can't wait to meet you next week! Keep in touch, you're just like family (daddy told me to say that).

Oh, and Gramma, Don't Forget To Breathe.

At Home With Lily

We've been home four days and still haven't found the owners manual.  We have found a little routine, however.  Maybe you're familiar:  Sleep, cry, change diapers, feed, repeat.  Lily spends most of her day sleeping in the bassinet next to the bed or kangarooing with Amanda.  Amanda spends most of her day hanging out on the bed next to Lily's bassinet or kangarooing with Lily.  I go to Starbucks, walk Pearl, run errands, feed Lily a few times a day, and have even been able to get back to the gym recently.

After all the practice we had in the hospital with the nurses support, we were pretty sure we were ready to take care of Lily, until our first night at home.  After her first middle of the night feeding, we couldn't get her back to sleep.  Typically, she had been falling asleep within minutes of eating, now that we were home, not so much.  We (and by "we," I mean Amanda) eventually did get her to sleep, and have been figuring out some of her idiosyncrasies as we go.  She seems to have a little reflux, which is common in preemies, and we discovered that if she is put down on an incline it bothers her a lot less.  We have since found that it's even better if she is on an incline while she eats, rather than lying flat, and have been having good luck with that.

While it's great having her home and not having to go the hospital everyday, there are a few things we got used to that are hard to give up.  While Lily was in the NICU, we had a ritual of calling first thing in the morning to see what her weight was and how much she had grown from the day before.  Now that we're home and don't have a scale accurate enough to weigh her, we'll only find out her weight once a week or so, and after obsessing over it for four weeks, it's a long wait.

We also got used to having Lily monitored 24/7, so it was a bit disconcerting to get home the first night and not be able to see her heart rate at any given moment.  I'm o.k. during the day, but at least once a night I have woken up wondering if she's still breathing.  So far she has been every time.

And of course we miss the nurses.  Not only  were they amazing with their care and wealth of information, but we became friendly with a few of them.  There have already been numerous times when I would have liked to consult one of them for one thing or another, it's difficult to give up a crutch once you get used to leaning on it.

Well, it's nearly midnight and I'll probably have to feed Lily in an hour or two, so...

Don't Forget To Breathe

Homecoming Queen

To the one person (Kelly) who voted in the poll that Lily would be coming home no later than November 8th, congratulations!  After 29 long days in the NICU, Lily has proven to the medical staff that she is ready to be cut loose form her tethers and finally meet her big sister Pearl.  Yesterday she spent ninety worry-free minutes in her Chicco KeyFit 30 car seat, and a few hours ago she was discharged from Overlake Medical Center.

Lily taking her car seat test

She won't be outgrowing her car seat anytime soon

Lily's "Diploma" from the NICU

Wireless, and dressed to go home

The three of us are now at home in Issaquah, and Lily is on the bed with us as I write this.  Her official time of arrival at home was 9:15pm, November 8, 2008.  28 days, 12 hours, and 54 minutes after her birth, but who's counting?  She was born at 2lbs, 6.3oz, and went home at 4lbs, 3.5oz.  Her gestational age is 36 weeks exactly.  For those of you wondering, yes, she fits in a car seat.  I picked the above mentioned seat because it's one of the few seats on the market rated for four pounds and up.  The trip home was uneventful and she has pretty much been asleep since arriving, nonplused by her new surroundings.  

Not an outstanding photo, but she's home!

As for us, Holy Expletive!  We've got a baby at home!  And there are no nurses here, no monitors, and no wires.  What now?  I guess we just start taking care of her and find out if the rumors are true about never sleeping again.  Now, I've been waiting a long time to test out an experiment I've been working on.  It started in college when I started sleeping all day instead of going to classes hoping I could bank my sleep hours for future use.  It continued in my pre-marriage freelance years when an average non-work day consisted of: sleep.  By my calculations I should have enough sleep stored up to last me approximately 11 years.  We'll find out soon enough.

Amanda and I are so thrilled  to finally have Lily here with us.  It is at one time the end of a long, grueling journey, and the beginning of an exciting, life-changing adventure.   Just to lay here and hold her after our odyssey is a gift I will be ever thankful for.  I was holding her and watching her sleep, and just staring at her beautiful face, and couldn't believe she finally made it home and our little family is together.  

My three girls

I find it nearly impossible to express my thanks and gratitude to all those who took part in her care the past four weeks, and for all they have imparted to us, they are a truly special group of people.

Don't Forget To Breathe.

Worth 1000 words.

Keeping Up With Lily, Part 2

Once again, things have progressed with Lily faster than I've been able to blog.  I am normally a world champion procrastinator, but even at my most diligent I'm having a hard time keeping up.  They took Lily's feeding tube out a few days ago because it was irritating her breathing.  Preemies are often nose breathers, and Lily was quite sniffly.  The plan was to put it back in when she needed it, but she has taken all her feeds by bottle since then.  I know I have described her as a rock star in the past, but she has gone from driving to gigs in a mini van and playing in smokey bars where you can hear the crowd over the music to flying in a private jet and playing to sold out audiences in stadiums that have been specially built to accommodate her massive crowds.  She's just not wearing the leather pants yet. 

