Friday, June 29, 2012

False Alarm

I got to the hospital yesterday to a very grave-looking scenario.  The neonatologist had furrowed eyebrows, my child was screaming his head off, and nurses were putting in IVs.  The doctor explained that Parker had a bad night-- periods of desatting down into the 70s (oxygen percentage from his pulse oximeter) with no known cause.  They put him on insane amounts of support (5L flow at 100% when I got there), and it was helping, but not consistently.  Due to the acute onset, infection was suspected.  Could also be due to methadone withdrawal.

Sigh.  I was sent to the waiting room while they got his line in, and I just felt deflated.  We had been on such a strong course, rolling right along, and then WHAM!  Hit the wall.  I know everyone describes the CDH "roller coaster," and I was ready for another down to come soon, but it was still stinky.

I went back to his room and snuggled him up after his ordeals.  He was none too pleased with the IV of antibiotics (they went ahead and started them pre-emptively even before the cultures came back, better to play too-soon than catch-up), and he was DEFINITELY not pleased with his urine bag.  Yes-- we reached a new level of scrotal embarrassment... Only Parker.  Imagine, if you will, a Ziploc bag with some adhesive around the opening.  Now slap that sucker onto an angry six-week old.  The object being, of course, to get a urine sample for culturing as you cannot very well tell him to pee in a cup.  Bless his soul.  Parker's manhood has been used and abused during this adventure.

I spent all day staring at him and trying to figure out what on earth was wrong.  He was back up in the 100s on his sats, but I was disgruntled about him being on such tremendous amounts of support. I just felt like SOMETHING wasn't adding up, and the longer I sat there, the more I became convinced that something was wrong with his respiratory equipment.  Because he's on high flow oxygen, he sounds like a little baby radio set on static.  Each time they've lowered his flow, he's gotten quieter. Yesterday, he was supposed to be back on higher flow settings, but it was quiet.  Too quiet.  Added to that, the temperature setting on his humidifier (it adds water to the oxygen/air mixture to keep his nasal passages moist, and it heats the water to body temperature) was going haywire.  It jumped around about 15 degrees within a few minutes.

About that time, Parker desatted back into the 70s, even on that much support.  The nurses were befuddled.  The respiratory therapists were called in, and I said, "Something is wrong with the equipment."  They tried repositioning him, listening for flow sounds, nothing.  Again I said, "I think it's because something is wrong with his flow."  I pointed out that the humidifier had been acting up, and the respiratory therapist went over to look at it.  As she put her hand on the tube from the 02 meter in the wall to the humidifier, lo and behold, I heard baby radio static came back.  "Whatever you just did fixed it," I told her.  Then it went away again.  I told the nurse by Parker's head to listen to how quiet it was, then as the respiratory lady was trying to troubleshoot the problem and moved the right tube again, even she said that she heard what I was talking about.

Long story short, they switched out all the meters, tubing, humidifier, nasal cannula, EVERYTHING on his respiratory circuit.  Within 5 seconds his sats were back at 100.  They weaned him a bit at a time, and he still was at 100.  I was excited-- little old me was able to figure out the problem, and that's only because I spend so much time there and know how things are supposed to sound.  I have no clinical training of any sort, but I do know when something is different in my baby's bedspace.

I'm not upset about it, really, past being annoyed that we lost an entire day on something that turned out to be an easy fix.  Parker's none the worse for wear minus some free antibiotics and the shame of the scrotum sack. Doctors and nurses are trained to look for medical reasons their patient is feeling poorly, and that's what they did.  The machine was working fine all day, I just so happened to be sitting right by it when it started acting up (for what was obviously the second time, once over night causing the initial ruckus) and we were able to get it fixed and get the P-nut back in tiptop shape as soon as possible.

All of that to say, I have felt way over my head in the NICU, and Lord knows I have no knowledge to contribute to Parker's care.  Mike and I sit on the sidelines, listening to everything that is said and asking any and all questions we have.  Our questions get answered, and we feel like we definitely understand what is going on, but yesterday was the first time I felt like I could be an active contributor to fixing something.  It might have turned out to be a complete idiot thing to say "Something just SOUNDS wrong,"  but it wasn't.  Thank goodness we are in a place with medical staff who would never say, "Whatever, Mom, sit in the corner and let us do our job."  They stayed in Parker's room until they heard what I was describing, and solved whatever problem was causing it.  In the end, the simple answer was the right one, Parker is back where he started, and I have gained a tremendous amount of confidence in myself and my Mama Bear instinct.

Now, on to bigger and better things!

