Taking This Show on the Road

TEN. WEEKS.
Mercy me.

Seventy days.
Time flies when you're having fun. (right?)

We celebrated the P-nut's "birthday" with a most exciting bit of news... he could go for his very first walk! What we were NOT expecting was that they would let us go with no nurse, no monitors, no nothing.  Just us and an oxygen tank.  When you've had 24-7 nursing care and 24-7 monitoring for ten weeks, being without them doesn't seem possible.  Still, we were going to take every opportunity to bust out of there! Jeremiah had been asking to visit again soon, and this was a perfect chance for a family outing.

We loaded Parker into the stroller, hitched up the portable oxygen, and rolled on out.  It felt a lot like the first time I drove a car by myself, especially when they yelled, "Be back by 3!" after us.  It was slow going, as we were so ridiculously terrified that we would take 2 steps, stop and look in the stroller, take two more steps, stop and look in the stroller, etc. etc. etc.

Mike and I both teared up-- we eventually picked up a moderate amount of speed, and the minute Parker felt the breeze on his face and saw something other than the ceiling of his hospital room, his whole face just lit up.  He is a smiley guy as it is, but these smiles were on a completely different level. 

 The Three Amigos.  Triple Trouble.  My heart and soul and life.

So often during this experience, we have realized how much we took for granted with Jeremiah.  Who'd have thought we'd have to wait 70 days to show our little one the sunshine? 

 

 Me and my boys and the newest member of our family, Mr. Oxygen Tank.

 

 Happy happy happy family.

 We didn't stay out too long-- 1) we were too scared, and 2) it was bleeding hot.  It was the most nerve-wracking half an hour of my life, and if it's any indication as to how life will be once we really do break out of there, I am going to be on every anti-anxiety happy pill I can find.  The maiden voyage is over, and it can only get easier from here!

We are just as ready as ever to get out of there.  Dr. Williams was happy that we didn't make a break for the parking deck and get the heck out of dodge.  Still, Parker continues to inch closer to the finish line. Earlier this week, he made it for an hour off of oxygen completely, but had to go back on after he got too low in his oxygen sats while deeply asleep.  I am happy he could make it for ANY amount of time, and the plan for now is to give him a few more days of support before trying again.  

Oral feeds are going swimmingly for the most part-- he has gotten up to about 50 ccs (ie 50% of the way to no feeding tube!) here and there, but it's not consistent just yet.  He's now officially off methadone (HUGE PRAISES for a non-opiate addict baby) and Lasix, and down to a small dose of Ativan and some reflux meds.  Checking things off the list.

Our big prayer requests this week are the same as always-- feeding and breathing.  He's doing so amazingly well, and we are SO CLOSE to going home.. we need this week to show big progress each and every day.  

I also need a big giant dose of patience, and approximately 100 reminders that God's timing is perfect, and He will allow Parker to show us when he's ready.  

I will finish off with my new favorite picture-- Jeremiah got to hold Parker Friday, and he was so very proud.  I simply cannot wait to see the tomfoolery these two will dream up.

 

Remind me of that statement in a few years.

9 and 1/2 Weeks

With a title like that, plus the fact that today involved some nekkid times, you might think you've stumbled across some shady dealings here.  Not so!  It's just that this guy is now 9 and 1/2 weeks old, and he tried breastfeeding for the first time today.

Look how long he is!  He is maxing out that crib.

His initial impressions of breastfeeding appeared to be confusion, disdain, and scorn followed immediately by delight, enthusiasm, and somnolence.  He made it a few good minutes and then just slap passed out.  I'll count it as a good first try, and I'm encouraged that we can make it work.  If it doesn't, and he winds up bottle-fed, that will be equally as wonderful.  Around here we celebrate eating of any kind, be it from a bottle, a boob, or a tube. 