Amanda and I are furiously getting the house ready, crossing our T's and dotting our eyes, I mean "I's."  We are crawling out of our skin in anticipation of bringing Lily home, and see the light at the end of the tunnel.  God, I hope that's not a train! 

Also, I'm sorry I haven't had a chance to post this yet, but Lily was thrilled with the election results.  We watched the coverage in the room with her on my laptop, and it was so amazing to be with my wife and newborn child to see the color barrier finally broken in this country.  When I grew up, we were told we could be and do whatever we wanted; when Lily grows up those words will have meaning.  When I grew up we were told all men are created equal; when Lily grows up those words will have meaning.  I know we still have a long, long way to go in this country to erase racism, sexism, nationalism, and intolerance of so many different kinds it makes the head spin, but to think of how different a world Lily will grow up in than the one I started out in a mere two years before the assassinations of Martin Luther King, Jr., and Robert Kennedy can't help but to instill a sense of hope that I haven't felt for a long time.  I always tell Lily, treat the universe well, and the universe will treat you well.  I sure hope that's true.

Don't Forget To Breathe

11/4/08  I took Lily and MLK into the voting both with me

11/5/08  

11/5/08

Class Dismissed

Before we found out Lily was going to be delivered early, we had been taking childbirth classes at the hospital.  We were going two hours a night on Wednesdays for seven weeks.    Most of the early classes focused on signs of labor, what to do when you feel contractions, what to do when your water breaks, how to relax when having contractions, and what to expect when we go to the hospital to deliver.  The usual childbirth drivel.  When we found out about the IUGR and the certainty of a C-section, we stopped attending.  Our last class would have been tonight.  Lily is 25 days old today and when I think about those classes it seems like years ago that we sat there and practiced breathing.  In some ways I'm thankful to have Lily here early, and feel fortunate to be able to watch her grow, care for her, and bond with her.  In other ways it's been a difficult journey that I wouldn't wish for anyone, but one that has given us otherwise unknown joys to see how well she has met every challenge she's faced.   I hope all our former classmates have great birthing experiences, and bring home beautiful, healthy babies.  But sitting here with Lily the past three and a half weeks and seeing the doctors and nurses gush over her progress each day is something I would never trade.   Some things you just can't teach.

Below are some pictures I took yesterday while Lily was sleeping with Amanda.  

Don't Forget To Breathe.

The $64,000 Question

Lily  11/2/08

Everyone keeps asking us, When is Lily coming home?  The short answer is: we have no idea.  The long answer is: when she meets all her criteria for being ready to go home.  The common misconception is that she has to reach a certain weight before being released,  but really, there are six main criteria Lily has to meet before she gets her hall pass:

1.  She has to be able to breathe on her own.  Done.  Since birth, Lily hasn't needed any oxygen or other breathing assistance.

2.  She has to be able to maintain her body temperature in an open crib.  Done.  Since 10/29 Lily has enjoyed freedom from the enclosure of her isolette, and has maintained her body temp the whole time.  

3.  She has to all take her feedings by bottle or breast for 24-48 hours.  This is her next big hurdle.  She's fed every three hours, and is currently taking bottle feedings three to four times a day.  When it's time for her to eat, we look at her for signs of being awake and alert, signs she is ready to suckle, and if she is we give her a bottle, or try to breast feed.  They also look at how long it takes her to take the whole bottle, as it shouldn't take more than 30 minutes.  The other day I was feeding her and she fell asleep about half way through with the bottle in her mouth.  Yesterday, Amanda was feeding her and she took a whole bottle in six minutes.  It's just a matter of maturity, and she is still considered just over 35 weeks gestational age, so she's doing great.

4.  Lily has a few wires attached to her at all times that measure her heart rate, her respiration, and her oxygen purity, and we can see all these on her monitor.  Whenever one of these goes out of range, the monitor beeps, and this is called a monitor event.  They are usually nothing to worry about, it's common for babies to stop breathing for a moment or two, and sometimes it can be caused by something as simple as a burp or a hiccup. In order to go home, though, Lily must go five days without any "significant" monitor events.

5.  Her final test is to be safe in a car seat or car bed (Yes, they make car beds for the little ones!).  When they think she's ready to go home, we'll have to bring in our seat or bed, with the base, and they'll put her in it for 90 minutes.  If she doesn't have any monitor events in the car seat, doesn't turn blue, and appears to be ok, she is ready.  Finally!

6.  I said there are six criteria, and she only has to meet five.  The last one is on us.  They won't let us take her home if they don't think we're ready to care for her.  That's why we've been doing most of her care here in the NICU.  We take her temperature, change her diapers, change her clothes, feed her, and wash her.  They'll send us home with nutritional information, a schedule of return appointments, and a litany of other helpful info, then it's Hello, Issaquah!  I hope she likes the rain.

As you know from reading Lily's Growth Chart, she has been gaining weight steadily.  The nutrition specialist was going over her grid with us today, and said in seven years of working with preemies, Lily is the first one she has ever seen meet all her growth goals from day one.  She is now "on the grid" at the 3rd percentile for her age.

Don't Forget To Breathe

Lily's Real Growth Grid

At birth she was below the 3rd percentile in weight