Wednesday, June 27, 2012

Tracker Jackers

**Here's the part where if you are a boy or if you're weirded out by breastfeeding, you should skip down a bit.

I am completely convinced, after the last 48 hours, that when writing The Hunger Games, Suzanne Collins dreamt up the effects of tracker jacker stings after dealing with mastitis.  Fever.  Dizziness.  Comatose sleep.  Intense pain.  Angry red splotches.  Covering oneself in leaves to draw out the poison.
After spiking a 103 fever early Monday, being unable to hold up my own head, sobbing uncontrollably, and creating a human salad bar with cabbage leaves, I finally gave in and got some antibiotics.  I took a day off from seeing Parker, which was terrible.  I missed sweet Avery's birthday party and had to send Jeremiah with my sister, which was terrible.  I slept for 22 out of 24 hours.  That was not so terrible, except for when my fever broke and I woke up in a pile of sweaty sheets.

Worst I have ever felt in my whole life.  Bless you, antibiotics.  Curse you, mastitis.  You are no longer welcome here.**

In other happier news, Parker has moved out of the critcal NICU and into the "swing beds."  This is a temporary stop on the way to our own private room on the B-side (step-down).  Honestly, though, his new room might as well be a suite at the Plaza.  It is giant!  It was originally designed for 2 babies, but they seldom use the second space and just keep it open as one.
Seriously, not even half of our room.  We have our own sink! And a cabinet! Woot!!

They moved Parker on the day I was so sick, and I was sad to leave NICU A without saying goodbye.  We have been parked there for 5 and a half weeks, and they are our friends.  They have seen us at our worst.  They have laughed with us and hugged us and held our hands through scary days.  Although I am pleased as punch for Parker to be progressing (say that 5 times fast), I will miss the A side terribly.

Today was my first taste of life in the swing beds... and it's really quite lovely.  We have that giant space all to ourselves (which is NOT the norm, just luck of the draw), and though it lacks windows, it has closeable doors.  It is nice and quiet and private.  The lactation specialist brought me my own hospital pump to keep bedside, so I don't have to leave to pump anymore.  I can wash and store my pump parts in the handy sink and cabinet.  We have enough space to bring in a bouncy and swing (will be trying that tomorrow!) and life is good.  The staff on that side is every bit as kind as the A side folks are.  The happiest surprise has been that our beloved Dr.Williams, from Parker's first 3 weeks of life, is over there for this week. I think it is only temporary, which is stinky.  Perhaps I can convince her there is room to stay in Parker's gigantor room.

Parker progresses nicely-- he's down to a 3 liter/hour flow at 30% oxygen.  There approaches a day, hopefully not too far off, that he can attempt oral feeds (he needs to get below a 2 liter flow first).  Penny the Feeding Lady met with us today, and gave us lots of good tips to help him get ready.  Parker got his first tastes of breastmilk on a binky, and he was most pleased. delicious.....zzzzzzzzzzz....

We are supposed to repeat this dipping of the binky exercise at least once a day, preferably several, right before one of his feeds.  Mike and I are task-oriented people, thus we are happy to have assignments that make us feel useful.  It's so funny how doing something so small becomes so gigantically important as a NICU parent.  Still, we've come a long way from the day I got to wipe his eyes and nearly fell on the floor.
And that was just a month ago!

 5 Week Birthday Picture with Mickey (from Friday)

 My view for most of each day-- we have some good talks during our snuggles.

And lest I forget-- Jeremiah spent last weekend up at our lakehouse with my dad, Anda, and some of their friends.  He had a ball, as only he can do as the only 3 year old with 6 grownups.  I saw some of the pictures taken during his boating adventures, and they are just beautiful.  I'm still working on getting the actual files, so all I have is this tiny preview, but you get the idea.
As much as my time is eaten up by my P-nut, my Bullfrog will always be my first baby boy.  I love that little man!

06-23 Lake Rabun-2

Friday, June 22, 2012

Quickest of Updates

Apologies, yet again, for the lack of updates.  This week has been busy, and I have hit the proverbial wall of exhaustion.  Jeremiah is heading off to the lakehouse with my dad for the weekend, so I will be able to get lots of good rest.

In the meantime-- a briefing on the P-nut:

--PICC line is out, meaning there are no more IVs/needles anywhere.  All his meds are oral, and the tower of medicine pumps is down to one (for his feeds).  All he has are his oxygen cannulae, feeding tube, and air vent tube.
--He is rocking it out on the feeds.  They stopped his TPN (intravenous nutrition) and lipid drips when they pulled the PICC, so he is exclusively "breastfed" now.  He, just yesterday, started getting condensed feeds of 39 ml/hr for 2 hours, then one hour off.  They hope to continue to condense them down until he gets all his milk in about 30 minutes, just like a normal baby.  Thus far, no real puke and not too much sign of reflux.
--He likes to desat when he poops.
--We have been downgraded from terror threat level orange (I think we moved from red to orange when he came off the ventilator). I know this because we have been moved across the critical NICU (WE HAVE A WINDOW!  Woowoo!) and our nurses are split between two babies.  They do not care if Mike and I change diapers or get him out of bed on our own.  My heart is happy.
--His oxygen wean, which was at a total standstill for much of the last 2 weeks, has picked up. He hung out at 55% oxygen on a 6L/min flow for a long time, and today he decided it would be a nice time to get almost down to room air (21% oxygen) and a 5L/hr flow.  Keep trucking, P-nut!!
--In the greatest news from this week, Parker's echo from Wednesday came back with a note that said "Resolved elevated pulmonary issues."  I made Mike ask the neonatologist if that actually meant what I imagined it to, and it does.


