Peace and Quiet and Midnight Shouting

Day Two of Parker's life has passed fairly uneventfully.  For this we are grateful.

Last night, Mike and I slept like the dead.  The night nurses were fantastic about spreading out their check-ins as much as possible, so we slept pretty soundly for 9 hours.  Going on less than an hour of sleep since Wednesday, it was much needed!

I did totally shout at the night nurse when she came in one time.  I have been keeping my room at what feels like a comfortable temperature.  Everyone else says they can see their breath.  Hooray hormones.  Regardless of the frigid atmosphere, when sweet Suzzette popped her head in at some point during the night, my head registered that I was hot and she was standing right by the thermostat.  Coming out of a near coma, in my attempt to ask her to turn the temperature lower, all I did was yell really loud, "I AM SWEATING!"  and then went completely back to sleep.  It registered on some level that it might have come out wrong, but I couldn't emerge from the darkness to rephrase.  Whoops.  I think she got the message, though, because when we woke up even I was cold!!

They yanked all my cords, IVs, and whatnot so I was free to shower first thing this AM.  There really aren't adequate words to describe that first shower after a c-section.  It was delicious to wash my sweaty bed hair.  I tossed my surfboard print hospital gown for some stretchy yoga pants, and I feel like a million dollars!  I have been scooting around my room and up and down the hallway all day, I haven't needed any percoset, and I GET TO GO HOME IN THE MORNING!!  Dr. Sermons arrived, checked everything, and wrote my discharge papers for first thing tomorrow.  So so so so excited, but it is a probationary release.  If I do not take it easy, and if I undo all of his hard work with tomfoolery, he will have my hide.  I fear the wrath, so I shall behave.  I negotiated my driving restriction down to one week, which is more than fine.  CANNOT WAIT to see my little man tomorrow!

I got to see my first little man today.  Jeremiah came for a visit, as did some of our family members.  Jeremiah was most pleased to receive his "I'm a big brother!" pin (it lasted about 4 minutes) and to know that there was a McDonald's in the hospital.  He misses us, and wants to be with us again, but seemed satisfied that we'd come get him tomorrow.  He has been mercilessly spoiled by Naner (my sister) and Granny/Grandpa, so his protests have been minimal. :-)

Parker's day started out with a bang-- while Mike was helping me shower *so not as exciting as it sounds*, we missed a call from the NICU.  Parker's catheter was leaking blood, not urine.  They called in a urologist, who determined that it had not gone in straight to the bladder but instead to soft tissue.  I think Mike's manhood retreated into his belly for a few minutes.  The urologist fixed it, and they are running some extra antibiotics to prevent any accidental infection.  He's peeing up a storm now, so that issue should be resolved.  That whole series of events caused some minor ECMO issues due to fluid retention and him being uncomfortable, but now he is back to being stable.  They've taken off one of his BP meds (I don't know specifics, as my husband is a boy and doesn't relentlessly ask questions and write down every minute detail like I will compulsively starting tomorrow) and backed off the ECMO even more.  His blood pressure is running a bit low, so they are manipulating his dopamine to find out how little he can have while maintaining a good pressure.  He's off his paralytic, and is trying to breathe on his own.  He's started waving his arms and legs a bit, and though he hasn't opened his eyes, he seems to be responsive to Mike's voice. (As I type this, I got a text they are having Daddy/Boy Storytime with Mike Mulligan and His Steam Shovel before Mike comes back to the hospital for our last evening).

I might have just FaceTimed with Parker.  I might have gotten a bit weepy.  I told him to behave, to take his medicine like a good boy, and that I'd be there in the morning.  It is gut wrenching to see him hooked up to 8 million machines, but he looks extremely calm and comfortable, given the circumstances.  I've been channeling my MamaBear instincts into motivation to spend time with the breast pump.  Yeah, 'cause that's more fun than being with my P-nut.  *that's a lie*

He's rocking the superstar shades, isn't he?  Rest easy, tiny one.

12 hours from now, I will get to see my littlest boy.  A few hours later, I will be reunited with my Monster and we shall all arrive at my grandmother's house to spend the week so we can be near the hospital. Hopefully today, and the days after, will be a day much like today-- quiet, restful, with all the Knolls in better shape than they were when we went to bed last night.  What else can you ask for?

