The first few days...

These first few days have been wonderful.
These first few days have been happy.
These first few days have been, um (searches for right way to phrase), hard.

We have been to the park.

I heart the baby carrier.  So does Parker.  Homefry has gained HALF A POUND IN FIVE DAYS (he now weighs almost 16 pounds), so I think our time with it might be limited.

We have been to church.

Love these two monkeys.  Love that I got to bust out the first of Jeremiah's "silly suits" again.  This one is a darling little Feltman Brothers bubble with a hand embroidered train on it.  He had on blue knee socks and little white shoes.  Mike HATES this outfit.  I could not love anything more!!

We have been sleeping 12 hours a night.

**insert picture of sleeping baby**

Correction:  HALF of us have been sleeping 12 hours a night.  Jeremiah and Parker both got my happy sleepy genes and are zonked out from 9 to 9 every night.  Mike and Abby are up throughout the night doing tube feedings and staring at the baby to be sure he is breathing.

(We DID get sent home with a Smart Monitor to use while he is on tube feeds.  I hate toting that darn thing around, but I am secretly happy to have it at night.  That is the only way Mike and I can close our eyes for any period of time.)

Apart from that, we are just trying to figure out how this little booger works.  He spent most of the first two days home being startled by every noise he heard and shunning any and all light.  Makes sense-- he spent 12 weeks in a dark and quiet environment, and the outside world is one giant ball of sensory overload for him.  He's chilled out quite a bit thus far.

He sleeps all night, and takes ridiculous cat naps during the day.  We have tried to lay him down and let him sleep for a while,  but after 20 minutes or so, he is up and ready to play some more.  He has, several times, fallen slap asleep in literally 2 seconds.  I have been playing with him, turned my head, turned back, and he's out.  I am sure he'll even out into some sort of schedule soon, but for now we just let him do what he wants to do whenever he wants to do it.  We also haul him around on all our various errands and outings, which is important to me.  Jeremiah is the most laid back kid ever, and I think it is largely due to the fact that he learned early how to go with the flow.

I am not entirely sure the P-nut will ever learn how to go with the flow, unless he has overseen the flow and deemed it suitable.

He is STUBBORN. AS. A. MULE.
I am going to have to devote an entire post to his first week of eating at home.  If you were watching me type this you would see me waving my fists of fury just thinking about it.

In medical news, we have seen our pediatrician twice, the gastroenterologist once, and are having a speech evaluation in the morning.  The pediatrician chuckled at how big his feet are, remarked that for such a sick baby he certainly doesn't LOOK like he's had anything wrong with him, and gave us some general info on caring for a "sick baby" vs. a healthy one.  The gastroenterologist flat out laughed at his weight gain.  Since we've left the hospital, he has put on twice the amount of weight they were hoping for.  STINKER.  They also have ordered a swallow study and a PH Probe test for September.

My sincerest hope is that we will not need those tests because the wretched NG tube will be out soon.  More on that tomorrow!

We spend at least six hours out of every day watching our two boys play and giving each other weepy sappy smiles.  People say that every day is a gift from God, but I have a new level of understanding of that statement that I certainly never dreamt possible.  I have gotten to see God move through all of our lives in the last few months, and it is humbling to know how much He cares for us.

We were running a bit late to church Sunday, almost didn't make it, but rolled in the back doors with Parker's stroller just as the worship team struck up a tune.  What was it?  Well, remember a week ago, when I mentioned a song that was helping me regroup?  The first song that Parker got to sing in church was "You Never Let Go." 

Indeed.

Home Sweet Home

There's so much I could say about the last 4 days.  I will have to write several posts over the next few days, so suffice it to say for now:

 90 DAYS LATER,

WE

ARE

HOME!!!!!! 

My heart is happy.

My cup runneth over.

etc. etc. etc.

Leaving the hospital Thursday was somewhat surreal.  We arrived that morning, signed some papers, and that was about it!  Saying goodbye to everyone was hard.  Very hard.  Those doctors and nurses and support staff have been like family for the last 3 months.  They laughed with us and dried our tears.  They cared for Parker on a level I didn't know was possible.  They snuck him out of his room at all hours for snuggle sessions at the nurses station.

They saved our baby.

I said goodbye to his two primaries, Jaime and Ashley, Sunday night.  Ashley was our primary on the A side, and Jaime on the swings and B side.  Love love love those girls.  Our day shift gals, who worked with Parker most often, were Kate and the incomparable supernurse Sarah.  They, and all of their colleagues, made it possible for us to walk out of that hospital every day and know that he was cared for.