Big, giant praises for this. That was honestly the last of the potentially fatal hurdles that he had to clear, and we are so relieved.  Everything else from here on should be fairly straightforward-- SLOW, agonizingly slow, but onward we go.  Hopefully to the step-down unit sooner than later. 

Thank you all so much for your constant prayers and for checking on us and Parker.  I will do better about updating, I promise, and I will post some pictures this weekend.

We love you all!

Friday, June 15, 2012


Happy Four Week Birthday to the P-Nut!  Hard to believe.  It feels like 4 months.

First off, apologies for the lack of updates.  It's due in large part to not having much news... we were told by the neonatologist that this would be the long, drawn-out boring part of the whole thing, and it is.  We're past the major crisis moments of a CDH baby, and (barring some nasty flareup of pulmonary hypertension, which he has a mild case of) now it's just a bunch of very slow maneuvers towards home.

He's still on oxygen, and the settings haven't changed much.  This concerns me as a mom, of course, but the doctors aren't too worried yet.  They are trying to keep him as stable as possible for a while, and "stable" is a medical term for "boring."  We love stable.

His meds haven't changed too much, except now he's on methadone to try to kick his morphine addiction.  (Side note, everytime someone says "methadone," I am immediately transported back to 1999 and in my head plays, "ALL MY HEROES IN THE METHADONE CLINIC!"  Yeah, you're welcome for that throwback.  Somebody has to remember the musical genius that is was Kid Rock.)

The biggest news, medically speaking, is that he is "eating" like a champ.  Granted, he's not doing much except digesting it, but they've been able to up him to full feeds (20 ml/hr) of breast milk through his feeding tube.  There are some reflux symptoms, which is almost a guarantee with CDH babies.  Still, we are encouraged by the fact that he has tolerated full feeds.  The next step will be to start condensing the same amount of milk into shorter periods of time, simulating how a normal baby eats throughout the day instead of continuously.  He ADORES his pacifier, so I am hopeful that oral feedings, when the time comes, will not be too much of a challenge. That won't happen until his oxygen settings come way down.  Slow slow slow.

The BIG BIG news of this week, non-medically speaking, is that Jeremiah got to visit today.  He has been asking and asking and asking.  We have been saying, "Parker is sleepy.  Parker doesn't feel very well.  Parker has doctors appointments."  Basically, we felt that there was no way on Earth we'd bring him in while Parker was on ECMO, and we didn't feel too great about it while he was on the ventilator.  Now that the P-nut looks much more like a regular baby in a regular crib, we felt like now was a pretty good time.

Robin, the child life specialist at Egleston, met with me Wednesday to chat through how it would work best with Jeremiah's personality.  She spent alot of time with me talking it through, and gave me this handy dandy coloring book to take home to prep Jeremiah.

People think of everything!

He donned his Big Brother wear (t-shirt and badge from Northside).  We arrived this afternoon, and Ms. Robin met us in the lobby to get Jeremiah warmed up.  She had all sorts of exciting "doctor's tools," as Jeremiah called them, including a baby doll with all of Parker's gadgets attached to it.  She went though all of them and told him what they were for, let him touch them and play with them, and reminded him that they were all there to help Parker.  Nothing to be scared of.  

Finally, it was time to head back.  He was so very excited.  We scrubbed in and walked over to where baby Parker was ready and waiting.  He had on his Little Brother t-shirt from Nesie and Greg, and he was excited to see Jeremiah!

That's a lie.  He spent the whole visit completely zonked out.  Alas.

Still, Jeremiah was an absolute angel.  He had practiced a song to sing ("Rock a Bye Parker") and had practiced walking on quiet feet and using a soft voice.  We lowered the crib rail, got him a stool, and let them introduce themselves.

 Totally tear up every time I look at this picture.  I like how my friend Jill phrased it,
"Start of a secret handshake!"

It was a quick visit, but it worked great.  To Jeremiah, Parker has been a nebulous entity that was first in my belly and then at the hospital.  He's seen pictures of him, but until today I'm not sure he actually bought it that there was an actual Baby Parker who lives at an actual hospital.  It was a sweet, sweet time.

