Thursday, May 31, 2012

Go for Launch!!

We just got the "official" call that Parker's surgery will be tomorrow around lunchtime!  Today was spent prepping him in the event that the call was made to go ahead tomorrow-- paralyzed for 24 hours, increased and constant suction on his stomach to get all the air out and make it squish back through the hole easier, some extra blood volume added, some extra diuretics and steroids.  He was pretty out of it all day (obviously, with that laundry list of goings-on), HOWEVER, I finally got to see some eyeballs!!

I was too beside myself to take a picture.  Apologies.

He opened them several times when I first arrived, so I was able to talk to him and rub his sweet little face while they put him under with the paralytic.  My heart was (is) happy.


We are, naturally, nervous about the surgery tomorrow.  I know we are in the best of hands, but no parent wants to see their 2 week old baby boy, whom we have never gotten to hold and snuggle with, get wheeled into an OR.  Mike chatted briefly with the surgeon about the actual procedure, which will take about 2 hours depending on the severity of the hernia.  If you have a moment around lunch time tomorrow, please send some thoughts and prayers on down towards Egleston.  Mike and I will be in the surgical waiting area-- probably with me sweating profusely from my arm pits and Mike pacing around and playing his nerdy medieval app in which he takes over other people's cities on an imaginary planet (yeah... don't ask.  I mock him mercilessly on a daily basis for it.  And yet I love him still).

They will go in laproscopically to get a better view of the situation, and if they can, repair it without cutting open his chest.  In that case, they will stitch the hernia closed by suturing the diaphragm to itself.  This would be ideal, as opposed to a big giant incision under his ribs.  If the hernia is large, they will open his chest and fix the diaphragm with mesh and a patch (probably made of Goretex).  The risk of re-herniation later in life is greater with a patch, so we'd like to avoid that if at all possible.  We aren't too picky, really, so long as the surgery goes well and Parker recovers as quickly as possible!

The mysterious right lung situation mentioned yesterday will probably not be addressed tomorrow.  In addition to the three possibilities I listed yesterday, today the surgeon mentioned that it might just be some lung collapse from the right lung having to compensate for the left.  Whatever the case may be, they have decided that Parker will be under enough stress tomorrow without adding all that to the mix, and that they can re-evaluate after he is recovered from his repair.  Even if it is something that will be have to be surgically removed, that will wait for another six months to a year.  We'll be on a regular consult basis with Dr. Parker for a few years, so they can keep a close eye on it.  I am more than okay with letting that ride for a while if it isn't presenting any present danger.  We have enough on our plates as it is!

Tomorrow is NATIONAL DONUT DAY!  It's funny how God's timing has worked this week-- everything has happened sooner than expected, especially given the wretchedness of last week, so that one of the most critical days of Parker's life will fall on the day the rest of the country celebrates his favorite food.  We already felt good about Team Parker (baby and doctor), and now combined with National Donut Day-- Jupiter has aligned with Mars, peace will guide the planets, and love will steer the stars, etc. etc. etc.  We are ready to roll.  We continue daily to see God's hand in Parker's life, and we feel His grace carrying us as parents.  There's no way we'd be making it otherwise!

I will update after he comes out of surgery tomorrow.
Thank you so much for your thoughts and prayers.

Chugging Along

Today was a good, steady day for the P-nut... So much so that there is talk of bumping up his surgery to Friday!! We are thrilled (and somewhat frightened) by this news. Tomorrow's progress will determine if he gets the go ahead-- if he stays where he is or improves, it's a go. Prayers for the doctors to know if he's ready or not!! I trust them, so if they are comfortable with Friday, I will try to be too.

In other news, there is an abnormality on Parker's chest xray. There is a mystery spot on the bottom of his right lung. There are three possible culprits:
1) congenital cystic adenomatoid malformation (a benign cyst. Pretty rare)
2) pulmonary sequestration (lung tissue that develops but doesn't attach to the actual lung, therefore being useless. Can be common with CDHs.)
3) just part of his hernia (Dr Williams feels this is the most likely)

None of the three are life-threatening at this time, and all three can be addressed during his repair surgery. None of the doctors seem to be upset about it. Mike and I of course are not fond of "mystery mass on lung."  Still, whatever it is won't delay his repair surgery, and it sounds like all three possibilities can be removed with little to no fanfare.  Dr. Parker said he will just deal with it when he gets in there, and doesn't think a CT scan is necessary in the meantime.  It's always something-- this little one has quite a bag of tricks that he likes to throw in at various intervals!

I had Storytime Shift tonight.  Still no eyeballs for Mommy.  I DID get some response-- when I put my "mommy square" (a knitted pot-holder type situation that I wear in my bra during the day and then leave in his bed when I am not there... they say the scent is comforting to him) down next to him, he started sucking like crazy on his breathing tube.  He's got the right idea for what to do when mom's around... I'll take what I can get at this stage!

He was not paralyzed today.  When I got there, he was all sorts of wiggling around, but minus the angry silent cry sad face from when he was in so much pain last week.  He was just squirming tonight.  Squirming is good, it helps get fluid off and helps him start to develop muscle tone after the atrophy of 10 days of paralytic.  Shortly thereafter, he snuggled himself into his little nest, pulled his little arms in, and fell sound asleep.  There is a huge difference between the sleep of a heavily sedated somewhat paralyzed baby and a still sedated but able to move baby.  His sleep tonight just LOOKED different-- he looked peaceful and downright comfortable.