There was a near constant parade of people in our room as we were packing up Thursday.  Parker had developed quite a reputation amongst the staff as a shameless flirt, and he acquired many lady friends with his smile.  They were genuinely sad that he would not be there anymore, but so thrilled for him to be going home.

We got the P-nut all dressed up in his frat-tastic going home outfit.  My grandmother got him and Jeremiah these outfits for Christmas, 3 days after we found about his diagnosis.  I remember trying so hard not to cry when I opened it, wishing and praying so hard that he would wear it one day. 

*totally crying a little bit right now*

 We left there armed with a PILE of paperwork and follow up appointments.

We packed up our business and went down the hallway for the last time.

We ceremonially dropped our badges in the checkout box by the elevator (that box taunted me for 90 days.  I GOT YOU, BOX!)

 

We marched triumphantly through those hallways, rode down that final elevator, and loaded Parker into the car.

We both then promptly burst into tears.

We drove to my grandmother's house to get Jeremiah.  We pulled up in her driveway and burst into tears again, remembering the day that we pulled into the driveway on the day Parker almost died.  (We had to come back for my medicine, and we had been kicked out of the NICU while the urologist tried some last ditch efforts to keep him alive.  I can't tell you how many prayers were said in that driveway, some of pleading and some of praising.  Goosebumps.)

We went inside, ate lunch, and realized that we are finally all together.

 

We drove home, and got all settled in.  But we DID make one stop on the way home...

 You had to have seen that one coming.  :-)

Nesting 2 .0

Crib is waiting.

(yep-- two safety violations in one picture... a bumper and a Bumbo!  Go on and shoot your mommy judgement eyes at me.  Crib is 60 years old and meets no current safety standards for spacing between the bars.  Also, not planning on leaving baby unattended on top of the table.  Carry on :-))

Rocking chair sits ready.

Carpets are steam cleaned.
Tiny little clothes are pressed and hung.
Toys for the wee one are dusted off and anxious to be played with.
Prescriptions are filled.  Medical equipment is set up.

Our family is ready to be together.

All that's missing is a baby.
And he'll be here tomorrow!!!

Parker SHOULD (barring some disaster) be home tomorrow afternoon.  He threw us a bit of a curveball this morning and started puking.  My heart just fell to my toes... that's a sign of possible reherniation and I just don't know if I could have handled that less than 24 hours from discharge.

A chest x-ray was done, which looked perfect.  The consensus is that his new reflux meds hadn't yet kicked in, and we've had no problems since then.  Fingers crossed.  Toes crossed.  Arms, legs, and eyes crossed.

See you soon!

Regroup

A very dear friend-who-might-as-well-be-family (I will always think of her as "Aunt Laura" even if she's not one bit my aunt!) sent me this sign after Parker was born.  It hangs by my front door, and I look at it every day when I come downstairs to start my morning.  It makes my heart happy, and it gives me a boost when I need it (particularly over this last weekend!).  The lettering is a bit off center intentionally, since even the best days are "a little off."  Love it.

After my temper tantrum at the end of last week, I had the most wonderful weekend.  I played with my Monster, and got lost in his imaginary worlds.  This particular moment involved him shooting rockets at The Bad Guys, wearing his goggles to help him aim, and utilizing his bungee cord safety belt.  He has been our light on the darkest days.  Love him so.

We all went to visit Parker on Saturday afternoon.  We went for a walk, Parker and Jeremiah entertained each other, and my heart was happy.

 

Mike and I had Date Night Saturday night, and we spent it doing CrossFit (I'd post a picture of that, but none exists for many very good reasons.  Instead, let's pretend this is me.  HA!)

I'm not REAL SURE what has possessed me to start this foolishness, but 3-4 times a week, I use 

THIS WEBPAGE for a workout after everyone else has gone to bed.  It actually becomes a bit fun after the first week or so!

I baked up a storm, 'cause I'm just not myself when I'm not cooking.  I made a birthday cake for my sweet niece and tried some new recipes.  (Pioneer Woman's cinnmon rolls and Southern Living's strawberry curd.)

We have started crossing the t's and dotting the i's to finalize Parker's discharge.

We went to church Sunday, which always soothes my soul and reminds me that God has got this.  He always has, even before we even knew what "this" was.  I've had Matt Redman's "You Never Let Go" on repeat this weekend.... perfect song at a perfect time.

