Friday, April 20, 2012

Bossypants

BPP #3 (part one) today = 8/8. Part two (non-stress test) on Tuesday.

Parker did great today. He didn't want to show his face too much and kept kicking the tar out of the transducer (is that a word?), but in general he did perfectly. His practice breathing was highly complimented, as were his movement and muscle flexion. Next week we get to shake things up with a grown scan instead of a biophysical profile. Woot woot!

I had to have my blood pressure checked twice today. When I first arrived, it was high and my pulse was fast. This is most likely due in no small part to the fact that Mike and I were sucked in by the Hot Donuts Now sign at Krispy Kreme on the way down. Parker got his donut BEFORE the appointment on the understanding that he better behave (which he did. But I got some ferocious nudges after the appointment as if to say, "Hey woman, where's my follow up donut?" Booger.), and I no doubt was on some sort of sugar high when they took my vital signs. They took them again before I left, and all was well. Another Friday, another $4 parking deck fee, and another report of "everything is stable for now."

We'll take it!

It occurred to me today that I am now less than a month from delivery (!!!!!!!!!!!!!!!!). I have to start lining some things up logistically, so it is time to start taking people up on the ten thousand offers we have gotten.

I am NOT good at asking for or accepting help. One of the first sentences I was able to string together as a child was, "I do it myself." I like to think of myself as "independent minded." Almost everyone else, most especially my husband, would call it "stubborn as a mule." Whatever the terminology, it is becoming abundantly clear that I am about to receive a big fat lesson in Accepting Help When It Is Offered 101.

The most common question we get these days is, "What do y'all need?"

The short answer to this is "Prayers and volunteers to keep Jeremiah."

Apart from that, we don't NEED anything. There are plenty of people in the world who NEED things more than we do. I have all of Jeremiah's baby items ready to come out of storage. I have the most fantastic house cleaning people. I am cooking up a storm and will, by the end of next week, have 8 weeks' worth of food in the freezer. Those needs are met.

Every time someone asks The Question and is given The Short Answer, they usually raise an eyebrow and just say, "Abby. *stare* Don't be ridiculous." I usually start sweating in my armpits and/or break into hives at this point, recite the preceding paragraph, and change the subject. It's honestly not because I will think myself weak for accepting help. I hope and pray it doesn't appear that I am ungrateful to those people. I just don't feel like I qualify as a person who NEEDS anything-- I live a comfortable, and by most standards, privileged life.

Still, it doesn't make one bit of sense to ignore the people who are offering to make our lives easier. Their offers of help come out of their love for us, and I know that down deep into my soul. The day of our NICU tour, Eileen the Angelic Tour Guide gave us some advice. We are about to be thrown into a crisis which very few of our family members or friends can understand. We won't even understand it while it's happening. People will want to help, but they won't know how. It's our job to very clearly outline what we need and apologize for any hurt feelings later.

That last sentence absolutely kills me, even to type. "Clearly outlining what we need" sounds downright bossy. (I prefer to say "what we would like to have happen" because it sounds better. And because I don't have to say 'need'.) Who the heck am I to "clearly outline what we need" to people who are loving and supporting me at the worst time in my life? Won't I seem like some sort of wretched and ungrateful person by saying, "Thanks so much for offering to help. We love you, too. NOW GO *fill in the blank* RIGHT NOW! HUSTLE HUSTLE! I'LL APOLOGIZE LATER!"

It's already happened and I've hated it. I've turned down offers of parties/showers and felt like dirt. We've gotten some raised eyebrows for our "no one comes to the hospital until otherwise informed" policy, which was agonizing to settle on but is truly what we feel will be best. I had a long conversation with my friend Ali about it... she has had some mighty struggles in her time and has always maintained a graceful and grateful heart. Her advice had two parts: a) protect yourself and your family first and b) let people do things, even if you don't NEED them.

That's my homework this weekend.
1) Figure out what we NEED ("Prayers and volunteers to keep Jeremiah!" The response is second nature by now)
2) Put on my Bossypants.
3) Tell people how they can help.
4) Invest in armpit sweat catchers and hive cream.

Wednesday, April 18, 2012

Stage Mom

BPP #2 is also a 10/10 after our non-stress test yesterday. Appointment was quick and easy-- set up of the fetal monitor went much more smoothly :-), and we were in and out pretty quick.

It did take a little longer to get Parker's necessary movements/heart rate spikes. At our appointment last week, his heart rate was consistently in the 140s and spiking up to 160s when he moved. Yesterday, his heart rate was down in the low 130s and spiked above 150 only a few times.

They left me in the room by myself for a few minutes while the monitor ran. I sat there with my little Jeopardy buzzer, waiting for kicks, with my eyes glued to the monitor printout. The nurses and doctor came in to check on me at various intervals, and in between I actually found myself making some strange attempt to coach Parker into a better performance.