I read him "The Little Red Lighthouse," kissed him goodnight, and came on home.  Big day tomorrow-- surgery decisions.  Please join us in praying for guidance for the doctors to make the best choice for Parker.  He's had a heck of a week, and we don't want to upset the apple cart.  We also don't want to hold him back when he's ready to push forward. 

If his 12 days of life have been any indication, Parker will let us know in no uncertain terms.  Strong-willed little stinker.  Wonder where he gets that from??

Tuesday, May 29, 2012

What a Difference a Week Makes!

Just a week ago, we were in a really bad place.  We were getting ready to say goodbye to our little boy.

A week from today, we might be in a whole new place.  We might be looking at our newly repaired little boy!

Parker had a busy day today-- heart echo first thing in the morning, followed by the removal of his umbilical IV lines.  He got stuck in his heel for an arterial line that will do many of the functions his umbilical line was doing, and they pulled out his dried up yucky cord stump with accompanying tape and tubes.  Now, he just has a regular old belly with some monitor leads stuck on.  He got both IVs out of each hand, so those are freed up now. He's starting to look less like Bionic Commando and more like a lil' boy.  His head and neck have been slowly turned back towards the other side (imagine the crick after 10 days of facing the same way!), and the fluid in his head is slowly redistributing itself.  Perhaps the most significant moment of his day was being flipped in his bed so that he doesn't face the wall anymore-- he faces out towards the unit like a regular baby!  Big stuff happening for the P-Nut!

I got to change his diaper today, which made my heart glad.  Ever so slowly, I am overcoming my fear of my 8 pound child.  After some prodding and assurances that it was okay to do so, I grabbed both of those scrawny bird legs, hoisted him up, and took care of business. He did not break.  His IVs did not fall out or catch on fire.  The NICU police did not rappel in from the ceiling tiles.  I was so very pleased to be wiping that tiny hiney.  It's just adorable, if I do say so myself!

Medically speaking (here's the boring part for most people, but the interesting part for other CDH mommies):
He's on the conventional ventilator.  No nitric oxide.  Respiratory rates were at 50 yesterday, down to between 38 and 41 today.  He's on 40% oxygen level.  His blood gasses were great all day, and they will be looking to wean him down as much as possible throughout the week.  His blood pressure is a concern (it was too low several times today), but they cut back on his diuretic to help with that.  The echo results should come back tomorrow, which will give us an idea of what his pulmonary hypertension looks like now that he's off ECMO and responsible for his own circulation and oxygen exchange.  We are praying for good results on that and continued ease of transition to the ventilator!

I am also, selfishly, ready for him to be less sedated.  I usually take the day shift, and he's unresponsive to me.  (Mike, on the other hand, has now had several eye opening times during Storytime Shift.  I got a poopy diaper today.  Hmph!  I keep reminding myself that once it's milk time, Parker will find me most interesting!)  I know that he has to be sedated for many reasons-- pain management, his terrible terrible temper, maintaining his vital signs, and not disrupting the breathing tube.  With his surgery approaching, his sedation level will inevitably go up for a while.  Still, I am very very ready for him to enter baby rehab and get all of these medicines out of his system.  That's many many weeks away, and will be a slow, gradual process.  Those medicines are keeping him alive and comfortable for now, and I certainly wouldn't trade that. I've seen him restless during the last week, and I hate it.  Restless and sad Parker is infinitely worse than knocked out Parker.  It's a tricky balance-- now that he is starting to look more like a normal baby, part of my mind expects him to act like a normal baby.  We will get there!

I have to take a minute and say thank you to everyone who sends me Facebook messages or comments on here.  I read every single one of them, and I try to respond as much as possible.  Please know that all of the support means the world to us, and is a large reason that we are able to carry on with this odyssey each day.  Keep the prayers coming-- we have a long road.  ECMO was not much of a step forward... It was a measure to pull Parker out of the negative and put him back at ground zero, as he would have been on the day he was born.  We haven't even begun to deal with the whole reason we are in this mess- the hernia, the displaced organs, and the fallout with regards to pulmonary function and feeding.

Every time I am reminded of that fact, either by myself or by something the medical staff says, I think of the old Bill Murrey movie "What About Bob?"

"Baby steps down the hallway... Baby steps to the elevator... baby steps out the door..." 

Monday, May 28, 2012

Yeah... About That Peaceful Week...

First and foremost-- I must post the link (several have asked for it!) to Holden's Hut.  Emily has so sweetly asked if she can do a fundraiser for Parker this week.  I am amazed by her kindness and in love with her monogramming. She has appliqued and personalized bibs, burp cloths, t-shirts, and onesies... including a donut design.  Seriously adorable!! CLICK HERE TO VIEW HER SITE!  You can also find them on FACEBOOK.   Thank you a million times over, Emily!

In other news, you perhaps might notice that it has been 48 hours since I whisper typed about having a nice quiet week with Parker and preparing to maybe talk about possibly eventually coming off ECMO towards the middle-end of this week.  My whisper typing is apparently not quiet enough.