Speaking of eating, he's up to 1 whole ounce oral feeds every three hours.  I like to call this "30% of the way to not having a feeding tube."  Today, he was given a full bottle and 20 minutes to see how far he could get.  He made it to 30 ccs, so that's where we will stay for a while.  We will try to push it up bit by bit, with the eventual hope that he can get to the full 100 ccs.  That's a ways off... but he's getting there!  They've also weaned his methadone (one dose every two days), Lasix (once every two days), and Ativan (keeping the same dose from a few weeks ago, and not increasing it as he gains weight.  Eventually, he will outgrow it.)  As he kicks his drug habits, he'll be more wakeful and able to eat better.  Assisting with that is a lower flow of oxygen-- he's already down to .25L and doing great. 

In the 4 days since my last post, he is down to one-quarter of Thursday's oxygen level (and has snazzy new low-flow tubes with less tape!), and up to three times as much milk by mouth.  He appears, for now, to have taken the "balls to the wall" path I referenced last post. 

WHICH BRINGS ME TO....  More Imaginary Adult Conversations, with a focus on high speed shenanigans.

--I have been given such a hard time for using the phrase "balls to the wall" in my last post.  Everyone has snickered like 11 year olds.  Allow me to enlighten you, oh ye of adolescent mindsets... CLICK HERE and be amazed.  Anyone can go balls to the wall.  Even girls.  Tsk tsk tsk. :-)

--Speaking of girls going ludicrous speed, tonight's drive home from Storytime Shift started with the MommyMobile rolling out of the parking deck to Metallica's "Master of Puppets".  It's hard to be real hardcore when you have the little stick people family wearing MouseEars on your back window.  Still, I cranked it up and hit the highway.  Needless to say, when you have that on your radio and there's no traffic to be seen... let's just say I made it home in pretty good time.

**A final note-- please keep Parker's lady friend Bonnie in your prayers tomorrow.  She has been a total CDH rockstar thus far, and I have no doubt she will continue to amaze everyone. She has some big tests tomorrow, and she needs some spirit sprinkles.  You got this, Bee!**

You want the good news, or the bad news?

Good news--
Parker is medically ready to go home tomorrow.

Bad news--
Parker is not medically ready to go home tomorrow.

Yeah... I see your furrowed eyebrows out there.  As well they should be.  We're in a tricky stage of the CDH game, but we have the very best team of people helping us to negotiate it.

Our much beloved Dr. Williams is back on our rotation for the next 4 weeks.  She's the one who checked us in the day Parker was born, and she was with us the first two weeks of his life.  She was there during the worst of it, and she talked me and my husband off the ledge many times.  Particularly during the time that we thought he was a goner.  She's very warm and caring and approachable, and we are happy to have her back.  I decided today that I felt comfortable enough to ask her the question on everyone's mind:

"What has to happen to get us out of here?"

This last month has felt like an eternity.  We've been in the swing beds, plodding along.  He's made remarkable progress during that month, but it's not as grandiose as the progress he was making during the first month.  It's been slow.  We've gotten accustomed to a quiet and calm life in our gigantic private room, so much so that I honestly have a part of my brain that says, "This is your new normal, and it will be this way forever."  I KNOW that isn't the case, but it is truly almost impossible for me to envision a life with Parker at home and me not having to go to Egleston every day. (This is hard for me to explain, and I wonder if this happens to all NICU mommies after a certain time... you want to go home, you have faith that you'll go home, but at the same time, your life has become so entangled in the hospital that you've somewhat resigned yourself to being there forever.  Am I losing it?)

Anyway-- the short version of the story is this:  Dr. Williams has sent kiddos home in exactly Parker's condition.  He's on 1L flow of oxygen, which means he could go on low-flow (he probably will do that in the next few days) and take that home.  He's got a nasogastric feeding tube and he gets his feeds via a pump.  Lots of kids go home with feeding tubes, some in their noses and some surgically inserted through their abdomen.  He's still on methadone and Ativan and Lasix and various other meds, but we could administer them at home. We could sashay out the hospital tomorrow and be just fine.  We actually wouldn't do much sashaying with the tanks and pumps and whatnot, but you know what I mean.

