Been a While... Here's What's Been Going On...

Hi everyone, and welcome back after a very long hiatus.  Sorry I haven't updated you, but it's been very busy for us.  Since Alexandra's much welcomed homecoming, we don't have as much free time, so we have to pick and choose what we don't get to (if you're a parent, I am sure you can empathize).

Since it's been a while, I figured I would break this into two sections.  One on how Alexandra is doing, and one on how life is around here.

Alexandra's Progress
She's now six months old and doing well.  Okay, she is doing VERY well!  She's almost updated on her vaccines, which is great since we're moving deeper into flu season.  All of her checkups have gone well except one little hiccup (more on that in a few moments).  Her weight and length are progressing very well.  We routinely get a shocked response from people who meet her and know about her history... When you see her, you really don't see anything out of the ordinary at first... and that is just how we want it!  She is very full of personality and is starting to coo a lot.  Certain words we say can keep her entertained for hours (we know because we do it!).  She's been known to capture attention of strangers in elevators and in lines for the valet.  It seems everyone gets mesmerized by those deep dark eyes!!!

Life Around Here
We once posted an update about life with your kid in the NICU.  Life at home is not so hard as that; but it may just be equally draining.  Alexandra requires one person to be alert and at her side at all times; two is even better.  This is as true at 3 am as it is 3 pm, so someone has to be awake in her room all night.  The reason is simple; she still gags quite hard and needs help to get through it.  You can do it with two hands sometimes, but you really need four hands.  Someone has to hold her upright and pat her back to loosen the stuff she is choking on.  The other person has to stop the feeding pump (remember that she has a feeding tube in her stomach; she gets food nonstop via that tube).  Once they get the feeding pump stopped, they have to attach an empty syringe to the feeding line to allow pressure out of her stomach as she retches.  Over pressure in her stomach can (over time) un-do her surgery that wrapped her stomach around her esophagus.  YIKES!  Sadly, there are signs that the wrap is allowing more stomach contents up into her throat than it should (this is the hiccup I was referring to).  The good news about that is a test on Friday shows the wrap is definitely still in tact.

So how do you shower when you both need to be with her all the time?  Sleep?  Work?  Post a blog update?  The answer for the last few weeks has been a home health nurse for 1/2 the day (less on weekends).  The nurses have really helped us keep some sanity by always being at Alexandra's side.  From diaper changes to physician appointments to those nasty gagging episodes, they're there.  Unfortunately, they aren't here at night so sleep is still somewhat elusive.  

We do get to have fun, though.  We play with Alexandra throughout the day and when the nurses go home it's just us.  She loves to sit on the couch next to one of us and "talk" to the TV or one of us.  She can be quite loud when she wants to!!!

Anyway, here are some pictures.  I hope you enjoy...

Do I have puppy dog eyes, or WHAT?!

Hi Mom!

I love laying on Daddy's arm getting by back patted.

No tricks, just treats here!!!

First Week at Home

We were finally able to bring Alexandra home on her 143^rd day in the NICU.  At first I was going to talk about all the crazy stuff that has happened in the world since then, but I decided against it.  I’d rather keep this shorter than longer (believe it or not).

Trip Home

Alexandra handled her first car ride like a pro.  She probably didn’t know what to make of new scenery.  The first half of our trip is down a major road that is under construction, so lots of sudden stops (thanks to the people cutting you off) and lots of rough road to traverse.  If it annoyed her, she didn’t show it.  The last half of the trip is on Florida’s Turnpike, which is in better shape than the Autobahns of Germany.  That smooth ride put her right to sleep… until we tried to figure out how to get her out of the car.

Homecoming

In order to get to our house, you have to turn a corner about two houses away.  As we did so, there was a familiar face bouncing around the front of our house.  It was one of our neighbors… but this is a neighbor that Suhey has known since they were little girls.  We go to dinner together, and even go on vacations together.  This is the same friend that “broke into our house” during the NICU ordeal to load our refrigerator with cooked food (labeled, of course) and left disposable plates and cutlery so we wouldn’t even have to wash dishes.  Anyway, she was busy putting some “It’s a Girl!” decorations up for us.  We appreciated it.