Saturday, as I wrote, was quiet and calm and peaceful, minus his two heart speedups (apparently those are called SVTs.  You could read about it, but it will hurt your head.).  Sunday, we went to church as a family, which was just plain good for our souls.  We were loved on and hugged on and fussed over and told a million times that people are praying for us daily.  Mike went to the hospital for the day shift, and after he came home for dinner, I took my first Storytime Shift.  Storytime Shift happens from 9 to midnight, which sounds wretched to people who are not night owls like we are.  It will probably have to end after this week, when Mike will head back to work and we will have to adjust our schedules accordingly.
  

I loved Storytime Shift.  I got to spend the day with Jeremiah, take a good nap while he napped, reheated the first of my Psycho Mommy Freezer Meals, and then headed down to sit with my little swollen conehead P-nut and read him a story.  (I chose Farley Goes to the Doctor. It was my favorite when I was a little girl... our copy is 30 years old and well-loved, and I thought it appropriate for Parker's situation.  I loved the Sesame Street books.  We still have so many of them!)


Parker DID NOT enjoy Farley.  He spent the entire time I was there just plain pissed off.  He was flailing.  He was pouting.  His blood pressure spiked.  He shifted his cannulae and set the ECMO machine into a tizzy.  All his numbers were fine, minus some occasional blood pressure and 2 more SVTs, but he was just plain ornery.  I stayed later than I meant to so I could be sure he calmed down, and crawled into bed around 2 am.

At 6:30 this morning, my cell phone rang.  Any NICU parent can tell you, those wake-up calls are the ones you never ever want to receive.  I managed to swallow the bile rising in my throat long enough to croak out a greeting of some sort.  It was the on-call neonatologist.

"Hi, Mrs. Knoll.  *insert pleasantries* We have been having to push a lot of blood products into Parker overnight." 

Heart failure.  Last time we heard those words, we almost lost our little boy.

"The ECMO circuit is starting to get clogged and is consuming much of the platelets that we have been giving.  At this point, the machine is starting to do more harm than good, and we are going to take him off this morning."

Pause long enough to be pleased that penis bleeding is not the issue, then panic as realization sets in.  Thankfully, she had to click over to the other line to talk to the surgeon and said she'd call me back. I used those few minutes to wake my sorry self up and nudge Mike.  She called back, and I asked how long we had.  "It will pretty much be now, as soon as Dr. Parker gets here."

Breathe huge sigh of relief that it is Dr. Parker (we met with him prenatally-- he is very kind, scary scary smart, and everyone around that hospital has the nicest things to say about him).  Fly out of bed, jump into shower, drag Jeremiah out of bed, place frantic phone calls to Sister to arrange last minute childcare (She lives 8 doors away from me and I am everyday grateful. Love you Sister!), get husband and child and self out the door.  Hold tight as husband drives well above slightly above speed limit.

I did use that car ride to do something I have never done--we were in such a hurry this morning that I actually had to utilize the car adapter for my breast pump.  Yep, we were "southbound with the hammer down" as my brother-in-law says, with me attempting some modicum of decency with a dishtowel draped over my seatbelt.  I always wondered why on earth they include a car adapter.  NOW I KNOW.

We got to the hospital in plenty of time to see Parker before the decannulation.  They had "capped off" the ECMO circuit, which means that it was still circulating blood for him, but it was not contributing any oxygen whatsoever.  They turned up his ventilator to the settings they would use after the surgery, and took some blood gas measurements.  They were spot on, combined with the results from his oxygen challenge the day before.  The window of opportunity had opened, and I am happy they made the choice to go on through.  Had the machine not started to get gummy, we might have waited a few more days.  I like to think Parker's restlessness the night before was him saying, "I am ready!  Get these tubes out already!"

Dr. Parker arrived and walked us through what would happen.  He would remove the two large catheters stuck in his neck, and stitch the openings closed. He would also put in a temporary central line using one of the holes to deliver the medicines that Parker was getting through his ECMO circuit. It's pretty straightforward, but also dangerous (obviously).  We kissed him and loved on him and told him to be strong.  I snapped one last picture of our bedspace before...

**shout out to nurse Sarah!  Woo woo!  Love and adore her.  She dealt so nicely with my hormonal sweaty armpit nervousness and my husband's incessant questioning and pacing.**

We waited in a consult room for about 45 minutes before Dr. Parker came in to tell us that all had gone smoothly (Parker did throw in one last SVT right before they started, just for fun), and that he was doing just fine.  We can expect these first few days of transition to a ventilator to be rough, due to the fact that his heart and lungs are actually having to work now.  He said that we should start looking towards next Monday or Tuesday for Parker's hernia repair, which will allow him to rest and strengthen his lungs as much as possible this week.  Shortly thereafter, we went back to our greatly improved bedspace (they did the whole shebang right there in the NICU and never had to move Parker at all!)...


Look at the space!  Dance party, anyone?


 We took a Proud Parent shot with our much less frightening baby.


We instigated Operation Cure Parker's Conehead and got to see his face straight on for the first time!

Parker celebrated by taking the first poop of his whole life.  Yep-- he had gone 11 days without ridding himself of the dreaded meconium.  So he ridded himself today.  Over and over and over and over and over again.  We love poop from Parker-- it means that his intestines are emptying, which will greatly aid the hernia repair process. The nurses have informed us that they will happily hand off dirty diaper duty soon, and I cannot wait to wipe that scrawny little fanny for the first time.