Our visit ended on a sour note, God bless his soul.  We went down to get lunch from the cafeteria.  Along the way, some very nice random woman gave Jeremiah a (GIGANTIC) Thomas balloon.  We decided to eat outside, and tied the balloon to a bench while we went through the line.  Upon our arrival back in the garden, not 7 minutes later, Thomas was a victim of the heat.  He had exploded.  


The situation was quickly remedied by a field trip to ToysRUs to spend his gift cards from Cadillac Jack, Dallas, and Tug.  All was right in the world after that.

Still can't believe how well this week started, and I am speechless when I think of how it ended.  There were a whole bunch of times during my pregnancy that I just wasn't at all sure we would ever be a family of four.

And here we are.
" Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."
--James 1:17

Tuesday, June 12, 2012

Consider My Monday Made!

Oh friends.  Remember the wretched day that I wound up on the local news?

Today was sort of like that. 

My phone rang at 6:45.  IN THE MORNING.  There are not many things that happen around the Knoll house at that time of day, and if they are happening, they are usually not pleasant.  My first thought was, "Oh help us, it's the NICU!"  I managed to clear my throat enough to answer the phone, and imagine my surprise to hear, "GOOD MORNING ABBY! You're on the radio!"

**insert scared-news face, except with pajamas, runny mascara, and dried up drool on my cheek*

To make a long story short, my dear friend Patti had sent a local radio station (shout out to Kicks 101.5!) an email about Parker.  Their morning show does a segment every Monday called Make Your Monday, in which they just do nice things for people.  Today, we were those people.  

You can listen to the whole thing here, so long as you promise not to laugh too loudly at me.  I have learned several things about myself from this experience:

1)  There are approximately 100 different voice inflections to use on the word "okay," and I managed to use all of them fifty times in the course of this segment.
2)  When I am not fully awake, I make up information.  I told them Mike was at work (he was at CrossFit).  I told them Patti is still a middle school teacher (she's not).  Sigh.
3)  I 1000% don't sound like I do in my own head.  In the words of one of my favorite Disney movies:

Regardless of that, it was a truly amazing start to my morning. There is still kindness in the world, there are good people with good hearts in the world, and there are sweet friends who will do sneaky things because they love you.  My friend Jill pointed out that God's glory was being spoken of on a radio station that wasn't the "Christian" one, and I think that's my favorite part of the whole thing.  

Thank you, Cadillac Jack, Dallas, and Tug.
Thank you, Patti.
Thank you, Lord, for unexpected blessings at the crack of dawn.

In other news, Parker is doing GREAT!  He's still on a very high amount of oxygen support, which is scary for us.  It makes sense, as he is still learning how to breathe and his lungs are still playing catch up, that he will get tired every so often and require more support.  He started out on 60% and has gone as low as 35%, with various fluctuations in between.  They are happy to give him as much help as he needs right now, so that he can continue to get stronger and do this on his own.  He is such a fighter!
They also resumed his feeds... he made it all day yesterday at 2 ml/hour with no puking.  Today, he's up to 4 ml/hour and still no puking.  This is VERY exciting news, as breathing and feeding are going to be the longest parts of the road to home.

We have gotten so much snuggle time with him, now that the big clunky ventilator is out of the way.  I am not entirely sure there has been a worse picture of me taken, but I don't care because I have been DYING for the day I could snuzzle that little fuzzy head up against my neck.

**how many chins do you see?  I see four.  FOUR.  Counting down to treadmill clearance.*

He's been so awake these last few days, which we love.
He also got put in a big boy crib, which is just plain cute.

Ever so slowly, he's turning into a normal baby.  We still need your prayers, though.  Drug withdrawal, feeding, and breathing are what keep these babies in the hospital far longer than their hernias.  The CDH itself wasn't much of a problem-- it's the side effects of it (compromised heart, lungs, and digestive tract) that cause the troubles.  Parker is over the biggest hurdle he was facing, but now begins the long road to recovery from all the damage done before he was born.  

Please pray for Parker as he goes through drug withdrawal. We've all seen what it can do to grown-ups, and though his withdrawal is carefully managed and monitored, it's not real fun for Parker, either.
Please pray for Parker's lungs to continue to grow and be able to support themselves with less outside intervention.
Please pray for Parker to be able to first keep milk down, then to learn how to eat without the use of a feeding tube.
Please pray for Mike, Jeremiah, and I as we go about life at home with a giant piece of it (well, a tiny little 9 pound piece of it) missing.  It is exhausting, it is hard, and sometimes it's just downright sad.

But above all else, join me in sending up big huge praises and thank-yous to God for His blessings.  On my way to the hospital for Storytime Shift tonight, Matt Redman's "10000 Reasons" came on the radio.  Summed up my day perfectly... Under normal circumstances, being woken up at the crack of dawn would put me in an ugly place for the rest of the day.  This morning, however, my heart was full to bursting before I'd even had my coffee.  It's amazing how, when you allow yourself the correct perspective, the list of people and things and situations for which you can thank God (from whom ALL blessings flow) grows and grows and grows.