Dr. Williams sees a different homegoing in store for Parker.  She sends babies home when she is convinced that they have hit a "plateau" of sorts where their day-to-day improvements have significantly slowed.  They will continue to get better, of course, but over extended periods of time. For some kids, that means being on oxygen and a feeding tube and meds at home, working to wean off of them over a period of months.

Dr. Williams thinks Parker might be just enough of a booger to go home "unencumbered."  She wants to give him a chance to prove that he doesn't need in home oxygen or a feeding tube.  He most certainly hasn't hit a plateau yet-- though it might feel like we have stalled out, he's really moving along nicely.  She wants to give him a few more weeks to see what he's made of.

Bottom line-- we will be out of there by the end of August(*****INSERT LEGAL DISCLAIMER OF NO GUARANTEES, YADA YADA YADA, THINGS MIGHT CHANGE, ETC.*****).  Sometime between now and then, we will know exactly how much home support Parker will need, if any.  He might go balls to the wall and leave all the tubes and tanks behind.  He might say screw it and come home with every bit of equipment he's got today still attached.  However, he won't go anywhere until he stops making significant improvements.

I felt lots better after our chat.  I am so stinking ready to get the heck out of this darn tunnel, and I am happy to know the tunnel will end in a month*****.  Do I want to come home with drugs and a feeding tube and an oxygen tank?  No.  Would we learn how to operate such equipment so that we could finally be a family of four under one roof?  Of course, and we would do so with grateful hearts for having him at home at all.

One way or another, we are going to be together in time to teach Parker how to call the Dawgs*****.  After all, isn't that what really matters? :-)

43 days. Just sayin'.

I think we can all agree to come away from today's talk and call it good news.  Parker is up to 10 ccs of breastmilk from a bottle every 3 hours.  That's a whopping TEN PERCENT of his entire daily intake, but you know what, we'll still call that GOOD NEWS.  But...

Parker was circumcised last Friday and got his first rounds of immunizations today and yesterday.

BAD NEWS.  Poor P-nut.  Thankfully, he has recovered well from all such means of baby torture, and is none the worse for wear. 

Mike and I were a little bit thrilled to have reached a point where those "normal baby traumas" are the only traumas in sight.

One more month... ish.***** Home by my birthday?****** 

Let's do this.

Yes, He Does.

Eight weeks.  Eight Mickey pictures (well, seven.  Waiting on Mike to send me the last one)

I look back at those early pictures and it feels like a different lifetime.

I honestly believe there is some sort of NICU Amnesia that sets in.  There are some days that I think to myself, "This hasn't been so bad... I wouldn't want to do it again, but it's easier than I thought."  Then I look back to his first weeks of life, when he literally was at death's door, and it comes flooding back.

We very nearly lost him.  We came way too close to not ever being able to see that sweet smile.  Parker has been through the valley of the shadow, to be sure.

But he made it.
We made it.

Our homecoming is now spoken of as a certainty, and it will likely be sooner than later.  This upcoming week is going to determine a lot about our departure date- he will probably be switched down to low-flow oxygen (which means more work for his lungs) and will be taking much more of his feeds by mouth (which means more work for everything).  Depending on how he does with those two things, we could be out of there quite soon.  In the middle of all that, he still has to be weaned on several medicines. The light at the end of the tunnel is getting closer.

I don't much like this tunnel, just to be clear.

In the months before Parker's birth, I had two possible outcomes in my head: 1) he will die, or 2) he will go home.  It might seem like those are the ONLY two outcomes, but I should be straightforward and honest about number 2-- I thought, "he will go home... *in less than 8 weeks*."

I don't entirely know why I picked that particular number-- I think it had to do with our initial consult with Dr. Parker.  He told us that the typical NICU stay for CDHers was sometimes as short as 6 weeks, but more often 8-12 weeks.  Maybe it was that day, maybe it wasn't, but I settled in my head that if Parker survived, he certainly wouldn't be in the hospital more than 2 months.