The next few days will focus on helping him adjust to the ventilator (he's doing well so far!  Some minor hiccups with his carbon dioxide numbers, but his oxygen has been great!), trying to de-puff the marshmallow man (he's on diuretics and peeing *and now pooping* up a storm),  and warding off pulmonary hypertension.  He has some (it would be a miracle if he didn't), but it's not too concerning just yet.  We'd like it to go away real fast, because that is what gets CDH babies into trouble.  

There's enough time to worry about all that this week.  We are going to bed tonight so immensely proud of our boy-- it was a less than ideal way to get yanked off ECMO, but the doctors truly felt he was ready and that the timing was right.  It was a scary day, and an exhausting day, but we are beside ourselves with relief.  He's so much less scary to us now.  We can approach his bedside so much more easily, we can actually touch him and rub him and smooch him without with less anxiety of knocking something over, and he will be able to eventually be less sedated and more aware of his surroundings soon.  He has shown us, time and time and time again, that he's a fighter.  Thank you, God, for this tiny miracle!!

All day today, as I was praying and pleading for this to go smoothly, and then praying and praising for God's mercies, I had this verse running on a loop in my head:

"This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life.  I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the Lord."
--Ezekiel 37:5-6

He put breath into Parker's body today.  Granted, it's with all sorts of mechanical assistance, but when push comes to shove, God made sure Parker was ready to come off ECMO.  And we know, as we have been reminded so often during this journey, that He is the Lord.  Amen!

Saturday, May 26, 2012

Quiet Day

Ssssshhhhhhh... do you hear it?  That's the sound of peace and quiet from Parker's corner of the NICU.  For the last 23 hours, 59 minutes, and 40 seconds, he has been happily snoozing with no drama.
*I wish I could type in whispers.  'Cause that's what I feel I should be doing so he doesn't overhear me and start acting a fool*

I have to reserve 20 seconds of the last 24 hours for his two tachycardic episodes-- one last night and one this morning.  For about 10 seconds each time, his heart rate shot up into the 190s to 200s (he normally cruises around 130).  By the time the ECMO specialist could adjust her dials or the nurse could push the button to silence the monitor, it was over.  Unknown causes.

My initial fear was that it must be some sort of seizure.  Nope.  They thought it might be from the ECMO cannula "tickling" his heart.  Could be, but doesn't look like it from the xrays.  The general consensus is that he has run out of other tricks, and has resorted to this to keep everyone awake.  Nobody's really concerned about it, as ECMO can have all sorts of wacky side effects.  There are zero other indicators-- no change to his blood pressure, oxygen levels, or outward appearance.  Still, I'm his mommy and I'd like it to go away.

Apart from those two 10 second intervals, Parker has been remarkably well-behaved today.  He continues to pee what seems to be impossible amounts from his tiny little body (granted, they are pumping alot of fluid into him, so alot comes out... but he's managing to pass all the fluid they are giving him PLUS some extra.  This is good news as it helps greatly with his swelling.)  His stats were AMAZING today...  yesterday they tried to bump his ECMO down to .28 and his oxygen started plummeting.  Just 24 hours later, he is at a .22 and his oxygen has been 96+ all day.  His blood gas draws have been spot on. PRAISES FOR HIS IMPROVING ABILITY TO OXYGENATE HIMSELF AND GET RID OF CARBON DIOXIDE!

*Here's where my whisper typing gets even quieter*
Yesterday, Parker's ECMO was at .31.  It is currently set to .22 and he's doing great.  Dr. Williams' goal for him is to be at a .20.  Just sayin'.

They have ditched the paralytic, but have increased his sedation.  Obviously, I would prefer a baby who isn't as drugged up as he is, but that's what it takes to keep him calm. He REFUSES to be still unless he's sedated, and we simply cannot have him thrashing around while he's on ECMO.  Believe me, he does thrash-- I've seen it.  He can wiggle a good bit now without the paralytic, which is helping with the fluid reduction.  There will be plenty of time for him to flail his arms and legs when he doesn't have giant tubes stitched into his neck.

All in all, it was a quiet day of rest and progress.  The ECMO team has a saying, "ECMO is 95% boredom, and 5% sheer terror."  I'd like to think we have used up our 5% of terror for our ECMO run and will finish up with some smooth sailing. 

Just don't tell Parker. :-)

Friday, May 25, 2012

Lifestyles So (not) Rich and Famous

First and foremost, it is Parker's one week birthday!  Happy birthday to my precious boy!

I have to be honest.  I usually internally mock the people with the "My baby is 467 days old today!" status updates.  NO LONGER, my friends.  If there has been anything we've learned in this last 7 days, 14 hours, and 39 minutes (see, I can do it too!), it is to treasure every blessed second.  So so proud of my boy.

Today was fairly quiet-- no real changes on anything except that they upped his diuretics with no upset of his blood pressure.  He peed and peed and peed and peed and peed all day.  *Note to others-- celebrating your child's pee might seem strange.  And it is.  But, after entering the phrase "scrotum sling removed today" in my journal, strange is a relative term.*  He's getting less puffy by the day, and it makes me glad. ESPECIALLY because, as I sat here typing, Mike texted me a video from Storytime Shift:

video

We have eyeballs!  The whole thing just makes me want to fall on the floor and laugh and cry and sing praises to God.  Best One Week Celebration Ever!

So many people have already commented on what a tremendous husband I have.  Trust me, I am aware.  He has amazed me this week.  I thought he was a fantastic Daddy before, but he has reached a whole new plane that I can't really describe to you.  I don't have to, 'cause you can hear it in his voice during that video.  Love that man.