Even though she had wanted to be finished before we arrived, it was great that she was still there when we arrived.  It turns out that moving Alexandra is a bit of logistical challenge that we had yet to master (more on that in a few moments).  We needed the extra pair of hands to get the baby and her gear out of the car and into the house.

The Gear

To be clear, when Alexandra was discharged, it was not because she was 100% ready to be a normal 5-month old.  Rather, it was because her recovery had reached a point where there was nothing being done in the hospital that could not be done at home.  She still requires oxygen, some monitors, and a feeding pump.  All of these things must go with her, including the oxygen (heavy metal thermos-like thing) wherever she goes.  They each have tubes or wires connecting to her, and if you are not careful, you’ll end up with a ball of spaghetti looking mess before you know it.  Each has a battery that lasts a fair amount of time, but we weren’t trained to know how long each battery lasts (comforting, eh?).  So of course we leave everything plugged in at all times, but in the back of our minds we have to wonder how long they last given her need to go to appointments.  This also means we have redundant sets of supplies (like diaper changing stuff) set at strategic locations.  You cannot simply scoop her up and take her to the pristine diaper changing table we have never used precisely because of the gear.

Getting out of the House / Appointments

On her very first full day out of the hospital, Alexandra got to go on a trip to meet her pediatrician.  She was promptly rewarded with two of her missing five vaccines.  Yeah, she took that well (she actually refused to make eye contact with Suhey for about 20 minutes).  Still, she seemed to love the new scenery going by the car window, and again, she handled the trip like a pro.  That’s good because she has a lot more appointments to go to.  I often joke that the main difference between being home and being in the NICU is that in the NICU the specialists and therapists come to you.  At home, you have to go to them.  Fun, fun, fun…

Special Thanks

A huge thank you goes out to Suhey’s mom (“abuela”).  She took a week off work and lived with us.  She was a cleaning, organizing, diaper changing, and a cooking fiend the whole time she was here.  Having an extra body really made the whole first week much more survivable.

What’s Next?

The next couple of waypoints include getting up to date with her vaccines, and probably adjusting her feeding.  After the vaccines are caught up (and they fully kick in), we can rest a little easier… especially with cold and flu season around the corner.   The feeding will need to be changed periodically to account for her growth and she needs to get transitioned to bolus feeding (three hours worth of food every hour instead of evenly spread out).

Before I forget…

We need to dedicate an entire blog about the people who helped Alexandra get here.  There were some nurses, respiratory therapists, a pharmacist, security guards, and even a valet who all made the experience tolerable.   I don’t mean they just took care of Alexandra, I mean they really humanized the whole thing.  Sometime when we get settled in, we need to do those individuals justice.  It also includes our bosses and our coworkers; I cannot explain to you the amount of flexibility that was shown to us since this ordeal began (which was actually LONG before Alexandra's birth).  In the meantime, just know we’re thinking about what you did for us…

Pictures - Click to Enlarge

Grand Pa helping get Alexandra situated

In Mom's arms for the triumphant exit (seriously, Karla made sure they paraded us around like we just landed on the moon; it was a great feeling and the other parents got to see a longtime resident going home.  If it gave just one of them a sense of hope, it was worth it).

Don't hate me because I am beautiful (but I am!)

Family shot with Grand Pa keeping perimeter security in the hall

Signing out officially!!!

Three generations hanging out, awaiting the valet to bring the car around

Homeward Bound!

Just a quick message for those of you who do not follow the blog updates via Facebook, but last night we posted that Alexandra is coming home on Tuesday!!!  It's gonna be crazy for a little while as you might imagine.  She'll have to get used to her new enviornment.  We'll have to get used to having her with us 24/7, and we'll have to get used to the machines she is coming home on. 

Thanks for your support thus far; we will post an update once the three of us are settled in!!!