**EDITED TO ADD:

Extra creativity points for Kevin, one of Mike's college roommates and groomsmen, for this artstic take on Parker pastries.  He plugged the donut hole with a Munchkin, in hopes that Parker's hernia will soon be repaired.  Love it to pieces.**

The P-Nut Makes His Premiere

Y'all.  I don't even know what to say.  We have been absolutely AMAZED at the messages and donuts and prayers we have gotten today.  My entire Facebook feed is people either asking for prayers for us or pictures of donuts from across the United States.  By some complete miracle, this little blog has gotten almost 5000 views so far TODAY ALONE.  We are overcome.  Thank you doesn't cut it.

Noowwwwwwwwww... on to the big news! *and crummy camera phone pictures, but ya do what ya can*

Parker Edward Knoll arrived at 7:02 am.  He is 21.5 inches long and 7 lbs 15 ounces.  He came out crying (which was the best sound I have ever heard, even if the docs don't like CDHers to cry!), and fought the ventilator until he was given his paralytic.  He is perfect, and he is strong.

We arrived so very early this morning, and went in for pre-op.  True to form, I took 5 rounds of epidural medicine before I was sufficiently numb.  The anesthesia department here probably doesn't like me much!  Mike and I did okay, for the most part.  Anxiety, tears, prayers.  I have to hereby rescind my previous comments about the neonatologist-- it turned out she WAS working today, and it was a completely different experience.  Everyone in the OR (and it was A LOT of people) was kind, compassionate, and reassuring.

Parker made his grand appearance, and was quickly assessed by the respiratory team.  He was intubated in the OR, and we spent a few minutes watching him from across the room.  Once he was stablized, the team asked Mike to accompany them to the NICU while I got stitched up.  Dr. Sermons finished up, came around the drape, and wordlessly dropped a surgical mask "kiss" on my cheek before he left.  I adore him.  The assistant surgeon said, "You must be somebody, 'cause he doesn't go kissing on everybody!"  Off to recovery.

Mike and I were in constant contact by phone, and he sent me results of his preliminary tests.  1 minute APGAR was 7, 5 minute APGAR was 8.  Given that it's a 10 scale, with a 10 being virtually impossible to attain, we were happy with that.  They did a chest xray to ascertain what organs were where.

I was disheartened when I saw this.  SO MUCH INTESTINE on the left side.  Mike and I texted furiously, and he assured me that the air pockets in the intestine were making it look worse than it is.  The neonatologist saw a fully developed right lung with perfect breath sounds, and she heard breath sounds about 75% of the way down his left lung area.  It could be that there is plenty of left lung, but the view is obstructed by intestine.  Still, we were finally able to get a definitive answer that only stomach and intestine have herniated.  No word yet on the size of the hole, but it appears to be pretty big.

My body betrayed me in the recovery room... due to the amount of epidural drugs I required, I was shaking uncontrollably.  That's normal, but even post-op they couldn't calm my limbs down.  They proceeded to wrap me in heated blankets from head to toe.  I mean straight up mummy style. 
It was a low point.  There I was, alone in the recovery room, listening to the happy gurgles and coos of the other c-section babies, SWADDLED AT THE AGE OF 30!  Pity party.

Mike texted that the transport team had arrived, and that Parker was stable enough to visit me before hitting the road.  Parker's traveling entourage of 6 wheeled him in, and I must say I was most impressed by the contraption in which he would be moved.  They let down the sides of his isolette, and Mike and I finally got to rub his little hands and his gigantic, sloth-toed feet. 

I told him over and over and over again how much I loved him, how proud I was of him, and that he had to be strong and put on his boxing gloves.  It was so hard to see my P-nut rolling away, but the transport team was wonderful and I knew he'd be in good hands.

Parker got settled at Egleston, while Mike and I settled into our new home.  Let me tell you something-- if you don't have a baby with you, you are virtually ignored!  When we had Jeremiah, it was impossible to get any rest at all due to the constant vital sign checks for me and the baby, the constant comings and goings, etc.  This go round, I have been put in a very quiet corner of the hospital, and my nurses have left me alone for the most part.  They are very sweet, very on top of things, and supersensitive to the fact that I am babyless.  I have spent the day, blissfully alone, watching Food Network and napping between updates from Mike.  I was mentally able to transform my clear liquid diet into Anne Burrell's Meyer Lemon Pancakes as I watched.