"Come on, P-nut, you aren't doing as well as last week!"

Seriously, Abby? All that resulted from this was a steadily increasing stress level on my part. Parker steadfastly refused to participate in my shenanigans. He was happy and comfortable and not one bit interested in moving and exhibiting cardiac acrobatics. I kept talking to him and poking my belly.

"Hello? What are you doing? I need you to move so we can get our two points! I'll get you two donuts on the way home!"

I suddenly felt VERY MUCH like the moms on Toddlers and Tiaras who give their children Pixy Stix and shout at them in the hotel hallway.

Dr. Sermons came back in to look at the printout. He scanned it and said, "You look fine! See ya next week."

"BUT WAIT!" I shouted and outlined my concerns that his heart rate was lower, coupled with the more-stomach-up news from Friday. He stood there, impassive, and waited for me to finish my tirade.

"There's nothing to worry about. I had your results from Friday before you even left that office. They're not worried. I'm not worried. He's tired today. We all take naps from time to time. He's moved enough, and his readout is reactive. His heart rate is well within the normal range. You're fine."

The curse of so many doctors appointments is that I am now convinced that I have somehow graduated from mini-medical school. I know what "normal" is supposed to look like, and I apparently can raise the red flags FOR the doctors and tell them when to worry. One of the biggest blessings I have are lots and lots of unflappable doctors who give the facts but tolerate little in the way of foolishness. I never one time have felt like any of them are not taking us seriously or are being negligent in any way. I have felt, time and time again, that they are trying their darndest to keep us calm, thus keeping Parker calm.

Parker has been a pre-natal superstar. He has flown over each and every hurdle thus far, and we have been nothing but encouraged throughout this pregnancy. I suppose I have hit the point now where anything even REMOTELY "sub-par" (in my opinion, not the experts') is a cause for worry. What on earth am I hoping to accomplish with that train of thought? Am I trying to justify the increasing worries that I have as the time gets closer?

All it took to snap me out of it QUICK was a vision of me, standing by Parker's bed in the NICU, doing some modified version of this to coax him into stardom during his doctors' examinations:



**feeling particularly convicted around the 30 second mark with the "10"s, due to our BPP scores. I shudder.**

If I EVER yell "Sparkle, baby!" at my sweet little boy, I give you leave to beat me mercilessly with whatever objects are nearby.

Friday, April 13, 2012

Reality Check

Back to the perinatologist today. Parker did great-- 8/8 on biophysical #2 (non-stress test Tuesday for the additional 2 points). Pretty quick and easy, but he didn't cooperate much for pictures. Poor booger is probably tired of posing for the camera!

They re-examined his abdomen after last week's unidentified shadowing. There still doesn't appear to be any liver in the chest cavity, and the mysterious area from last week might actually be lung tissue. We will happily take lung tissue over misplaced liver any day!!

There was more stomach up today than there has been at any past appointment. It's a fluid organ and can shift up and down pretty easily, but I still felt disheartened. This has been a rough month for some mommy friends (real life and Internet style), and it's weighing heavily on my mind.

Two mommy friends lost babies, one to CDH related complications and one not.

Two CDH babies (Jude and Killian) have been in the NICU for four months. They have both had tremendous highs and disheartening lows. Their little bodies are tired, and their families are exhausted. They have been told their fights will continue for weeks to come.

The first of my co-expectant mommies, Rhonda, had baby Esther yesterday. They were told the night before induction not to expect Esther to make it more than a few hours. She has defied all odds, is here and gorgeous and fighting so hard. She's on ECMO and has a tremendous battle in front of her.

Since we learned about Parker's diagnosis, I pretty much made it a policy to focus on survivor stories. Here and there I've come across some non-survivor stories, and as heartbreaking as they are, it's good for me. I've gotten support from mommies who watched their little ones beat this thing, and support from mommies who had to let their little ones go.

Both paths used to seem a lifetime away. Parker has been happily cooking for 33 weeks, and so long as he is with me he is warm, safe, and healthy. Unfortunately, warm-safe-happy time is going to run out in a month, and we will be in for the fight of our lives. For some reason, this all piled up this particular week and hearing, "There is significantly more stomach up than usual" today has put me in a funk.

Time to readjust our focus-
Positives. The liver is still down. He's continuing to perform well on his biophysicals. He still has 5 weeks to get ready to fight for his life. I have every confidence in our medical team (all 40 of them). We continue to be amazed by the love and support of our family and friends and complete strangers. We have been offered every type of help imaginable.

Time to go before God with our prayers-
Peace and comfort for mommies who said goodbye to their little ones. Continued strength and perseverance for the babies currently fighting in NICUs. Guidance for our medical team. Praises for Parker's "favorable outcome" predictions thus far. Prayers for Parker's stomach to get out of the way already. Courage for Mike and I.