"I can see a light that is coming for the heart that holds on,

And there will be an end to these troubles,

But until that day comes...

Still I will praise you, still I will praise you."

Almost there.

Done-zo.

Abby... meet proverbial wall.

When I sauntered about saying, "Balls to the wall, Parker!", I forgot to look where I was going, and I myself have Hit. The. Wall. Done.  Box it up.  I'm over it.

I am tired of my car.  I am tired of this building.

THERE ARE NOT WORDS to describe how tired I am of this sign.

 I am tired of this elevator.

I am tired of this lobby.

I am tired of this hallway.

I am tired of this hallway.

I am tired of these fish.

I am tired of THIS hallway.

I am tired of this elevator.

I am tired of THIS HALLWAY (for the love of pete with the hallways).

I am tired of these doors.  I am tired of calling back to say "I am here to VISIT my son, Parker."

I am tired of this room.

I am tired of this cafeteria.  I am tired of the “Monthly Superfoods” and I am grouchy that we are now on our fourth superfood (avocados, mushrooms, berries, and now chiles, in case you were wondering)

I am tired of this bench, where I eat lunch every day.  I am tired of that stupid bag that Northside gave me.  It is ugly, but I’ve never been able to bring myself to get a nicer one because that means we will be there longer.

I am tired of having all four of us in different places.  We all four have not been under the same roof for more than 12 hours in 12 weeks.  I am tired of not being home to play with Jeremiah. I am tired of snapping at my husband.  I am tired of Mike feeling guilty for going to work.  I am tired.

Added to that, I hit that dog, Mike got rear-ended at work, he got dispatched to a call for a fetus in someone's freezer, and my dad and cousin were in a boat explosion/ensuing fire (no very serious injuries, praise God, but a complete disaster nonetheless).  Needless to say, our mental states have taken a few blows this week.

It looked/sounded like we were going to go home in less than a week.  Now, we aren't sure when we will be going home.  Not due to any real changes in Parker's health, but more due to logistics such as determining which medicines he needs at home and what equipment we need from the home health company.  In my mind, these are not things that require more than a day or two to coordinate.  They want to finish off Parker's Ativan wean in the hospital. I feel like we can administer those last few doses at home.  They were hoping he would be doing better with his oral feeds.  I am completely prepared to take him home on his NG tube and we have been taught how to deal with that.

I am not a doctor.  I do not know all of the things that need to line up so that they feel 100% confident in sending Parker home. I am just a frustrated wife and mother who has reached the end of the rosy rainbow.

We've hung in there pretty well for 12 weeks.  I'd like to think that we have been cooperative parents and that we have helped as much as possible in Parker's care.  I'd like to think that we have had significantly fewer meltdowns and tantrums than we might have.  

I'd also like to think that our time on the merry-go-round is over.  It's been real, it's been fun, but it hasn't been real fun.

I feel somewhat guilty for unloading... The CDH community has lost way too many babies in the last few days (Those are just the ones who are part of the Facebook groups.  In all actuality, 3 CDH babies die every hour and there just aren't words for that).  There are two CDH friends who have reherniated this week.  There are NICU parents who have been chugging along much longer than we have.  We WILL go home, and that in itself is enough of a blessing to outweigh the rest.

In that spirit... let's turn the beat around.

-I am tired of the building, but I am grateful beyond words that it is there

-I am tired of the parking deck, but the little man in the ticket booth makes me smile.

-I am tired of the elevators, but I don't wanna be walking no stairs.

-I am tired of the lobby, but I am grateful for the people in it who volunteer to make the kids smile.  There are clowns, visiting celebrities, and our very own Fairy Godmother.

-I am tired of the fish, but they remind me to "just keep swimming."

-I am tired of the hallways, but at least I get my exercise.

-I am tired of the NICU doors, but I am grateful for the security and the fact that they have my baby on lockdown.

-I am tired of Parker's room, but I am grateful to be in it instead of in the critical care area.

-I am tired of the cafeteria, but I am grateful for my free meals and for the people who work there.

-I am tired of that bench, but I am grateful to be able to sit in the sunshine in the beautiful garden.

-I am tired of this rollercoaster, but I am unable to adequately convey my thankfulness to the God who has carried us all through.

Temporary trials.  Eyes on the prize.

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

~2 Corinthians 4:17-18

(just 'cause he's cute.  Mohawk courtesy of the night nurses.  Rock star!)