 **that's a lie**

Parker arrived at HIS new home, and the rest of the tests (brain scan and echocardiogram) were performed.  His brain is completely clear, and the echo looks great.  What did NOT look great were his oxygen and CO2 levels-- in the upper half of his body, he was in the 90s.  In the lower half of his body, he was in the 70s (this is the better of the two situations-- his upper half, including brain and most organs, are well oxygenated.  Praises for that!) He wasn't ridding himself of CO2 in a timely manner, and it was escalating his blood pressure.  They tried various ventilation techniques and meds, but it wasn't working.

While Mike was en route to be with the P-nut, Egleston called my hospital room and asked for verbal authorization to put him on ECMO.  I surprised myself with my lack of reluctance or fear.  I have every confidence in the medical team, and if that's what they think will work, I told them without hesitation to go ahead.  They said they'd hold off on the surgery to insert the cannulae until Mike got there.

He's now on ECMO (only lung bypass-- his heart is strong enough and performing well for now), and his stats have soared. His color is back, his little tootsies are warm, and his blood pressure has improved.  Most of his meds have been discontinued or scaled WAY back, and even in the few hours that he's been on ECMO, they have started weaning him off.  He's resting comfortably now, with his Mickey Mouse lovey and whispered promises of Disney World.

He will stay at his current ECMO level overnight, and they'll re-evaluate tomorrow.  Even though he's doing great, we can expect him to be on ECMO for about a week.  After that, we'll start figuring out repair surgery and what's next.

I have to take a minute and give my husband the biggest shout out ever.  He has been completely in charge of Parker since the second we checked in this morning.  He has been amazing.  He only fell apart once, when he first got to Egleston, and other than that he has been a ROCK.  He asks questions, he gets answers, and he just helped me do the C-section shuffle to the bathroom and back.  He's visiting me to sleep for an hour before he heads back to Egleston.  I know he is exhausted and scared, but he is doing a phenomenal job.  I am a lucky gal, and JB and P-nut are two lucky boys!!

Will update tomorrow.  Thank you all, again, for your thoughts and prayers.  We are resting comfortably tonight in the peace that passes understanding.  Parker is resting comfortably in God's hands.

"For this child I have prayed, and the Lord has given me what I asked of Him.  So now, I give him to the Lord.  For his whole life, he will be given over to the Lord."  1 Samuel 1:27-28

Battlestations!!

Here we go!  Delivery day!  Last day as a pregnant lady!  Yahoo!!!

Our time on denial island has come to an end.  The week of relaxation is over. The day we have been equally hoping for and dreading has arrived.  Today we find out which end of the "50-50 chance" little Parker will fall on.  He's in for the fight of his life.  Fight FOR his life.

I feel like there should be a montage here-- sweet little Parker drinking raw eggs, running up some courthouse stairs, and lifting barn beams with "Eye of the Tiger" blaring in the background.  Instead, this will have to do:

Might as well put that pouty face to good use!

It terrifies me to no end to know that, from the second he is pulled from my belly, his life will be about fighting the CDH Monster.  We're in for some ups and downs and a long journey.  But we're ready to do this thing.  We know we are covered in the prayers of many, and that makes it so much easier.

Several people have asked what specifically they can pray for.  Rose, a fellow CDH mommy, is great about listing specific prayer requests, and I am going to try to follow her example.

1.  Safe delivery for me and Parker
2.  Strength and peace for Mike, as he will be running back and forth from Parker to me.  I have told him time and time again that Parker comes first, but he's a boy and doesn't always follow instructions.
3.  Wisdom and guidance for the enormous medical teams waiting at both Northside and Egleston
4.  Good news from Parker's first tests-- that his heart is developed and working appropriately, and that his lungs are well-formed and ready to oxygenate, and that his first x-rays will show an easily repairable hernia with minimal disruption to the rest of his organs
5. NO ECMO!  We will, of course, go down that road if we need to, but avoiding ECMO is a good thing.  If his early testing goes well, our chances of ECMO will go down.
6. Prayers for our little family, as we are scattered all through metro Atlanta.  I dropped off my furbaby and my first baby today, and my heart misses them. Please pray that Jeremiah remains blissfully ignorant of the stress we are under, and that he doesn't feel swept under the rug.

After a few days, we should know a lot more about what we're facing and the timeline for repair surgery.  In the meantime, we are so appreciative of any and all prayers, good thoughts, spirit sprinkles, etc. etc. etc. you can send our way.