Post-Op (Again)

Hi Everone,
Today Alexandra is 20 weeks old.  She added five more holes to her list that now includes missing 1/2 of two different ribs, one long incision, and three small holes from her surgery a week ago.  All of the holes have a story to tell; below is the story of the newest...

What she had done
Alexandra was starting to suffer a lot more from really nasty reflux.  She was very uncomfortable much of the time and she was also vomiting a lot.  It's a real testament to her personality that she was smiling as much as she was during the other times.  So anyways, on Friday afternoon she had the Nissen fundoplication that I had written about previously.  Nissen is probably the guy's name who first performed the surgery.  Fundoplication literally means to fold (plicate) the top of the stomach (fundus).  Actually, it is folded around the esophagus, which closes off the esophagus as the stomach fills up.  This makes the reflux less likely.  

The procedure also includes the instalation of a feeding tube, which connects the stomach to a tube through a valve sticking out of the left side of the belly.  This is how she'll feed, burp, and puke for the months or years she'll live with the feeding tube.  This new feeding tube takes the place of the tubes in the mouth or nose that snake down into the stomach.  She has a pretty low threshold for gagging, so maybe this will help with some of the vomiting.  Either way, it's allowing us to see more of her face!!

The surgery was performed laprascopicly so we're hoping the recovery is quicker than a big incision.

How did she do?
In the first 48 hours or so she has been doing very well.  She actually came out of the operating room with the breathing tube already out.  This meant the world to Suhey and I because we were so worried about going back on CPAP again for a while.  The nurses didn't seem to expect her to be in much pain, but she's been in enough that we had to ask them to be more aggresive with the "as needed" pain medicine.  They did so happily and her pain has been pretty well contolled since then.  She's still not back to herself, but we see some subtle signs that she's "coming back".  She's been opening her eyes more often and for longer periods of time, and has only smiled once or twice since surgery.  We're not concerned, however... it's only been two days since we changed the shape of her stomach.

We are VERY proud of how she handled herself.  It's amazing to see her go through the things we do to her and still not be fussy or cranky... Except when that diaper has a drop of pee or a speck of poop in it.  When that happens, all bets are off, but hey, a girl has gotta have her standards, right?

So now what?
Alexandra started to get milk and formula trickled into her stomach early the morning after her surgery.  The amount of milk is gradually being increased with time.  She's being supplemented with IV nutrition as we give her stomach time to heal.  She's still on continuous feeding, so her stomach still isn't being challenged with a "bolus" feeding, the way most babies eat.  So instead of say 3 ounces all at once every 3 hours, she gets 1 once over the course of each hour.  It's still unclear as to when she'll gradually transition to bolus feeds.  She does NOT need to be on bolus feeds before going home.

Ok great, so what about her breathing?
Her breathing is doing remarkably well.  She's still not able to hold her own without help, but considering she had surgery two days ago, we're very proud of her.  She's still not liking the nasal cannula in her nose, so we have to CONSTANTLY supervise her to keep the oxygen flowing into her nose.  

Okay, okay... the pictures (as always, click to enlarge)

Day before surgery - GAME FACE ON!!!

Nice little reminder of some of the things Alexandra's late Great Uncle Bill (Nash) did for the Children's hospital.  He was always involved with kids.  I remember once that Santa Claus came to his house to chat with my cousins and I.  I noticed Santa was wearing the same watch that Uncle Bill wore.  I was really impressed that Uncle Bill had so much in common with Santa...  Who knew that 35 years later he'd be watching over a great niece like this?

Dad, Mom, and Suhey anxiously awaiting the surgery to end.  I was wolfing down chocolate chip cookies.  Not pictured: Abuela, who was probably getting some cafe con leche.

Post Op Day #2, just chillin.  Check out the LACK of a feeding tube going into the mouth or nose; just a simple nasal cannula for oxygen.

18th Week - Personality to Spare

Hello and welcome back!