In other news, Parker's day was, as I said, pretty quiet. They weaned down his ECMO a bit, but it's going slowly because the pressure on his lungs isn't going down as fast as they'd like.  I am much more fine with going too slowly than too quickly.  Dr. Williams stopped by before she left for her long weekend, and said that she expects him to still be on ECMO when she gets back Tuesday, but that her focus next week will be hitting it hard to get him off.  He's improving daily, his blood pressure is under control, and his xrays show lung growth every day.  We are hopeful.

Medically speaking, that's about it.  We were treated to many visitors today-- my boy is famous! Parker has the honor of being "the ECMO kid" right now, meaning he's the only one in the hospital on it.  He is now one of the stops on the Egleston tour for visiting dignitaries.  Today we saw many groups pass through, some of IT/tech people looking at the electronic chart systems and some of physicians.  They all stopped to see Parker's setup, which I must admit looks scary as crap impressive to bystanders.  I told Parker they were all coming to tell him happy birthday.  I don't think he bought it.

What also has amazed me is how many of the staff members know about Parker and keep up with him.  Lots of people who aren't technically assigned to his care swing by to see how he's doing.  Our sweet sweet transport team from Northside to Egleston stops by each time they bring in a new baby (which is too often, in my opinion.  So many sick babies!).  One of our ECMO specialists said he logged on from home on Wednesday to check on Parker after the Terrible Tuesday episode.  It makes me happy that so many people are invested in his care.  And our care, to boot-- anybody who works in a NICU is taking just as much care of the parents as they are the babies.  Bless their souls.  I would have kicked us out by now.

We are all settled back in our house now-- we retrieved our sweet Maggie, who has spent the last day collapsed in a pile of exhaustion from playing all week with her brother.  We slept like the dead in our own bed last night.  Jeremiah has been most pleased to be reunited with his baseball bat and glove.  We sure do miss JeanJean's Bed and Breakfast, where you eat until you burst and are fussed over 24/7.  She took such good care of us all week and I love her to bits.  It was so nice to be close to the hospital, and she gave us a key to keep so we can crash there whenever we need.  JeanJean rules.

We are trying to set up our "new normal" routine, factoring in a drive that is now 45 minutes each way and the fact that Mike may be headed back to work in 10 days.  It's hard, and tiring, but it's nothing compared to sweet moments with both my boys.  Jeremiah asks every day when he can play with Baby Parker.  Our standard response is "Parker is too sleepy to play right now."  Now that he's opening his eyes, i.e. waking up a little, we are one step closer to having two little boys tearing around the backyard with baseball bats and swords.  Hurry hurry hurry.

Thursday, May 24, 2012

The Small Things in Life

Will I EVER stop being afraid to be excited at the end of the day?  Will I ever stop waiting for the other shoe to drop?  Will I ever be able to go to bed without thinking that the phone will ring in the middle of the night to tell me we are back in

THE PIT OF DESPAIR???

I hate that it has to be that way now, but so it goes in the NICU.

Today was a fantastic day.  The P-nut is OFF HIS DOPAMINE and his blood pressure is maintaining quite nicely.  He is off of the preventative dialysis from the circuit change.  He's off his paralytic, and there is no sign of bleeding.  Instead, there is movement, and breathing efforts, and the sweetest attempts at opening his eyes!  His eyelids are still a bit too puffy to get them all the way open, but he is trying so hard. They started him on Lasix, which is a diuretic, to get some fluid off.  He's peeing up a storm, so it will hopefully work soon.  I can't wait to see his little eyeballs!

We had THE SWEETEST NURSE today.  I am so used to sitting in my chair trying very hard not to knock into anything.  Every so often, I will go to Parker's bed, rub his arms and legs and head, talk to him, and then go back to my chair.  The ECMO machine takes up a huge amount of space, and the whole setup is so very delicate, I am terrified of stepping on something.  I am terrified of knocking his cannulae (the big tubes going into his neck) out of whack.  I am scared of my baby.

Sarah, today's nurse, asked if I wanted to wipe his eyes and mouth.  I think I probably looked completely taken aback, and the first thing out of my mouth was "Can I do that???"  You'd think she had asked if I would like to fly to the moon.  She told me that OF COURSE I could wipe his eyes and mouth and that it's something he very much enjoys.  I saddled up and grabbed hold of that little wipe and went to town.  
(By "went to town," I mean "placed approximately 4 featherlight touches on his eyes and 1 sort-of swipe of his mouth, all the while holding my breath and being petrified of ringing sirens and NICU police descending upon me)  She told me that he particularly likes to have his lips moistened, and that he's trying to lick the wipe.  Sure enough, he did!  As I wiped his eyes, he tried so very hard to open them to see me.
  
I was completely beside myself.  Fell all to pieces but tried to maintain some dignity and also tried not to blow snot rockets on the child.  Amazing how something so very small, so insignificant when I did it to Jeremiah, could turn my whole world around.  Today was the first day, **do I dare say this out loud???** that I felt like he might make it after all.

When Mike joined me (he and Jeremiah had been to the park for the afternoon), he got a turn and also got to do some baby stretches to work some fluid through.  I put on some eye cream for him.