SPEAKING OF WHICH---

Today was a good day. I dropped off Jeremiah at preschool, went to Krispy Kreme, and got Parker his last donut for a while.  He and I had a lengthy discussion about how there are infinite donuts awaiting him, plus a trip to Disney World, on the other side of the NICU,  but that he will have to behave nicely to get them.  I think he's upset about being cut-off with so little ceremony, but that's life.  Can you do me (and Parker) the most ridiculous of favors?

If you find yourself, tomorrow or at any point in the next few days, in the vicinity of a donut store, stop and get one.  Send some happy donut thoughts our way.  Parker and I both will be stuck in hospital beds, devoid of donuts, generally grouchy and trying to be on our best behavior.  It would tickle me to death to know that donuts are being consumed all over Atlanta in honor of Parker's birthday.  BETTER STILL, take a picture of your donut and send it to me.  Facebook it, text it, email it, whatever.  It will give me something to look at and smile about while I am trapped at Northside, away from my very sick little boy in his critical first few days of life.

I'll update as soon as I can-- see ya on the flipside!!  Much love to you all.

Freedom from the Funk

Here we are-- 36 hours before our lives are forever changed.  My follow-up appointments on Tuesday were uneventful, which is good.  Still set for surgery Friday morning.

I started off this week in a FUNK.  Sunday was Mother's Day- it was also Mike's birthday (on which he was working a 12 hour shift), my cousin Millicent's graduation party, and the rainiest day in recent memory.  Jeremiah and I went to church and prepared for a busy day. **I should add here that my church ensemble required the use of Spanx.  I am currently eleventy months pregnant.  It goes without saying that I started my day by emerging from my closet sweaty, cursing, and foul.**

Church was great.  The party was great.  We met Mike at work for some birthday Starbucks, and that was great.  I came home, laid Jeremiah down for a nap, and went to bed to read.  Somewhere in the middle of that very busy day, I put myself in an ugly place.  I was missing my own mother, to be sure.  I was suddenly struck by all sorts of self-pity that this was our last week of "normal" before being overtaken by the exceptionally abnormal.  Hand in hand with that was a general grouchiness at not being able to FEEL normal.  Well-meaning and good-hearted people ask me at least 10 times a day, "Are you okay?" "You need anything?" "How are you holding up?" "Are you SURE you're okay?"

One of my greatest faults, to which my dear sister can attest, is an uncanny ability to take on whatever emotional state someone else projects on me.  Growing up, Sister would say, "Why are you in a bad mood?"  I would reply that I wasn't, and she would say, "Yes you are."  We would go round and round, and eventually, I MOST DEFINITELY was in a bad mood.  For some reason, all of the well-intentioned and good-hearted inquiries as to whether or not I was okay suddenly had me feeling like maybe I wasn't supposed to be okay.

My goal throughout this entire pregnancy has been to avoid going down into the dark holes as much as possible.  I can usually see them coming, and can head them off for the most part.  I made a choice on Sunday-- if there were only 7 days of "normal" to be had before Parker gets here, then they were going to be as normal as humanly possible.

Since then, we have done a whole lot of NOTHING.  (By nothing, I of course mean laundry, packing, getting the car washed and oil changed, running 8000 errands, etc.)  We have grilled out every night and played in the jumpy house.  We have watched movies.  Today, I let Jeremiah pick whatever he wanted to do (go to the carwash and the toy section at Target).  We haven't talked TOO much about Friday, and I am doing my very best to just be a pregnant lady, not a high-risk scary pregnant lady.  We are doing our best to just be excited about Baby Day, and to enjoy these last few days of relaxation. 

As much as I have giggled at myself and my nesting, it has really worked out to our benefit.  The house is spotless, we are packed and ready, Jeremiah Care is squared away, our puppy Maggie is all set for a visit with her brother Glacier, and the freezer full of food stands ready.  All we have to do is wait for Friday morning and enjoy ourselves in the meantime.

We've shut off the anxiety valve this week, and it has been glorious.  We have put our little family in a box, which might look a lot like denial of our circumstances to some.  Believe me, we know there is a storm a-brewin'.  There are dark clouds on the horizon.  Other various scary weather metaphors.  We have 36 more hours of blissful ignorance, and we intend to spend them in the happiest possible ways.  Do you think they will let us move in to Menchie's? :-)

Pouty Parker, Pouty Mommy

POUTY POUTY POUTY PARKER!

I absolutely die laughing when I look at this picture.  The consensus is that it was past donut time.