Boo to Debbie Downer days. They are pretty few and far between, and for that I am grateful. I have to allow them to happen occasionally, or else I'll go bonkers. I expect more of them to come in the month leading to Parker's birth- I am tired, I am grouchy, I am anxious. Time to go re-read my Between the Hedges post and to count my blessings.
"Name them one by one, and it will surprise you what the Lord hath done."

Tuesday, April 10, 2012

NST+BPP= 10/10

That's the text message I sent to my husband (who was trapped in policeman training) this morning after I left my OB appointment.
His response was, "Sounds good? You can explain it later."

It occurred to me, looking back, that it probably looked like an algebra problem.

In plain English, it means that we added 2 more points to Parker's biophysical profile score (click HERE if you missed the post explaining that) today, thus putting him at a perfect 10 out of 10 for the week.

Amniotic fluid level = 2/2
Fetal muscle tone = 2/2
Fetal movement count = 2/2
"Practice breathing"= 2/2
Non-stress test (fetal heart rate spikes in relation to fetal movement) = 2/2

Week 1 of 5= perfection!

My non-stress test today was like watching a comedy show. It was the best example I have seen in a while of a doctor realizing he relies on his nurses for a whole heck of a lot.

I go to a tiny tiny tiny OB-GYN practice. It is only one doctor and approximately 5 nurses (this is essentially unheard of in Atlanta. I, however, would never have it any other way! They are like family there). Dr. Sermons worked with my mom at Shallowford Hospital when she was a NICU nurse. He's been my doctor since I was 18. He is the kindest, dearest, most wonderful man. He might weigh 87 pounds and he wears black loafer dress shoes with his blue scrubs. He is also a doctor of pharmacy. He ALWAYS smells good. When other doctors find out I am a patient of his, they say, "You are a lucky lady." ER and L&D nurses squeal "WE LOVE HIM!" when they read my charts. There's nobody in this whole world I would trust more to care for me and my babies.

He is a brilliant doctor.

Today, I learned that he hasn't had to set up a fetal monitor in... ummm.. quite a while.

Because his office is so tiny, the need to administer non-stress tests is pretty small. He had a nurse, Maggie, who was in charge of getting the whole thing set up before he came in to read the results. Maggie recently left his office (DEVASTATED), and today he decided he could get me all hooked up for NST #1 with no problem.

There was much cursing under his breath. "Where am I supposed to plug this thing in?" At one point he was crawling around on the floor, but he was bound and determined to get that thing set up himself. I laughed until I cried.

He did, however, use it as a teachable moment. I had all the new nurses crammed in my room while he got the manual and some textbooks and held a little seminar on hooking up the monitor and reading the results. At least I will be giving them 4 more practice runs at it in the coming month.

Parker performed beautifully-- Dr. Sermons had told me to have a Coke on my way down to the office so he'd be awake. Within 10 minutes we had more than enough heart rate spikes due to fetal movement, and I went on my merry way. Donut for the P-nut and a happy mama!

Back to the perinatologist Friday. Jiminy crickets.

Monday, April 9, 2012

Easter Fun

We had such a wonderful Easter!!

Jeremiah was the cutest lil' Easter bunny I've ever seen for his egg hunt at school.

Mike and I got to go to the Passion City Good Friday service to worship and remember what Good Friday is all about. LOVE being able to sing along to Chris Tomlin and David Crowder in a crowd of 13,000. No one can hear my "joyful noise."

We had a wonderful Easter service at our church. (put on your sunglasses before viewing the gigantic hot-pinkness to be seen in this photo. Still, I felt confident in my pink muumuu. You take that when you can these days!!!)


We hosted our families for Easter lunch and the now-second-generation Easter Egg hunt. I was transferring all our home videos to our backup drive this week, and I was laughing hysterically at the commentary in the background of our egg hunts. Someone (well, EVERYONE) invariably mentions that my Grandaddy used to help me "cheat" at the egg hunts by giving me hints (well, straight up directions) to the hiding places. What is endlessly amusing to me is that a) 30 years have gone by and there is still some animosity from the cousins about it all, and b) Jeremiah and my nieces (Emma Jean and Rosie) now have approximately 20 grownups shouting and pointing at all the eggs. They barely have a chance to "hunt" for anything. Suddenly, Grandaddy doesn't look so guilty, does he???

Love these munchkins.



In other news, I must point you towards a post written by one of my fellow CDH Mommies, Rhonda. She is expecting her little girl, Esther, this week (send lots of prayers their way!!). She wrote a post on Good Friday that touched my heart so deeply. Every morning that I wake up is a morning that I am closer to meeting Parker. For that, I am so thrilled. Every morning is also another day closer to knowing what we are up against. For that, I am beyond anxious.