 (um, sorry for the sideways)

All in all, it was a tremendous day.  We left today feeling like parents, for the first time in a week. We were walking on air, especially considering how far we've come in 2 days.  It's is *almost* laughable what a difference a matter of hours makes to us now.  That being said, it plays right back into my fears I mentioned at the top-- we could go from blissful peace to Tuesday all over again at the drop of a hat.

It's not worth living in fear.  I am choosing instead to go to bed happy with the day we had today, and riding high on the fact that I got to help take care of my baby boy!

Pastor Ron came by again today-- he heard about how wretchedly bad things had gone since his last visit, and he wanted to check on us. I was most pleased to report to him that we were in a far better place.  He prayed for Parker again, and in doing so asked God to surround baby Parker and help him feel how loved he is.  We can't hold him and snuggle him, but I know without a doubt there are hands holding him in our place.  Mike and I are not the only ones taking tremendous pride in Parker's steps forward. It is the greatest comfort to know that we can say to Parker:

"The Lord your God is with you,
    he is mighty to save.
He will take great delight in you,
    he will quiet you with his love,
    he will rejoice over you with singing.”

-Zephaniah 3:17
  

Wednesday, May 23, 2012

I Lift My Hands

Y'all.  These last 24 hours have been 24 that I hope and pray to NEVER have to deal with again.  I apologize for the vagueness of the last post, but Mike and I had pretty much been told that yesterday might have been it for Parker.
The day started out normally enough, we visited and held hands and read stories.  Pastor Ron came by and prayed with us.  About 3 o'clock, it looked like he started hemorrhaging out of his penis.  (I can tell you straight up that there is a sentence you never like to type about ANYBODY!)  The bleed is worse than it should be due to the heparin (blood thinner)  required by ECMO, and it just would not stop yesterday.  As fast as they could put blood in, he would leak it out. 
They gave him an off-ECMO trial for a few minutes, since the bleed will not stop until he's off blood thinners. He didn't do so hot on that, so coming off ECMO wasn't a choice at that time.
They tried to address the bleed.  His heparin was lowered, he was given platelets and coagulants, nothing worked.
About 15 doctors and nurses crowded around the bed.  The medical director was called in.  These are never good signs to a NICU parent.
After much discussion, a plan was set into place that the urologist would come insert a thicker catheter in hopes of increasing the pressure on the bleed and lowering the volume pouring out.  Without anybody really saying as much, we were rapidly approaching the "last ditch" efforts. If the bleeding didn't stop, he was going to come off ECMO anyway.  Mike and I were sent away for a while, so we came home for my medicine and to tell JeanJean and Jeremiah that we'd be gone for an unknown amount of time.
It was a horrible drive home.  Mike and I were hysterically crying, praying, and trying to maintain some degree of faith that this would work. 
We got back to the hospital and stood in the hallway waiting for the doctors.  All of this went down right at shift change, so we were out in the hallway for a while- pacing, praying, clutching each other.  In the middle of all this, I had to keep to the pumping schedule (any mommies out there know that the milk machine presses on regardless of emotional turmoil).  I spent that entire pumping session praying to God to please please please let this bottle of milk be needed one day.  It was a dark dark time.

*insert break to thank you all for your texts, Facebook messages, and blog comments.  We felt it, we really did.*

We finally got the call to go back to the unit, and we walked into a calm, tranquil room.  The larger catheter is doing its job, and the bleeding has slowed to a trickle (it won't entirely stop until he's off ECMO).  Everything was stabilized, and he was back on his paralytic to ensure no jarring of his extra sensitive man parts.
We settled back down, rubbed his little hands and face, and told him that was enough drama for the day.  The doctors were relieved, we were relieved, big exhale.  Aaaaaaaaaaaaandddd.............

WHAM!

ECMO circuit blows.  Mike and I shoved out of room again. Herded in to small conference room.  Thankfully, it was a pretty quick wait and the doctor came in quickly.  Parker handled the whole thing perfectly, and his "reserves" of heart and lung function were actually better than they had been during the afternoon.
Mike and I called it a day, at that point.  We made sure that he was settled and read to him before we knew we had to go home to rest.  We slept with one eye and one ear open, waiting for the phone to ring, which it blessedly did not.

His day today has been eventful-- an ECMO circuit change for clean tubing (the old ones were getting yucky...it happens on almost every ECMO run and is to be expected.)  He did great and stabilized quickly afterwards.  He has been put on dialysis for a short while, which is also normal for ECMO circuit changes.  There is usually an accompanying fluid buildup with an circuit change, and the dialysis helps with that.  It's temporary and shouldn't have any bearing on his ability to get off ECMO as soon as possible.

We are, basically, back where we were before all this went south.  I am pleased to be there.  I knew, going into it, that we'd have our share of ups and downs, and I've honestly been waiting for the first shoe to drop since Friday.  Nothing can prepare you for when it does happen, but God's grace and thousands of prayers carried us through yesterday.  I read and reread and reread Psalm 46 last night and this morning, and listened to "I Lift My Hands" by Chris Tomlin.  God is our refuge and strength, and an ever present help in trouble.  No doubt about it, or else we would not have survived the last day, and neither would have Parker.
Thank you all for you many many prayers, love, and support.  Here's to a better day today!

Tuesday, May 22, 2012

Need Prayers, Please!

Not a good day. Parker's bleeding from his catheter site is worse, not better. They are trying to control it now. If they cannot, he has to come off ECMO. He did not pass an off-ECMO trial earlier today. We are at a critical juncture and need many prayers in the next few hours. Thank you all.