I prepared my psycho mommy binder with 8 calendar pages.  I lined up Jeremiah Care for 8 weeks.  I made 8 weeks worth of freezer meals. My psycho mommy binder has no more pages.  My Jeremiah Care rotation has ended, and it is now time to ask for help again.  As the freezer has emptied, I've been using it as a countdown clock of sorts. (Somehow. those got off by 2 weeks-- largely due to the fact that each meal feeds us for several days with leftovers, so I have 2 weeks worth of food left. Yay!)

I pre-planned so much so that I could remove those particular stressors for the first two months.  It worked FANTASTICALLY well.  Now that the time is up, I'm not stressed about it-- there are plenty of people who are willing to help with Jeremiah, and there have been no problems whatsoever with him.  Cooking dinner will be easy, now that I know how our daily routine works.  I am comfortable with how our lives are chugging along, and I'm not worried about having to continue for a few more weeks.

I just don't want to.

I'm tired of our family being split all the time. I'm tired of STILL not feeling entirely like Parker's mom instead of a visitor.  I'm annoyed that I allowed myself to formulate any sort of deadline. I'm annoyed that I am annoyed that we didn't meet my goal-that-wasn't-a-goal.  I'm annoyed that I've already started thinking that we WILL be home by my birthday, doggone it.

I feel disappointed, but then I look back at the progress he has made in 8 weeks.  I feel sad, but then I realize that he survived.  I feel tired, but then I know how short a time 8 weeks really is.  I feel whiny and grouchy, but then I realize that I've been able to witness a miracle. I have actually gotten to see God's hands at work, aligning people and circumstances so that His plan for Parker's life can start to take shape.

I've been reading over all the verses I had earmarked in preparation for this mess, and this one couldn't be better for my attitude this week.  I especially like the way it is put in The Message:

"So keep a firm grip on the faith. The suffering won't last forever. It won't be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, He does."
~1 Peter 5:10

Nom nom nom

Guess who is happy to be eating from a bottle?

THIS GUY!

As you can see, it took a little coaxing to convince him to wake up from his nap and eat.  However, once he figured out how delightful 5 mL of breast milk could be, he was off to the races.  He's had two days in a row of eating like a champ and not spitting up afterwards. 

It's a slow start-- his full feeds right now are 90 mL every 3 hours through his feeding tube.  We are at 5 mL every 24 hours by mouth.  The P-nut has a long way to go, but he has most definitely inherited the Knoll family's love of eating!  Our speech therapist Penny is quite proud.  (I should also mention that our OT Bernadette gave us an A+ on our homework for this week.  My nerd heart is happy.)

He continues to do well on his oxygen wean (he's at 2L flow and about 21-25% oxygen right now, with a possible wean happening tomorrow or Friday!), which means that as his oxygen goes down, his oral intake can go up.  He is doing well so far coordinating his sucking, swallowing, and breathing, but as the amount increases, so will the amount of work he has to do and the ensuing fatigue. Still praying that he can learn how to eat and that his little system can handle it all.  I think we're off to a great start!

Parker agrees. And he thinks Cat in the Hat is hilarious.

So, Abby, how are YOU doing?

I get asked this alot.  After the general inquiries into how Parker is progressing, people want to know how I am holding up myself.  My general answer is, "Tired." 