Today was my last visit to the perinatologist.  Well, it was supposed to be.  Everything is fine, no real changes, but in the last week I have accumulated 3.6 extra centimeters of amniotic fluid.  It puts me at 25.6-- normal range ends at 25.  Translation--- I have to go back in Tuesday for ONE MORE VISIT with the perinatologist.  It will also be the day of my pre-op OB appointment, and then it will be go time!

Apparently nobody is really concerned at all with the extra fluid.  With only seven days to go-- it will make me more uncomfortable and MIGHT send me into early labor.  At this stage of the game, it won't make one bit of difference to Parker.  Sigh.  $4 more to the parking deck of doom.

We also spoke to a neonatologist from Northside today.  She walked over from the hospital to speak with us, and I have to say it was not fun times.  She chatted for about 10 minutes, and I was completely flustered by the end of it.  Her tone of voice and her line of questioning rubbed me the wrong way.  The first thing out of her mouth was, "Sorry about your baby."  She then asked about other children, and seemed mildly surprised that Jeremiah was born healthy.  She walked us through what will happen in the delivery room, and then gave a completely conflicting account of Parker's first hours of life.  ALL of our doctors have said that the priority is to make sure Parker is stable before transport to Egleston and that ECMO will be determined on an as needed basis.  The neonatologist today told us to expect Parker to be gone to Egleston within an hour or two of his birth, and that any testing would be done at Egleston.  She made some weirdly toned comments discouraging Mike from riding in the ambulance with Parker, even though Mike had expressed zero interest in that.  She expressed her near certainty that Parker would be immediately placed on ECMO.  She informed us that if all Egleston's ECMO bays are full, we will have to go to Augusta (!!!!!).  She followed all that up with, "Of course, he might not make it long enough to be transported."  Sigh.

We know all of these things to be true, but it was frustrating.  We have never met her before, she didn't even look at our file before she started talking, and to top it all off, she won't even be working next Friday when Parker is born.  *secretly, I am happy to hear that news.*  I know she was doing her job, giving us the facts (none of what she said was untrue), but we have been so very spoiled by our doctors.  They have all been so very caring, we have spent so very much time together, and we truly feel like we are in the very best of hands.  I left all grouchy and pouty like Parker, Mike blew it off and said it is unlikely we will have to deal with her again.

She did tell me: a) our pediatrician **shout out to Laura Putnam!  Love her!** is one of the most highly respected in her field and she refers anyone in the area to her, b) she was pleased I had managed to breastfeed Jeremiah for 7 months, and c) I looked great.  Whatevs.

All of that to say-- back to the perinatologist Tuesday at 8 am, OB appointment Tuesday at 10:30 am, and then Delivery Day on Friday at 8 am!  Yowza!

Gotta end with a mind cleanse--

I CANNOT BELIEVE the amazing people we have in our lives.  Seriously, y'all.  Every single day we either have something dropped by our house or delivered in our mailbox.  We have gotten gift cards, puzzle books a-go-go, "sunshine bags", an artist's print of Krispy Kreme for Parker's room, monogrammed burp cloths, the sweetest cards, care packages, and so many offers to keep Jeremiah that I have him all squared away for 8 weeks.  It is truly astounding to us that so many people, some of whom are complete strangers, are so willing to love us and support us right now.  Please know how much it means to us.  How much all of you mean to us.  It is making this last week so much more bearable.

**We received a box this week from MJ's Memories, which is tied to Project Sweet Peas.  Megan sent us a huge box PACKED ABSOLUTELY FULL of NICU survival items (picture frames, brag books, toiletries, baby clothes, baby pillows and blankets, baby sleep masks, decorations for the room, etc. etc. etc. it just kept on going!), along with a very sweet letter.  She lost her little MJ to CDH, and she chose each and every item in that box with thoughtfulness and care.  Amazing, amazing, amazing.  Please visit their websites to see the work they do for NICU families. Thank you, Megan!!!!!**

Power of Prayer

First and foremost, it's Friday which means a visit to the perinatologist.  Uneventful, which is good, another 8/8 on our biophysical profile, and a growth scan today.

Mr. Parker Edward Knoll is currently weighing in at 6 pounds, 6 ounces.  This is approximately the size of a baby two weeks older than him, but I will take it quite happily.  I am huge person, my husband is a huge person, and Jeremiah has been huge since he was conceived.  We like 'em big.