What I do know is that God is with us every morning, and He knows our fears. While not even remotely on the same level, Good Friday and Easter took on a whole new meaning for me this year. God watched his son suffer through unspeakable anguish. Even though He knew the victory was coming, it hurt His heart. I keep holding onto that-- there will be suffering, it will hurt our hearts, but Parker's victory is coming. I wish I knew what that looked like, but I know that, whatever the outcome, it WILL be a victory.

"Not my will, but yours be done."

In the meantime, all I can do is pray, truck it to the doctor, and attempt to get the logistical details nailed down before his arrival. I MIGHT have started a Psycho Mommy Binder. More on that later. :-)

Friday, April 6, 2012

BPP #1

Back to the perinatologist today. Hooray for Fridays in the 980 Building.

I absolutely love that office, but they are usually running about 30 minutes behind. Today, we were the first appointment after lunch, and let me tell you-- we were in and out in less time than we usually spend in the waiting room! Quick and easy.

Parker was up to all sorts of antics today-- his practice breathing was spectacular, he was dancing all over the place, but the funniest part was to watch his mouth. Thanks to the wonders of 4D Ultrasounds, we were able to watch him blinking, opening and closing his mouth, and PICKING HIS NOSE.

Manners, P-Nut. He did give us a sweet little smile with his chubby little cheeks.



The ultrasound tech was cracking up laughing at him the whole time. Mike and I enjoyed getting to see him so clearly. So often we find ourselves wondering what on earth is going through his mind in there. It's abundantly clear that he is aware of his surroundings-- he is sensitive to light, sound, and pressure. Poor little guy got startled the other day-- Mike leaned down to my belly and said, "HEY!" rather suddenly. I swear to goodness my whole body got knocked off to one side as Parker jumped away from where Mike's mouth was. Geez, Dad.

We did have one brief raincloud during our scan today-- we are used to seeing, during the scan of his abdomen, a big black blob of stomach where it should not be. Today, the big black blob had seemingly split into two small black blobs, and the tech was unsure if it was an odd angle on the stomach or if it was gall bladder. She mentioned briefly that it could be liver.

Liver in chest= bad.

The perinatologist came in to scan it herself, and after much poking, prodding, and blood flow analysis they determined that it is most likely just stomach. There was some talk of the liver possibly migrating slowly to the left, towards the hernia. It's not in the chest cavity yet, but it might be on its way. We are praying that for each subsequent scan, his liver doesn't move any farther. It's not a squishy organ like stomach and intestines, and it can cause damage if it gets too far out of place. Liver in the chest cavity significantly decreases the chances that his hernia repair can be done without a patch.

Apart from that, Parker did great. We go for a non-stress test Tuesday, and another biophysical profile on Friday.

You might be asking what a biophysical profile is. Being a high risk pregnancy has yielded all sorts of fascinating new obstetric knowledge, so allow me to pass this tidbit along:



Mmhmm. Have fun reading that. The basic version is that there are 5 areas they measure-- practice breathing, movement of the baby, muscle tone as exhibited by movement, heart rate in relationship to movement, and amniotic fluid. If an area is observed, you get 2 points. If it is not, you get 0. 8-10 total, you pass.

Today Parker got an 8, simply because the heart rate portion is often done during the non-stress test (longer duration of heart rate monitoring), which will be done on Tuesdays. So long as he is passing his biophysicals and performing well on his non-stress tests, he should be set to stay in there and grow.

I did have a sense of urgency today that I need to be driving around with our hospital bag at this stage. At any given moment on a Tuesday or Friday, I could be told to go straight to the hospital. I should get on that!!!

Sunday, April 1, 2012

The Atlanta Color Run

SO. MUCH. FUN.

**these pictures are shamelessly stolen from my Aunt Nesie.

So happy to spend the morning with some of my favorite people, sporting some turquoise in honor of CDH Day!
To say that Jeremiah had a good time would be the grossest of understatements. (His shirt says "I'm COLOR RUNNING for my brother!")

He rode in his stroller for the most part, but Sister and Cousin Madi graciously offered to run him through the Color Zones. Kilometer 1 was Yellow.

Some initial "What on earth????" moments, and then he was ready to get messy!!
Kilometer 2 was the Green Zone. Jeremiah's favorite.

Kilometer 3- Pink. Jeremiah informed me that this zone was for girls only and refused to get out of his stroller. Goofball.

Kilometer 4 was the Purple Zone. I ran through with my boy!


Finish line mayhem. JB and his buddies.

Cousins Millicent and Madison. He ADORES these girls.

Sister's husband and girls couldn't make it (boo), so she trucked it along with Preggo. Love her.


When else in your grownup life can you spend a morning looking like this??




Two things to note about this picture.
1) This is probably the only side view I will allow from this point forward. Seriously?? SEVEN MORE WEEKS??
2) I was looking for an excuse to get a new stroller for Parker. I think I have one now. :-)



Best. Day. Ever.