**that's a lie.  I am two exits on down the freeway from tired.**

A dear friend said to me this week, "I read your blog, but I haven't talked to you in ages!"  I hope she does not take it personally, because nobody has talked to me in ages.  My own husband might get 10-20 non-Parker related sentences per day.  Alas, such is life.  He's at work, I'm at the hospital, or he's at the hospital and I have Jeremiah.  Grown-up conversations are limited, thus I have decided to dedicate this entry to Grownup Things I Would Talk About If I Were To See Actual Grownups (outside of the hospital, of course):

1.  There's an annoyingly catchy song out right now called "Somebody That I Used to Know."  The xylophone part is, I swear to goodness, something we sight read at District Band tryouts in 7th grade.  It is sung by a man called Gotye...  I went around saying "Gotye"  like "Got-yer nose."  APPARENTLY it is "Gotye" like "Go-tee-yay" (as in Jean Paul Gaultier?)  Whatevs.  I like Gotyer Nose better.

 2.  I have taken such complete leave of my senses that I actually timewarped back 10 years.  In college, I had a parking pass for the Carlton Street Deck that hung on my rearview mirror.  You had to scan it at the gate to get in.  As I neared the entry gate at Egleston the other day, I grabbed Jeremiah's carpool number tag from the mirror and attempted to open the gate with it.  Somehow, decade-old muscle memory popped up and it took me a split second to figure out why the darn gate wouldn't open.

3.  Speaking of the parking deck, it endlessly amuses the cashier man at the exit that I bounce out of there after storytime shift with my late 90s gangster rap playlist going.  Ya know what, sir, something has to keep me awake as I drive home at midnight, and I shall "rock it til the wheels fall off" in my mommy mobile if I want to!

4.  I got the most remarkable customer service this week.  Long ago (as in 4 years ago), I bought a Playtex double electric pump on the clearance rack at Target.  I am not the sort to drop $350 on a Medela, but I needed one while I was nursing Jeremiah.  I scored the Playtex one for $93.  It worked like a champ for Jeremiah, sat dormant for 3 years, and is now working like a champ again for Parker.  Alas, I dropped one of the pieces, which is old and brittle, and it broke.  I called them, all ready to order and pay for replacement parts... all I got was a "I am so sorry for your trouble, ma'am.  We will overnight those parts to you at our expense."  No warranty.  No proof of purchase.  It is sad that we are now shocked by nice people.

5.  Pants with buttons are over-rated.  After spending almost year in stretchy pants, I am sad to give them up.  Still, it must be done.  To that end, I started the Biggest Loser Kinect game on the Xbox.  It scanned my body, made the MOST UNFLATTERING "3-d model" possible, and then informed me I was 3 feet 6 inches tall, with a 10 inch circumference neck. We are not off to a good start.

6.  We are all, here at the Knoll house, addicted to lactation cookies.  You might want to read that sentence twice, but I promise you read it right the first time.  After my mastitis, the lactation lady at Egleston recommended eating oatmeal and lactation cookies (say whaaa? I thought the same thing) to help get my supply back.  I found that recipe, spent $49 at Whole Foods/Fresh Market (weeping copiously at the cash register), and made a batch.  They are DELICIOUS.  After some initial misgivings that he might in fact start lactating (he hasn't), Mike has decided they are good for post-Crossfit workout, what with the protein and all.  That makes them MAN COOKIES instead.  Jeremiah is just happy to have cookies.  I don't know that they work miracles in the milk department, but I am willing to eat 2 a day in the name of research.

Or 5.  Just sayin'.

7.  Usher and I are cosmically linked.  He and his Baby Momma were having a baby at Northside the week that we had Jeremiah at Northside.  Just today I learned that he and his Baby Momma have a child (hers from a previous relationship) at Egleston suffering critical injuries from a jetski accident this weekend.
Before I heard that on the radio, I saw some man in sunglasses surrounded by an entourage in the lobby of the hospital.  It struck me as slightly out of place (but only slightly, there are some weirdos in children's hospitals) until I heard the news report of my drive home.  I intend to do some more reconnaissance for positive ID.  If it is him, I have to tactfully ask him if he will come dance with my sister when she visits next.  Sister HEARTS Usher.