"For all Your goodness I will keep on singing, Ten thousand reasons for my heart to find." 

Saturday, June 9, 2012


I think all CDH parents take this picture when the day comes.

Extubation day!!
Just when I thought we were ready for a nice, relaxing weekend-- I walked in to the NICU today to find my P-nut with no breathing tube, some high flow nasal cannulae, and CLOTHES (hospital clothes.  Must rectify that asap)!  For the briefest of moments, I was unsure that I was in the correct bedspace.

Nurse Lauren had spoken to Mike this morning, and mentioned that extubation was a possibility today.  It was also a possibility yesterday, and it didn't happen.  I figured today would be the same way.  I was still shocked to see it was true!  I could see his face!  His mouth!  He was working with a pacifier!! (which, I might add, is vanilla scented.  I did not know such gadgetry existed)

He doesn't quite know what to make of the pacifier.  I can't blame the guy-- he's had a tube down his throat for three weeks.  He gave it a few good sucks, but mostly he just held it in his mouth.  The fact that he is even remotely interested in it is good news-- CDH babies are notorious for oral aversions and I am hoping to avoid as much of that as possible.  Plus, learning to suck on a paci while breathing is key in the quest for eating one day.
He did alright on the oxygen.  He's on a huge amount of support right now (60% oxygen and 6 liters/minute flow), which is okay for now because his poor body is unsupported for the first time. They skipped CPAP (which would have been the traditional first step after ventilation) altogether, because it aggravates all babies and irritable babies usually don't do well at all with it.  Parker definitely qualifies as "irritable."  You can see evidence of this by his lack of enthusiasm for snuggles with mom today.

He was foul humored ALL. DAY. LONG.  When you look at it, nobody can really be surprised.  Think of all that he has been through in three weeks-- grown ups would dissolve into a pile of self -pity and loathing after day 3.  On top of it all, he is in severe morphine withdrawal,  Yep... I have a drug addict on my hands.  He's been on huge amounts of morphine for sedation and pain management, and he burns through it exceptionally quickly.  While he was on a constant drip, it wasn't so bad.  Now that he's back to scheduled bolus doses, he's feeling it.  And, like any good junkie, he gets real mad real quick when his "high" wears off.  They upped his bolus amounts today, and he settled down a good bit for the afternoon and evening.  Poor little booger.

So proud of him.  Such a huge step... and it might be a temporary one.  Lots of babies come off the ventilator and wind up right back on hours later.  Parker did okay today, but every time he pitched a fit, his oxygen levels plummeted (everyone's does, we all just don't have handy red lights strapped to us that tell a monitor to start beeping).  Because he had to start out on such high levels of support, he doesn't have much space to get extra help if he needs it.  If he isn't able to keep his oxygen levels up consistently, fits or no fits, he will go back on the ventilator for a while more.  We will not be upset if that happens, because he has gone WAY above and beyond our expectations this week.  I don't want to push him to far too fast and wind up backtracking!!

Lots of big changes for Parker this week.  Lots of big changes on the horizon (a big boy crib, trying feeds again, and a possible move to the step down NICU in a couple of weeks!).   Lots of big, giant, huge praises for the miracle that he is.  His little life has already been so much more than we imagined, and I can't wait to see what God's plans are for this little one!

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Please, dear friends who have offered up so many prayers on Parker's behalf, join us in praying for his CDH lady friend Bonnie (aka "Baby Bee").  She was born Thursday, and is currently on ECMO in Charleston.  She's feisty, and we love her.  Click HERE to follow their story. 

Friday, June 8, 2012

Walking on Sunshine

*because there's just not any other song that conveys this feeling of unbridled joy*

Happy Three Week Birthday, Parker!  Happy Holding Day, Mommy!

It was magical.  It was delightful.  It was mildly terrifying.
I sat in a chair and had pillows shoved all around to make a happy little nest.  Then, two nurses and a respiratory therapist began the procedure of moving Parker into my arms.  The medicine pump tower had to be moved.  The IVs and tubes had to be gathered.  The ventilator tubes had to be secured.  The baby had to be moved.  The IVs and tubes had to be settled.  The ventilator tubes had to be taped into place.

And then, we sat there.

And sat there and sat there and sat there.  I got to hold him for about two hours, during which I told him all about our upcoming trip to Disney World.