Life's First Breath

Yesterday was a BIG DAY for the P-nut. Not only did he officially make it to The Promised Land (aka the B-Side Step Down unit), but he also came off oxygen, we hope for good!

Eleven weeks old!

His new room feels ridiculously small after our last one, and it has a potential for a roommate family (slightly awkward!).  It DOES have a TV, a bathroom, a dresser, 2 sleeper chairs, and a window.

Room with a view! (and a Starbucks cup, to make it feel homey)

Maybe it's not the best view, but you know what... Parker loves the sunshine!

We are happy to be there, but the happiest part of the whole room is this piece of paper:

 

When we came for our NICU tour shortly after finding out about Parker's CDH, I fixated on these green papers.  Eileen said that once the green paper showed up, you were one foot out the door.  At that point, we didn't know if we would ever see the green paper.  I adore checklists.  Concrete goals make me glad.  I love you, Ticket Home!

I sat there yesterday, holding my sweet little baby boy, and for some odd reason could not stop the tears.  He is BREATHING.  Unassisted.  After eleven weeks of life. It's not TECHNICALLY his first breath, as he cried a few times when he was first born and has had two off-oxygen trials this week.  Still, as I sat there watching his tiny scarred chest rise and fall completely on its own, I got hit full in the face that every breath he takes is a gift from God.  There's just no two ways about it.  Weepy weepy weepy.  I kept singing the last verse of "In Christ Alone", which is one of my guaranteed-to-cry-during-church songs. 

From life's first cry to final breath,
Jesus commands my destiny.

No power of hell, no scheme of man

Can ever pluck me from his hand.

'Til he returns, or calls me home

Here is the power of Christ I stand.

(Looking back, I 100% was rearranging the words "cry" and "breath" to fit my needs, but it worked anyway.  Like it mattered, as I was a tonedeaf person attempting to sing whilst crying and trying her best to not be overheard and mistaken for the fire alarm.  Parker didn't care.  He likes my singing, God bless his sweet soul.)

Pretty sure I need this for his room!

He did great off his oxygen overnight, and I think he just might be out of the woods from a breathing standpoint.  All that remains to get us the heck out of there is to get off of Ativan and to do our best with eating.  I am pretty sure we'll be going home with his feeding tube, but I have every intention of being rid of it ASAP.  He has no physiological problems keeping him from eating-- he has not-too-bad reflux, but that's it.  No puking.  No choking.  He's just a lazybones and he doesn't really know what it's like to feel hungry.  He CAN eat (I got him up to 70 ccs orally at one feed), he just chooses not to all the time.

I did my first round of NG tube insertion today.  (I'm sorry, but what on earth is that doing on YouTube?  How did that sweet man get roped into volunteering for that??)  It was not my favorite thing, but honestly not awful.  Parker doesn't love it, but he's over it in less than 10 seconds.  There was much hand-flapping on my part, coupled by an inexplicable desire to sneeze.  Now that I've done it once, I feel fine practicing a few more times before being responsible for doing it at home.  I would prefer, however, for that to be a temporary situation! Get ready, P-nut, 'cause there's a storm coming.  Home will not be a place of rest and relaxation.  You will be enrolled, upon arrival, in Mommy Boot Camp to kick the NG tube to the curb!  Why?  Because this is just too adorable for words:

Sweet sweet boy with no tubes!! (this was during a tube change today)

Judgement.

Yesterday was all about judgement.  Chicken eaters vs. not-chicken eaters, voicing their various opinions and mutually hurling insults at one another.  It was, at once, all that is glorious about America and all that is wrong with America. 

That's not what this is about. 

Actually, it IS about chicken.  And judgement.  Hmmm.

I try, and often fail, to be as non-judgmental as possible. It's not my place to judge, everybody's sins are between their own selves and God, etc. etc. etc.  But it happens.  And I'm going to have a hard time letting go of this one.

Background info:  My neighborhood is lovely.  The houses are lovely.  The people are lovely.  The houses on the lots on either side and across the street from the entrance are not.  There are various farm animals wandering freely.  There are broken down cars and ramshackle sheds.  The Christmas lights are up year round.  (see, already, if you're honest, you've formed a mental picture of the sorts of people who live there!)