That's all I can think of.  I miss my friends and family, and I miss my normal life.  Still, this is a temporary situation, I know my people love me (AND I LOVE THEM TOO!), and quite frankly, they aren't missing out on too much excitement in my life, as evidenced above.  My brain cells are devoted these days to entertaining a 3 year old and caring for a 7 week old in intensive care.  Speaking of:

Jeremiah spent his weekend with my dad, going bowling and riding gocarts and playing with all of EE's big boy toys (that's Lizzie, pictured above).

Parker spent his weekend workin' on his fitness with our physical therapy homework.

And sleeping.  He gets an A+ in sleeping.

Tomorrow SHOULD be a wean on Parker's oxygen, which SHOULD mean oral feeds can start this week.  We would so love some prayers that this part will go smoothly... CDH babies are notoriously bad at oral feeds, and it can really be a speed bump on the way out the door. 
Thank you for all your prayers and support, as always!

Homework

Mike and I enjoy jobs.  Checklists.  Measurable goals.  Thus far in Parker's care, our hands on involvement has, out of necessity, been pretty minimal.  In the last few days, though, we've met with the speech, occupational, and physical therapists, and they've given us lots of things to do to help catch Parker up.  It's funny-- you wouldn't think a 6 week old baby could require much in the way of therapy, and he doesn't.  He's doing well with most things (eye contact, looking for the source of sounds, tracking things visually, getting control of his hands, etc.), but our right-now goals are thus:

SPEECH:
-one hour of kangaroo care as many days as possible.  Kangaroo care means skin-to-skin snuggling... Parker in a diaper, me or Mike in a hospital gown (no shirt-- scandal!) with him on our chest.  There are approximately 8000 reports on the effectiveness of kangaroo care as an aid in everything from bonding to treating withdrawal symptoms.  Snuggling with Parker = easiest homework ever.
-Every three hours, at the beginning of his feeds, we can do breastmilk dips with his pacifier.  It helps increase his sucking strength, introduces milk to his tastebuds, and helps him start to think that sucking on something will bring food.  This will help tremendously when we start oral feeds, which will hopefully be end of this week/beginning of next.

PHYSICAL:
-Because he was on ECMO for 10 days, and on paralytics for almost a month, he obviously has some muscle atrophy.  We need to do lots of tummy time to strengthen his back and neck muscles.  I have, in my infinite wisdom (HA!), decided to add "unwrapped time" to this in which I completely unwrap him from his blankets and let him kick and stretch in his bed.  He loves it.  I have convinced myself that this is sound physical therapy practice on top of being just downright adorable to watch.
-His tendency right now is to look to the left-- when he was on ECMO, that's how he was positioned.  Our job is to encourage him to look to his right... when he's sleeping, turn his head that way.  When he's awake, put toys and such on his right side and encourage him to track them all the way over to that side.

OCCUPATIONAL:
-Capitalize on "awake time" as much as possible.  He's a baby, so he sleeps alot.  He's on medication, so he sleeps even more.  His medicine is being weaned daily, but he's still a snoozer.  When he IS awake, we've got to focus on sensory experiences.  He gets tub baths as often as possible now, so he can splash in the water.  He sits in his swing, so he can look around at will instead of staring at the ceiling and experience the changes in motion.  He has lots of visual and musical toys, which he loves.  We read to him ALL. THE. TIME. (poor kid, child of an English teacher).  Translation: homework = play with baby.  Check.

I am happy to have jobs.  The hard part for me and Mike is to remind ourselves that he's not anywhere near as medically fragile as he was, and that it's okay to actually move him around.  That's hard to do after spending so many days being afraid to breathe too loudly around him.  Still, if it will help, we will be there with bells on.  We are overachiever types, which most people would call "nerds," and when given homework, we approach it with gusto.

Yesterday, while I was at the hospital, my dad stopped by and got a good dose of Parker's awake time.  Dad and I stood there and watched him play, amazed that he's just a regular baby underneath all the feeding tubes and oxygen cannulae and scars all over his little body.  Though we might be biased, we think he's pretty darn cute, too.