**Yep, you heard that.  We ARE going to Disney World, dagnabit.  How do I know that?  Because the neonatologist confirmed that we are NOT in the land of a 50-50 shot anymore.  He pronounced Parker "Expected to survive (with 80 legal disclaimers inserted here about no guarantees and whatnot)" when Mike asked him yesterday.  I am not sure I have ever heard sweeter words.**

Here's the somewhat boring medical update:
-IJs removed today (these were the temporary lines in his jugular after he was removed from ECMO.  They were used for central access)
-PICC line inserted from left foot (this will stay for a looooooong while- it is now the central access)
-Morphine drip discontinued, bolus doses every 2 hours.  He's still on a pretty hefty amount, but it will hopefully be weaned down as time passes.  He still gets regular Ativan doses to take the edge off.
-Talk of possible extubation (off the ventilator) next week.  This will be a huge step!
-Tried to start feeding breast milk yesterday.  3 cc/hour.  Tiny tiny tiny amount.  Major puke-age.  Tried it at 1 cc/hour.  Tiny tiny tiny tiny amount.  Even more puke-age.  Epic fail on day one of feeding. His little belly just isn't ready yet, and that's fine.  We will try again soon!

My dad and Mike's mom visited yesterday.  My sister and her husband visited today.  It was nice for Parker finally to start meeting his family!

You know what else is nice? 

Loved this day.

Thursday, June 7, 2012


Parker's Goals for this Week:

1)  Lose foley catheter, avoiding drama in the process
2)  Get rid of some medicines
3)  Clear stomach gunk

1-- check!! It came out today, no bleeding, no signs of permanent damage, and he's peeing great on his own.

2-- check!!  Milrinone (a medicine that helps his heart beat stronger to force the blood through the vessels) is all gone.  Morphine drip is already cut in half-- he will be put on bolus doses instead of a constant drip as soon as possible.

3-- check!! They have turned off the suction to his Anderson tube, which has been in place since birth.  Its original purpose was to pull out all the air and bile from his stomach and intestines, keeping them from taking up chest cavity space and also making them easy to move during surgery.  Since surgery, the tube has been sucking out the bile that was backing up into his system, but now he's pooping and everything is moving along nicely on its own so the tube is no longer necessary.  They left it in with no suction today, only gravity, and should pull it out tomorrow. 

All three of these things combined mean that Parker SHOULD start attempting feeds pretty soon!  They will start him with a feeding tube and approximately 3 drops of milk a day.  I am not really exaggerating... there is no telling how his digestive system will respond to stimulation of any sort, and reflux is almost guaranteed.  Still, I am anxious to start down that road!

I am also anxious (understatement) to hold him!!!  It has been 3 weeks and I am in dire straits.  Now that he's less scary to me, I am ready to scoop him up and not let go.  Methinks that is frowned upon in the NICU, so I will wait for clearance from the doctors and nurses.  It cannot come soon enough for me, but I also carry around a large fear of everything going to hell in a handbasket the second they hand him to me.  It's coming, hopefully sooner than later!

His ventilator settings are ridiculously low-- so low that they call it the "holding" settings where the machine is really not doing too much for him (let me see if I get this right-- oxygen level at 23, rate at 15, pressures at 21 and 7).  He's breathing over it really well, and his blood gasses are great.  They won't take him off the ventilator anytime soon, though, because they want to be absolutely sure that he can handle it before they extubate.  I am more than okay with that-- I've come to look at the ventilator the same way I looked at ECMO. Nobody wants to end up on it, but when it's time to come off, you realize how nice it has been to have control of the situation.  We're a ways off from that, but it's on the radar since Parker has had such a good week.

I'm not quite sure what to make of this good week.  Mike and I are ever so slowly starting to feel more confident that he WILL come home-- we made it past ECMO, past surgery, and his hypertension situation isn't currently a concern (per his surgeon.  Am going to get neonatologist's opinion on that tomorrow).  I know he's still on a ventilator, still hooked on drugs, and has to learn how to eat.  I get it... but we lived in "our child has a 50-50 shot at survival" for so long, and I am not quite sure if we are still there.  I don't feel like we are, but I'd like somebody else's opinion on it.  I know there are no guarantees, there is no set timeline, and it could all change at the drop of a hat. Fine.  I've heard that for 6 months.  I just need somebody to confirm that we've made as much progress as it FEELS like we have!!!

Whatever the answer to that question is, we are so proud of our P-nut and his fighting spirit.  I had Storytime Shift tonight, and I spent the whole time watching him sleep (peaceful baby sleep, not doped up baby sleep) and marveling at all that he's done in less than 3 weeks.  Love him so.

Monday, June 4, 2012

Tummy Time!!!

Sorry for the skipping of posts-- I had Storytime Shift two nights in a row, which is tiring but worth it!!

The P-nut continues to do pretty well post-surgery. His heart rate is higher than it has been, and he is having off-and-on poor blood perfusion to his hands and feet. These things could just be related to the body's response to the trauma of surgery, or there might be some infection. We are waiting on some culture results to hopefully rule that out (the initial results at 24 hours were negative, but they will watch it for 5 days).