Monday, May 21, 2012

Drama Queen

Well.
After today, it looks like we will have to institute some sort of discipline system for Mr. Parker.  He has, um, sort of a *minor* temper problem.

Turns out that he spent his morning throwing such a fit of baby rage that he shorted out his ECMO machine.  Mmmmhmmm.
He threw two more fits while Mike and I were visiting.
These fits are a mixed bag-- on one hand it is delightful that he is strong and fighting and aware enough of his surroundings to know that something is afoot.  On the other hand, he's in a rather precarious situation already and doesn't need to be exacerbating it by thrashing about and trying to cry, in the process getting his blood pressure and his oxygens sats all out of whack.

Suggestions for a reinforcement system for a 4 day old?  His penmanship skills are lacking, so I can't make him write "I will not short out my ECMO machine with my buffoonery" 100 times.  His bed is already in the corner, so that's out.  Sigh.

His doctors and nurses have determined that, due to his inability to calm himself down just now, the only course of action is an extra shot of morphine and Ativan.  His fit this morning was so bad that they had to put him back on his paralytic for a while.  Drama. Angst.

What is likely happening is that his regularly scheduled medicine dosages need to be adjusted. It might be that he metabolizes medicine faster than some other babies, which is supported by the amount of urine he's outputting.  Naturally, if his meds start to wear off, he's going to be unhappy. I can't blame the guy! Dr. Williams upped his doses today, and he has remained quiet and restful since then. 

In other news, his dopamine is down from 16 to 10.  This is the medicine they are using to try to regulate his blood pressure, and if it can go away completely, that would be super.  As of right now, his ECMO setting is at a .28, and the goal is a .20.  I got a better explanation today, so instead of elves living in the machine I can actually explain what that means:

When we arrived today, his ECMO setting was at .33.  This basically is the speed at which things are moving through the machine (I THINK it is liters per minute).  As his lungs get stronger and are able to contribute more oxygen to the mix, they can decrease the speed with which the machine is circulating blood and contributing oxygen.  The lowest you can go on an ECMO machine and have it still functioning is .200.  If you can tolerate a .200 setting for an extended period of time, it's likely that you are ready to come off and try to be supported by the ventilator instead.  This is our goal, naturally.

At 2 o'clock this afternoon, he was at a .33, and as of right now he's at a .28 and holding steady.  He went down .05 in just a few hours, and he's only got .08 more to go.  Obviously, they do this at an excruciatingly slow (to us parents) rate and give Parker lots of chances to prove that he's either okay with the new number or needs to go back up.  He did go back up for a while after his fit today-- so we are hopeful that upping his meds will prevent such fits and therefore prevent anymore uppages on the ECMO dial.  Dr.Williams is going to give him the rest of this week to get down to that .200 and get rid of the dopamine.  If he can do both of those things, he will be cleared for takeoff for Phase 2 of his CDH fight-- focusing on repair surgery and growing some good lungs.

It's wretched to see him pitch a fit. It looks, on the outside, just like any other angry baby-- red face, squinched up fists, blotchy skin, kicking legs.  If you put a normal angry baby on mute, you'd have Parker. He's doing everything the same, just no noise is coming out.  It's heartbreaking.  He's uncomfortable, and I can't pick him up and snuggle him and make it go away.  The only thing that can be done is to drug him into submission. They also have told us that he's sensitive to touch and prefers to be left alone.  These two things together might possibly conjure up visions of a stoned-out baby, left languishing on his bed alone in the corner.  I can assure you that is NOT the case.

His nurses take such good care of him.  While I hate that he's in critical care, I love that he has one nurse assigned just to him, and for right now also has an ECMO specialist assigned just to him, each shift.  It makes it much easier to come home at night knowing that he's never ever by himself.  We, of course, are jealous of those who spend more time with our baby than we do.  We watched a diaper change today, and Mike commented that the nursing staff has changed more diapers than he has.  It's hard to know that I can't comfort my baby, but a nurse with a syringe of medicine can.

Still, we have to look at it like we did ECMO-- if that is what has to happen for him to survive, that is what will happen, without a doubt.  Plenty of time for dirty diapers and screaming fits later!!

In the meantime, I kept watching poor baby P-nut struggle today, and I kept telling him to just relax and calm down.  Into my head popped my verse for today- which I think all of us could benefit from right about now...

"The Lord will fight for you, you need only be still."
Exodus 14:14

Sunday, May 20, 2012

Freedom, Sweet Freedom

Busted out of Northside this morning.  Was not sorry to see it in the rearview mirror.  Told husband to hope against hope that it was our last trip to that particular exit for many moons.

First stop was Starbucks (naturally) and second stop was Egleston.  We hijacked a wheelchair from the parking deck, and my sweet husband wheeled me to the NICU.  Along the way, he banged my elbow against the doorjamb twice, at once causing me to double over in laughter and searing pain from my incision.  We arrived in the unit to be told, quite sweetly, by the desk lady (who had watched this all go down on video) that perhaps next time he might enjoy the use of the automatic door opener buttons.  We do not do anything easily here at the Knolls'.