It was raining yesterday.  Jeremiah and I were on our way back home after a field trip to spend $3 at the Chuck E Cheese.  (Hooray, rainy day fun)  As we were approaching the entrance to our neighborhood, the car in front of me slammed on its brakes and swerved wildly.  I, obviously, did the same.  Too late, I saw that the driver in front had swerved to miss a small brown dog that was standing in the middle of the road.  A VERY BUSY ROAD, I might add.  I had nowhere to go.  The dog had nowhere to go.  You can imagine what happened.

I immediately pulled over, told Jeremiah to stay put, and ran out in the middle of the road.  In my 4 inch platform wedges.  In the rain.  Probably not the smart thing to do.  I scooped up the dog, who was obviously wounded, and took him to the side of the road.  By this time, the mailman had come along and offered his assistance.

Collar, but no tags on the dog.  Mailman recognizes him from the house across the street from where we are.  He goes to knock on the door. No answer.  Knocks on door of man whose yard we are in.  Man comes to door, dragging 6-pack by plastic rings (it is 3 pm.  Judgement.)  He proceeds to shout at me that those people deserve to have this happen, what with their freeroaming animals.  "YOU SHOULD SUE THEM!" he shouts. (judgement)  The mailman, by this time, has asked if there is anything else he can do before resuming his deliveries.  I have gone to a complete other frame of mind.  I am HYSTERICALLY CRYING on the side of the road in my platform wedges.  I am on the ground, in the mud, with a stranger's dog, being shouted at by a man wielding a 6-pack. (judgement from passers-by)  Mr. 6-Pack advises me to just go on home.  The Beast takes over Abby.

"Well, SIR, I have a dog myself, and I would not be pleased if someone did that to MY DOG!!!!" Shouting.  Snot rockets.  (judgement from Mr. 6-pack)  I am at a loss.  I call my husband, who somehow manages to understand enough of my words to confirm that my plan to take the dog to the emergency vet is a good one.  Mr. 6-Pack softens, a bit, and says, "Oh ma'am, there's no need to cry over this.  He'll be fine. You just go on home and don't worry about it anymore." (more judgement and angry eyes from Abby)

Ten minutes later, I am hurtling down the road, still sobbing, explaining to Jeremiah that we are going to be the puppy ambulance and take the dog to the hospital.  Thankfully, there is one very close to my house. I took him inside, and not 5 minutes later, was told that Little Brown Dog didn't make it. *not entirely convinced that the vet didn't help things along, which was honestly the kindest thing to do*

Poor, sweet Jeremiah.  He spent the whole time asking, "Mommy, are you worried? I feel worried."  God bless his tender heart.  Total mommy failure at keeping him shielded from the situation.  Thankfully, he didn't see the lady motion to me that the dog had died, so he was content upon leaving knowing that the dog was with the doctors.  The receptionist gave me a business card, and asked me to let the owners know, if possible, that they had 3 days to come get the dog.

I took JB home, took a shower, and told Mike (who had arrived home unsure of what sort of mental state I would be in) that I was going for a run. And to get an iced coffee, natch.  I have to drive past this house on my way to the gym, and LO AND BEHOLD the people are now at home.  Sweating in armpits.

I pulled into the driveway and was immediately surrounded by 5 more free-roaming dogs as well as approximately 12 ducks and chickens.  (judgement)  I asked the first lady I saw if she had a little brown dog.  "Yes I do."  I tearfully explained what had happened, overcoming a slight language barrier with improv sign language.  I handed her the business card and asked her to call the vet ASAP. (I didn't come right out and say, "Your dog is dead, ma'am" as she had 3 kids standing with her)

She looked at the business card, thought for a minute, and said, "Brown dog?  Oh, no, we don't have a brown dog."  Shrugged her shoulders, and walked away.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Judgement judgement judgement judgement.

 I stomped back to the MommyMobile and went to the gym.  When I drove back by the house on my way home, I quite literally shook my fist as I drove by.  I have to drive by this house every time I enter my neighborhood.  I worry that every time I drive by there, I will lower my window and shout something that might be construed as unkind, to say the least.  It's wrong of me, and I know it. 

Maybe they aren't heartless.  Maybe she didn't understand what I was saying. Maybe the dog wasn't theirs.  All I know is that I came home, scooped up my not-lap-sized Boxer and smooshed her face against mine for a long time.  I leaked many tears onto her ears. She took that as a sign that it was time to play squeaky toys.

All of this to say, for the love of all things holy, DON'T LEAVE YOUR DOGS (or chickens) IN YOUR UNFENCED YARD WHEN YOU AREN'T HOME!  Otherwise, that breeze you feel will be judgement from the MommyMobile as it cruises by.