From a respiratory standpoint, he is improving greatly.  Today he was down to 28% oxygen (room air is 21%) with a rate of 35 breaths per minute.  By all accounts, he continues to have good looking chest x-rays, with some fluid accumulation in the left lung area... That's to be expected, now that there is a big gaping space where stomach and intestine used to be.  I will try to get a picture of the new and improved x-ray tomorrow!  There's not so much fluid that they need to draw any off, and the hope is that as time goes by, that extra fluid will reabsorb and the left lung will fill in.  Patience patience patience.

Other than that, we just continue to see how he progresses.  Test test test. Wait wait wait. This is our new routine!! Our goals for this week (we Knolls love our goals) are to wean down the ventilator (while maintaining good blood gasses) and to come off the morphine drip. The doctors are ready to wake him up a bit, and I am excited for that. I just hope his discomfort is not too great in the process. We also hope to start seeing the gunk getting sucked from him tummy turning from green to clear (gross, I know. Apologies)

Once he gets rid of some medicines and has clear stomach gunk, we will be ready to start feeds through a tube.  Oral feeds will come much later, after we see how his digestive system responds and after he is able to breathe on his own.  Still, I am excited for the next step-- it might happen as early as next week, if the medicines can be weaned down this week.

The pulmonary hypertension continues to loom in the background.  His echo from Friday didn't show too much change in an either positive or negative way.  We are hopeful that as this week passes, we will have news that his hypertension is on the way out!  Speaking of out, he might be getting rid of his foley catheter soon.  Please, join hands and dance around the campfires that we can finally put the nether-region drama to rest!!!

That's about all the news I have.  His nurses have been repositioning him a lot over the weekend, and he is tolerating it extremely well. I know he must feel better to be off his back and to have his neck turning in all directions.  He spent most of yesterday and today on his belly, snuggled up with Mickey Mouse and happy as a clam.  I was happy to see his back for the first time!!

I shall leave you with a quadruple dose of cute--

Parker on his belly

Parker's little diaper fanny (I am a sucker for diaper fannies)

A totally open mouthed drooly happy sleepy Parker (so dark!  Yikes!)

And my sweet and precious Jeremiah, in his pajamas and singing his good night song for Parker-- with the sign language (sort of).  I played it for him during Storytime Shift, and it just melts my heart!

Saturday, June 2, 2012

"Praise over Glaze!"

My friend Tiffany coined that phrase, and I think it is most appropos because Parker is OFFICIALLY REPAIRED! *happy dance happy dance (add shoulder shimmy from dear friend Ali)*

Yesterday was one of the longest, most exhausting days of my life... but at the same time, it was absolutely chock full from start to finish of blessings.

Mike and I got the "official" call Thursday night telling us that surgery was booked for lunchtime Friday.  (I was secretly pleased by that news as it gave us some wiggle room in the morning to get ourselves and Jeremiah squared away.  Mornings are not pretty around here.)  We got up, got dressed, and dropped JB off at Naner's house (my sister) to spend the day.  He decided he needed to take his fireman hat, and he sent Parker some donut love.

Mike and I stopped and got some donut love.  It's funny, with the hundreds of donut pictures we have (literally... hundreds!  Still boggles the mind!), there weren't any of Parker's parents.  We solved that problem right quick. 

I think my favorite part of this is  how many comments I got about my donut being bigger than Mike's.  I could say it was just the perspective from the camera but I spent most of my day saying, "My donut is bigger than your donut" and laughing like a 9 year old.  My other favorite donut related comment from yesterday was a caption to a donut picture:

"For Parker on his hernia repair surgery day.
And because CDH babies are awesome.
And because CDH is stupid.
And because holes belong in donuts and NOT in Babies' diaphragms."
--Ryan Yaun
(I think this should be a bumper sticker or a T-shirt or both)

We went back to visit with Parker pre-op... he was knocked out, but we were happy to spend a couple of hours with him before he got taken back.  Here is his official Two Week Birthday Picture with Mickey Mouse (someday I will put up the progression of his weekly Mickey photos). 

See what I mean about the difference between happy baby sleep and drugged baby sleep?  Still, we were grateful to learn that he had a restful night before surgery, and that his ventilator and medicines had been continuing to come down (though they will likely go up for a while post-surgery).

We got the call that they were ready for him, and it was time to load him up into the transport isolette.  
It was the most nervewracking 10 minutes of my life.  (I don't imagine it is any picnic for the nurses, either.)  Parker has been in that bed since he was 3 hours old.  Minus his ride from Northside to Egleston, he has never been on a field trip.  Loading him up with his 25 wires and IVs was quite a process.  By the time we got rolling, we looked like this:

Scary, much?  That huge tower to the left are all of his medicine pumps.  Yep- he's on THAT MUCH MEDICINE.  On his actual cart are the monitors and the travel ventilator.  Parker is crammed into that isolette... he's the Goliath of the NICU as it is and this tiny plastic box was a little cramped what with him being swollen to twice his size and having so many attachments.  Still, it served its purpose quite nicely and we took of to the OR through the back secret hallways of the hospital.