His practice breathing was great, which is always encouraging.  I am decidedly uncomfortable this week, with more frequent contractions and some accompanying pains.  All of that is normal for a 36 weeks pregnant lady, but when I stood up to walk back to the exam rooms, sweet Lorrie (the nurse who sees me every Friday) said, "Ohhhhhh.  That baby is ready to come out."  There is a noticeable difference since last week.  Whatevs, P-nut, do what you need to do but hang on for 21 more days!

Scratch that 21 days business.  That sounds like forever.  Let's go with 3 weeks.

We got some adorable pictures of his pouty mouth and his gigantic cheeks.  I am so excited about meeting this little one!

I am, of course, commensurately TERRIFIED about what's coming.  We've known about this for 20 weeks now, and I'd say probably 95% of that 20 weeks has been pretty darn peaceful.  We know we are covered in prayers and love, we are way more educated about CDH than any parents ever should be, and we have our battle plan lined up.  Still, as it gets closer to D-Day, all the hypotheticals and what-ifs and uncertainties that used to be way off in the hazy future are staring us straight in the face.  We agreed that (I mentioned this in our previous post), as the time gets closer, we needed to meet with Chuck, our preacher, to get some "spiritual reinforcements."

We went to visit him and Leisa (children's director) on Wednesday,  He is a wonderful, wonderful man.  We talked through Parker's situation, and he prayed over us. Leisa prayed over us. I spent the majority of the hour doing the ugly cry, never moreso than when Chuck said, "Mike, come pray for your wife and son."

My husband is many things to many people, but what he is NOT is a talker or an emotional guy.  He's a police officer, so his standard response to stress is to go straight to business mode. He loves and feels deeply, he just shows instead of tells. (being a dad is turning him into a big old softie, though.  It amuses me!)  Laying his soul out to God in front of other people is most definitely not something he's accustomed to.  Bless his soul, he stepped right up and did it and it was beautiful.  EVERYONE was doing the ugly cry by the end of that, but I will most definitely put it up there as one of the defining moments in our marriage.  I love that man with every fiber of my being.

**I should add, however, that due to the emotional nature of our afternoon, we had to go get an iced coffee afterwards.  Told you.**

Here's the part where I record the things we took with us on Wednesday, so that during my low times I can look back on this and remember:
1) The God of All Creation is holding Parker.  Has been this whole time, and will be forever.  He is now, and will be, right there with him saying, "I've got ya, buddy." *that's where the ugly cry started for me*
2) He hears our prayers.  His heart is swayed by them. We may or may not get answers in the form we'd like to see, but what kind of God would He be if He did what we told him to?
3)  We don't know the purpose for Parker's life just yet, except that his life will work for the glory of God.  It might be that Parker grows up and gives a testimony to thousands about how God healed him despite debilitating odds.  It might be that Parker stays with us a short time, but helps us draw closer to God during whatever time we have with him.
4)  We can't let this affect our marriage. We took vows to keep God in the center of our marriage through thick and thin, and this will be a test of that.  If we keep our eyes on Him, we can keep our eyes on each other.
5)  "50-50" are man-made odds.  God is in control 100% of the time.
6) "The church best becomes the church when you NEED the church."  This is so very true.  We are blessed to be in a church where we feel loved, supported, and know without a shadow of a doubt that we are being prayed for constantly. *this is a tremendous lesson in opening yourself up to admit your struggles and accept the hands that stretch out to help you.  I actually had to convince myself to write "my baby needs prayers" on the bulletin and drop it in the basket one offering.  I hemmed and hawed and fretted about it, which seems ridiculous now.  Within 24 hours of me doing so, and every week since, we have been loved on and comforted and prayed for.  There are many wonderful people at our church who will do, and have done, anything they can to help us.  Such a blessing!*

Homework Completion

I gave myself a homework assignment over the weekend, which was to iron out some logistics as well as figure out how some things people can do to help us.

I might have gone mildly overboard with the first component.  The second is a work in progress.

This entire CDH journey has been one gigantic lesson in giving up control to God.  With every doctor's visit that ends in "Things look great but we'll have to wait until he's born...", I have had to dial back my type-A control freakiness and trust in God's timing and plans.  That's a struggle, I can't lie.  What's more of a struggle is that I am quickly realizing that no matter what preparations I make, no matter how many machine guns I tote to the hospital, no matter how much camo warpaint I put on, this isn't my fight. It's Parker's.  My entire job will be to sit in an uncomfortable chair by his bedside, staring at a monitor.