Baby Einstein Aquarium is the current favorite toy.  He will talk and sing to those fish all the livelong day.  He will reach out and touch them.  And it helps with looking to his right.  (must not become creepy mom where all playtime is measured in sensorimotor development)

 

 Love my boy!

 

 Little Eddy and Big Eddy, P-nut and EE, etc. etc. etc.  

Dad remains convinced that his namesake also looks just like him.

All that playtime wears a booger out.  God Bless America, zzzzzzzzzzzz.......

Last night, we had a fun family outing to the Mall of Georgia fireworks. It was wonderful to be able to spend time together... we just need a P-nut and we will be all set!  We have the silliest three year old on two legs, but I adore him.  Happy birthday, America!

Slooooooooooooooooooooooooow.

It's a new month, which means a new neonatologist on rotation.  That bit of things frustrates me a bit-- when you're in the NICU for the long haul, just as you get used to a doctor and his/her way of treating patients, time's up and you get somebody new.  Thankfully, all the doctors in the various parts of the NICU float around a good bit, so they aren't strangers.  Still, new month, new outlook. (Don't get me wrong-- they all communicate with one another, and they're all working their hardest to get Parker out of there, but they all have different ways of going about day to day business!)

I spent a good deal of time with our new doctor today.  She sat with me for a while, outlining her plan for the upcoming weeks.  Her MO-- slow and steady.  She doesn't believe in pushing babies faster than they're ready to go, only to have them backslide.  She's a mom, and made several mentions today about how she tries to think of how her Mom-self and Doctor-self can work together for the good of the patient AND parents.  To that end, she wants to get us out of the hospital ASAP, but not until Parker is good and ready.  That means slow weaning of his oxygen, plenty of time for adjustments, and administering treatments that will make P-nut's jobs (eating and breathing) easiest.  It's not going to happen next week.  Or the week after.  Or likely, this month.

As deflated as I felt to hear that we very well could be here another 6 weeks depending on how Parker does, I was nonetheless grateful to be having discussions of home at all.  Not too long ago, we weren't sure we were making it out of there alive. In the grand scheme of things, another month or so isn't that long to wait.  Still, I am just so very ready to have my chickens all under the same roof.

It hits in the strangest of times-- we went to a 4th of July themed birthday party Saturday night (happy birthday to sweet Lyla!), and Jeremiah was of course suitably attired in his red, white, and blue.  Mike was at the hospital that day, and got Parker dressed.  He sent me this picture and text message:

"All ready for the party, Mom!"

I just fell apart, which is most definitely not the reaction Mike thought he would get.  I would have moved heaven and earth to take my little P-nut to that party, and I got hit full in the face with the heartache of leaving him in the hospital to go about life as usual.  It's not a daily struggle like I thought it would be-- I am able to walk out of there everyday and get some degree of restful sleep because I know down deep in my bones he is being very well cared for when we are not there.  I know that Mike and I are doing the best we can to spend time with him.  Still, it sneaks up on me and causes inconvenient emotional breakdowns in the middle of the Magic Kroger.

Hurry hurry hurry.

In other news, Parker's methadone has been weaned further (only once a day now).  He still gets diuretics to keep fluid from accumulating in his lungs, and that hopefully will allow some weaning of his oxygen flow this week.  He's currently on 3L at about 25% oxygen.  When he gets down to 2L, we can start attempting some oral feeding.  When he gets down to 1L, he can move to low-flow oxygen.  THEN we can start talking about getting out of there, even if it means oxygen support at home.
All in God's time.
He knows what Parker needs, and He blessed Parker with a very strong ability to let everyone around him know what he needs.

Parker DID get his first tub bath today, which he enjoyed greatly.  So much so that he fell slap asleep in there.  I did a terrible job of taking pictures.

**What's up, PS, with the light colored hair???  Whose baby is this?**

And... Happy Six Week Birthday (from Friday)!  Love the sleepy smile.