It would not be a day with Parker if we didn't have some sort of drama, which came as we loaded up onto the elevator.  There's a pretty good gap between the floor and the bottom of the elevator, and that giant tower of med pumps got caught in the gap.  It very nearly toppled over, which would have been complete disaster.  Thankfully, our nurse was able to save it and we carried on without further incident.  We checked into the OR and they let us kiss him goodbye before they took him back.  I did okay until I saw the Parker Mobile disappear through the proverbial double doors and then I ALMOST lost it.

I don't know that there's anything harder than letting your child go through double doors of any sort and watching them swing closed, separating you from them.  It happens at preschool when you are trapped in the Mommy Mobile during carpool with the honking minivans and you take just a moment to pray, "Please, Lord, let my baby be okay without me!"  Double doors to surgery are a whole new level.

We got shown to the waiting room, where the nicest surprise ever had been left for us.  Mary Joy, a CDH grandmommy who lives near Atlanta, had dropped a gift off for us that morning.  I have never met Mary Joy (still haven't, even after this!).  We are Facebook friends through the CDH community.  The fact that she took time to drop by the hospital and leave us a gift to encourage us, "strangers", is just amazing.  She handmade at least 10 blankets for Parker, and enclosed a "hope" Willow Tree angel.

 There was also a letter explaining how her journey  with her grandson's CDH had impacted her life, how God had carried her and her family through, and how she now spreads "hope" to other families.  I just boohooed reading about it and thinking of how kind she is.  I am most definitely going to try to be like her when I grow up!!

We waited, and got some occasional updates.  After about 2 hours, Dr. Parker came out.  His first statement was, "He loved it!"  Parker did great!  There was very little diaphragm on the left side, and it was obvious pretty quick that laparoscopic surgery was not going to do the job.  Dr. Parker put in a double patch-- part of it is GoreTex, which will keep everything down for now.  There is also a larger mesh panel, which will encourage scar tissue to grow in around the plastic patch.  The plastic will not grow with him (obviously), and the mesh panel/scar tissue should help unite the whole shebang as he grows and keep him from reherniating.  We will be visiting Dr. Parker every 3 months for the first couple of years just to keep an eye on things and make sure there are no signs of pulling away.  He will also be keeping an eye on the right lung mystery, and is ready to operate on that if it ever starts to be a problem.  Dr. Parker was pleased with what he found and pleased that everything fit back where it was supposed to go.  If he's happy, we're happy.

We waited for the call that it was okay to go back to the NICU after Parker was moved back into his bed.  I was quite afraid of what we would find, incision wise.  I have seen pictures of some big scary gashes across tiny little chests, and I was nervous.  Imagine my surprise when we saw this:

It is SO not what I was fearing.  No staples or Frankenbaby.  It will get worse for a few days, as inflammation sets in, but I think it looks great to have been such massive surgery.  We are going to tell him to tell the other kids that he was involved in a knife fight in the NICU.  Or a shark attack.  Whatevs.  He was resting comfortably, so we read him a story and headed out.  Longest day ever.

We stopped at Doc Chey's in Decatur and celebrated with my first Post-Baby Beverage.  Can't think of a better day to celebrate....  Happy Surgery Day!  Happy Two Week Birthday, Parker!  Happy Donut Day!  (it was also the birthday of FIVE friends and family)  We came home, fetched a stinky sweaty and happy Jeremiah, and all proceeded to sleep for 12 hours.

(twelve hours of sleep is a beautiful and sacred thing. Twelve hours without pumping is NOT, but it was worth it just this once!)

We were told to expect the first few days after surgery to be pretty bad for Parker, as they would be for anyone.  Hopefully, sooner than later he can start his LOOOOOOOONG road to recovery-- learning how to breathe, how to eat, and how not to be hooked on drugs.  With this behind us, though, we feel like we have taken a pretty giant step!

Thank you so much for the thoughts and prayers and donuts yesterday. I had several people ask how we were holding up, and the answer was "Surprisingly better than anticipated."  The whole journey thus far has been that way-- without fully understanding how, Mike and I have made it this far and feel pretty good.  We are tired, which is a minor understatement, and we have our moments of sheer terror, but if you look at the greater whole, we are okay.  More than okay, actually.  We are strengthened and renewed every morning, ready to take on whatever is coming that day and ready to juggle the 800 balls we have in the air.  Before Parker was born, I chose "his verse" that I felt would serve him well throughout his life (Jeremiah's verse is Jeremiah 29:11).  Strangely enough, it has served me just as well during the last two weeks.

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand. 
--Isaiah 41:10 

Thank you, Lord, for your grace and mercy.  Nothing is impossible for You!