Breathing

This week was Alexandra's best week ever in terms of breathing.  At the beginning of the week, she was still off of CPAP and using something called a high-flow nasal cannula,  By mid-week, she was on a regular cannula, and by Friday, she was on something called Pedi Flow, which is another nasal cannula that delivers very small volumes of pure oxygen.  In plain English, she's now getting pure oxygen just trickling out of a tube that's resting at the entrance to her nostrils.  This is a form of breathing support she could actually go home with (if she still needs it when that long dreamed of day finally arrives).

Feeding

For the first time in a long time, breathing is not her primary concern.  Now we have to get her feeding.  She still doesn't want anything in her mouth, but Suhey has been working with a Speech Therapist to do some exercises that will hopefully de-sensitize her.  After another 1 or 2 weeks of this, we'll try to do another "swallow study" to see if she is properly coordinating the movement of fluids from the mouth to the stomach.  In the meantime, she's still getting her food through a feeding tube (through the nose, down into the stomach).

She was vomiting and refluxing quite a bit, so at the beginning of the week, a gastroenterologist was brought on board.  He concurs with us, the attending, and the pulmonologist that there are still more things to be tried before the big surgery is considered. We started her on an antibiotic (erythromycin), because it is known to propel things in the GI track in the right direction (the opposite of puking).  It's a pure accidental affect; it has nothing to do with the antibiotic affect and she does not have an infection.  Since it started, she seems to be doing better... less puking (less laundry), and her heart rate is lower again.

Personality

It seems her personality is coming out more and more.  Most of you know she's smiling now, but she's also doing some other interesting traits. When her Occupational Therapist comes, Alexandra knows she's gonna have some unpleasant moments (as we stretch out her neck muscles to compensate for how much she favors looking to one side).  To try to avoid this, Alexandra has - on more than one occasion - played opossum.  Also, some of the RN's have noticed that if she's in the room by herself she can be just fine... but the second she realizes someone is there, she'll start to cry.  Who can blame her on that one?

Smiling big for a head massage, thanks Dad!

Snoozing with Grand Ma

Abuelo's first time holding!!!

A Lot to Swallow!

Hi everyone,

This - the 17th week of her life - was a big week. Alexandra needed to undergo several tests to clarify what is going on with her ability to swallow and to see the anatomy of her esophagus, stomach, and first little bit of her small intestines.  The need for these tests is a good sign because remember we couldn't even dream of doing them just 1 or 2 weeks ago.

Her anatomy

We're happy to report that the esophagus has kept itself open just nicely.  There's always a chance it could have grown too narrow or developed a leak... But it didn't! Her stomach and first part of her intestines also look normal.  For those of you in the medical fields, we did an upper GI and an esophogram.

Swallow Study

Once we knew she had the proper anatomy to bottle feed, we had to make sure her body could "coordinate" everything from sucking, to actually routing the milk into the stomach (without any detours to the lungs, sinuses, or other off limits places). The test gave us mixed results. On one hand, the liquid she swallowed went where it was supposed to go.  However, getting her to actually allow a bottle in her mouth was a problem.  She has been rejecting anything and everything in her mouth lately, including her Binki.  So we interpret this as once she learns to accept things in her mouth, she should be ok.

Reflux

Alexandra has pretty intense reflux.  How bad is it? Vesuvius and St Helens come to mind. The test wasn't perfect... She had a tube going into her stomach (which keeps a valve open, allowing stomach contents to come back up). Also, she was laying flat... This is something she will never really be able to do.

Big Picture Stuff

Alexandra has been requiring a bit more oxygen over the last few days.  This could be a harbinger of things to come, or it could be because she's had some busy days.  Putting the extra oxygen together with all the test results is anything but easy.  On one hand, it could point us back to the fundoplication surgery.  However, she has several features that usually go against the surgery.  Those decisions are for another time...

Pictures

Alexandra and Mom relaxing before tests in radiology

Hanging out with Dad Friday night

Oooooh, look!  My mobile thingy is spinning again!!!!