He wheeled me through the dark, quiet space until we reached my ultimate goal:


Sing it with me, "Reunited, and it feels so goooooooooood..."
So so so so pleased to see my P-nut.  He had a nice quiet night, which is the best news to hear.  I met his wonderful care team, and his new friend Dr. Williams.  She ran me through his current status, and I tried very hard to pay attention.  Mostly I rubbed those sweet lil' chicken legs and I'm not sure if this is entirely accurate, but it's close:

1) Operation Heal Parker's "Package" continues to progress.  Cathether is placed appropriately, and his urine output is super and is clearing up rapidly.  There is still some bleeding, which is to be expected due to the blood thinners required by ECMO.  She showed me his little winky, and it looks quite awful.  It looks worse than it is, it's working just fine, and in the grand scheme of things is not a real concern at this point. 
2) He has had 3 consecutive days of clear cranial scans, which translates to no brain bleeding. (hooray!) She feels that his brain is just fine, thankyousomuch, and doesn't require any more scanning until closer to off-ECMO day.
3) Off-ECMO day will probably be next weekend/early next week.  He is currently on a setting of .310, and she's like to see it down to .200 pretty soon.  You could ask me what that means, and I could make up something, but it would probably have to do with the number of elves living in the machine to make the motor turn.  All I know is that his settings have gotten to go down each day, and he's maintaining pretty good status, and that's that.
4) His x-rays today showed improved right lung size and decreased intestine volume.  Both of these are excellent news.  As the stomach and intestine shrink down (they constantly suction air and gook out), there is more real estate available for lungs and heart.  We need those to grow as strong as possible before his repair surgery.  There is some pulmonary hypertension, but that's expected and it's not too bad just now.
5)  His blood pressure continues to be the sticky point.  He's trending towards the low side (just like his mama), and every so often will just bottom out and make his bells ring.  Nobody can determine what pattern he is following, and his nurses have determined that he just likes to keep things interesting.  It's not alarming, as his dips are never real big, and they are working on his dopamine to get him to level out.  Stinker.

Sweet Dr. Williams gave us the "the prognosis for CDH babies is 50%" speech today.  Still, she said *ever so hesitantly as these things can change at the drop of a hat* that based off of what she sees right now, she feels pretty darn good about Parker's progress.  We are lucky, because due to some wacky rotation, she will be our doctor for the first 10 days of Parker's life.  She is very familiar with his situation, and can see him through most of his ECMO run without having to hand him off to someone else.  She was so very kind and I have no doubt she is doing great things for my little man.

I also met several of Parker's nurses today-- both bedside and ECMO.  They are just the nicest darn people.  I went in there all terrified of what I was going to see and prepared to fall on the floor sobbing.  Within seconds, Mike was welcomed like family and I was quickly fussed over to be sure I behaved as a 2 days post-op patient should.  They walked me through each and every bit of equipment, explained all the 8000 screens staring at us, and told me how cute my baby is (which we all know is the most important thing).  Not one time did I feel overwhelmed or scared or weepy.  Even when it was time to go, I was okay because I really feel like Parker is in tremendously capable and caring hands.  This whole NICU business is tricky, and we haven't had any real yucky moments yet (I know they will come eventually), but I can feel God's grace carrying us right now.  Really and truly.  I got to see my P-nut today, and I am reunited with my sweet Jeremiah.  I just had storytime and prayer time with him, and my heart is full to bursting.

*my belly is also full to bursting, as today was move-in day to JeanJean's Bed and Breakfast.  I swear to goodness the woman has bought out every grocery store within 10 miles and will not let us leave here until we have all gained 30% of our body weight.  We are so grateful that she let us take over her home so we could be close by Parker this week. Love you JeanJean!*

Mike will be back soon from his night-night visit with Parker.  I just sent a note to Megan from Krispy Kreme with Parker sporting his Happy Hat.  Life is good.




"Your works are wonderful, I know that full well."
-Psalm 139:14

Saturday, May 19, 2012

"Happiness All Around"

In the 5 minutes since I last posted, I am at a complete loss for words.  Here it is, 11 o'clock on a Saturday night, and I just got a delivery.  FROM THE KRISPY KREME MARKETING COORDINATOR.







3 dozen donuts, happy paper hats, and balloons.
The note says, "Abby, Saw your blog.  Just wanted to send some 'happy donut thoughts' your way.  Know that 'Krispy Kares' and wishes you and Parker lots of love!  Bless you both!  etc. etc. etc" 

My sweet nurse brought it in with a rather puzzled look.  "Um, this is from the Krispy Kreme lady?"  I must have looked completely befuddled, because I am!!  Their slogan is "Happiness All Around," which I do not think could be more appropos right now!

I just shuffled two dozen of those donuts down the hallway to the nurses' station here at Northside, and the other dozen will go to Egleston tomorrow.  God bless their souls, they deserve infitinely more for all that they do.  There was much whispering and conjecturing amongst the staff after the package was delivered-- they all thought I must have WORKED for Krispy Kreme or something.  I explained the situation to them, and they were all simply amazed.  And pleased to have donuts. *as am I*

I just don't know what to say, except a HUGE thank you to Krispy Kreme, and to whoever alerted them to our situation.  I am going to go dry my pastry-induced tears and snot rockets, and eat a donut while watching Harry Potter.  That's a pretty darn good ending to a pretty darn good day. :-)

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.**

Friday, May 18, 2012

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

Thursday, May 17, 2012

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.

Wednesday, May 16, 2012

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? :-)

Thursday, May 10, 2012

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!!!!!**