Unacceptable.  I must have things to do.  I must have a checklist.  I must have control over SOMETHING.

In the process of sorting out logistics (we NEED:  Jeremiah care, food.), I came up with the Crazy Mommy Scary NICU Times Binder.  If I could only get 8 weeks of our basic needs squared away, I would be able to relax a little for these last three weeks. 

I printed off 8 pages.  Each page has a weekly calendar with the dates outlined on which we will need care for Jeremiah (this is all contingent upon Mike's TENTATIVE plan to return to work after 2 weeks, thus saving some leave time for when we bring Parker home).  Each page also has details as to which frozen meals we will eat that week.  Accompanying each meal plan is a Postit note, on which resides the grocery list of "fresh" items needed each week to supplement our premade dinners.

In the front is the master list of who is keeping Jeremiah on which days (still plugging and chugging on that one).  In the back is a page with the reheating instructions for all meals.  All Mike has to do is pull out the appropriate dinner, follow 2 or 3 steps to reheat it, and make the side dish.

**I should mention here that I am NOT a CrockPot cooker, or a premade dinner buyer.  I love to cook, and cook from scratch 5 nights out of the week.  I had no idea where to start on this odyssey of premade food... ENTER ONCE A MONTH MOM.  It is a miracle website.  If you haven't been there, go immediately.**

I browsed the recipes and picked some to test.  We ate them all (most were really good, some were *meh*), and narrowed down our faves.  I supplemented with some of my standbys that I knew were freezeable, and came up with 12 meals.  We will eat each of them twice, and they are in portions large enough to feed the three of us dinner and still have some leftovers for the week.

I spent 2 evenings (I'd say about 8 hours total) making a disaster area out of my kitchen, and the grand total grocery bill was $160.  I completely chopped through the end of my left pointer finger, which has bled non-stop for 2 days, but here is the result:

24 meals, all ready to go, in my extra freezer.  Now to say lots of prayers that it doesn't stop working on me!!

"Jeremiah Care" slots are being filled quickly. I am so very grateful for the offers of help that have poured in, and after getting over the initial hurdle of feeling like a burden to people, I'm able to realize how dumb it is not to take people up on offers of assistance in whatever forms they may arise.

We had a meeting with Chuck, our minister, yesterday. Leisa, the childrens' director at our church, knew of our situation and asked if we would like to meet with Chuck and have him pray over us.  That will have to be a whole other entry in and of itself, but it was another reminder that turning off the Ice Princess mode and accepting love and help from others is OKAY, FOR THE LOVE OF PETE.

Our dear friends the Johnsons have signed up to care for Maggie, our boxer, for the days following Parker's birth, and then to take Jeremiah to VBS for a week so we can be at the hospital together.  My grandmother has offered to let all of us move in for the week after Parker gets here (she lives about 5 minutes from the hospital). I fretted at first that it was too much, but again I told myself, it is OKAY, FOR THE LOVE OF PETE.

You know what else is okay, for the pete?  Admitting that there are certain creature comforts that might make our NICU time more bearable.  And that allowing people to provide them just makes good sense for everybody involved.  Some things we have talked about:

1) gas cards.The hospital is 33 miles from our house. One, or both, of us will be making a 66 mile round trip every day.
2) gift cards to local restaurants.  From the exit off the interstate to the hospital, there is a Chik-fil-A, Chipotle, McDonald's, Burger King, Wendy's, and Subway (among others that I can't remember).  I get to eat for free in the hospital cafeteria (hooray breastfeeding), but I know there will be days when grabbing something from the drivethru will make more sense.
3) Starbucks cards.  It's ridiculous and silly, but my husband and I share some sort of unhealthy emotional attachment to iced coffees.  Whether it be a stressful day, a happy day, or a sad day,  we will look at each other and say, "I need a beverage."  It's code for, "We have fallen prey to the lure of the Starbucks siren, and we will willingly trade $2.50 for a very large cup of happiness."
4)  snacky foods for the hospital.
5)  puzzle books (crosswords and the like).  We are nerds.


So there you have it.  Mommy Homework, completed.  Needs identified and met, "creature comforts" identified for those who are kind enough to offer.  Crazy Mommy NICU Scary Times Binder set up and ready to go.  Meals frozen.  Three week countdown engaged. YIKES!!!