Sleepy Boy... and Pregnancy Dreams

Went to see Dr. Sermons today-- all is well. I was complimented on my weight gain (how often does a girl get to say that??). He assured me that, despite feeling otherwise, my contractions are not worrisome until they become regular and I can't get them to stop by moving. I was given the Orange Drink of Doom for next time. *shudder*

He did an ultrasound on his "POS machine" today. (I think this brings our grand total thus far to 13 from various doctors). He cusses that machine every time-- he says it's basically only good for seeing if there's still a baby in there and if it has a heartbeat. After being at the super high tech perinatologist, I'd have to agree! Still, I got to see sweet Parker's face, looking all sorts of alien like:


He must have been sleepy today-- he kept rubbing his eyes:




And then he let out a HUGE yawn. It was adorable. (even if he is mine)


**I guess this could also be construed as the drama queen pose-- head thrown back, hand on the forehead, wailing. Let's go with sleepy baby boy.**

Speaking of sleep and baby faces-- I woke up this morning with what felt like a whole new outlook. It came, I am almost ashamed to say, from the most ridiculous dream about... TARGET. (???-- I know... bear with me.)

In this dream, I somehow managed to deliver Parker via c-section in the middle of SuperTarget. This was not abnormal, as everyone went on about their business around me. Parker was immediately whisked away, and I was told to get dressed and head to the checkout line. I jumped right on up and put on my pre-pregnancy pants (this seemed stranger to me than having surgery in the Target) and headed to the cashier. There, waiting for me on the conveyor belt, was Parker. He was swaddled, and had no tubes except a feeding tube in his nose. Somehow, in looking at him, I understood that in the amount of time I had spent getting dressed and walking, Parker had had his surgery and was ready to go home. The very kind checkout lady informed me that the feeding tube could come out in 24 hours and that I was free to go.

So why did this dream have such a huge impact on me? Because I SAW him. He had a headful of dark hair and dark dark eyes. He looked right at me. He knew who I was, and that I would take him home from the SuperTarget and love him forevermore. It sounds so completely stupid when writing it out, but the main point it this:

From the beginning of this pregnancy, the situation has been tense. There was no detectable baby on the first ultrasound. Then there was a baby but no heartbeat. Then there was a baby with a heartbeat AND a birth defect. It's been one thing after another, and Mike and I both have had a hard time getting into the "groove" of it all. Feeling him move and kick has been a huge help, seeing him on ultrasounds has been a huge help. For some insane reason I cannot explain, seeing my imaginary baby on a conveyor belt at Dreamland SuperTarget helped. I woke up, for the first time in the entire 24 weeks I have been pregnant, feeling 100% connected to my precious baby Parker.

Pregnancy hormones are a beautiful thing. I can only imagine the number of furrowed brows on y'all's faces right now... let's just sum it up with

TODAY WAS A GOOD DAY! :-)

CDH... We're not alone!

When we got Parker's diagnosis, neither Mike nor I had ever heard of a Congenital Diaphragmatic Hernia. Upon further research, we now know that CDH is just as common as spina bifida. It has its own Awareness Day and Ribbon (March 31, turquoise). There is a HUGE community of people who have been through this and are more than willing to offer assistance, support, advice, etc.

I spend a LOT of time these days reading survivor blogs. I quickly realized that reading the WebMD and "Dr. Google" information was a scary, dark, yucky place to be. I instead Googled "CDH survivors" and have been much happier. Not only do these babies have happy endings and normal lives, they also help give me a good idea as to what Parker's early days will look like. Every CDH baby is different, but there are some common threads across ALL CDH stories-- NICU stays, GoreTex vs. pig tissue, re-herniation, ECMO, etc.

**side note-- I have realized in the past two weeks that, when talking to people about Parker's condition, I assume they have any idea what on earth I am talking about. I must realize that they do not compulsively read CDH blogs and therefore are not familiar with such things. I intend to have a FAQ post next week!**

I've made several new "imaginary friends" through the online CDH community. There are lots of webpages, forums, and whatnot dedicated to it. I lurked there for about a week before I swallowed my pride and introduced myself. So glad I did-- I'm not sure what I thought I was hiding from or why I was hesitant to put myself out there. All I have gotten, since joining these groups, has been promises of prayers, lots of advice, phone numbers, support, and shared joys/uncertainties from fellow expectant mommies.

Perhaps the most pleasant surprise I have received thus far came in the mail this week-- a huge box from an organization called CHERUBS. They are dedicated to CDH awareness, support, and research. I was completely blown away by the "welcome kit" they sent:



Included were a tote bag, receiving blanket, hand knit hat and booties, disposable camera, footprint molding kit, CDH bracelets, board books. chap stick (for little lips being stretched by a ventilator), travel size toiletries, hand sanitizer, a lock of hair holder, a journal, some cherub wings, and a 200 page booklet with useful information gathered from other parents. Every single item bears a sticker: "Donated in honor of" or "Donated in memory of" and a baby name.

Such a thoughtful gift-- not only the items but also the feeling of community and support they bring. We certainly are blessed to have so many people rallying around us, some of whom are complete strangers... well, not so much strangers anymore!

Off to see Dr. Sermons tomorrow. It seems my appointments with him, which are regular OB visits, are pretty uneventful these days. I'm hoping for no news is good news-- we are fast approaching the dreaded glucose test (GAG) and I have been having some fierce contractions (probably Braxton Hicks, but I am on edge these days). Will update later!

Between the Hedges

**This post is a rather pathetic attempt to put the blessings I received at church on Sunday into words. It is also being posted so that, in times of struggle, I can look back on it and remind myself to stop acting ugly.**

We are sort of in a lull between doctors for the rest of this month, so I am going to take this time to answer some of the most common questions I get these days.

First and foremost-- How on Earth are you maintaining this positive outlook and how is your faith in God surviving?

The simple answer to this is easy-- it's not me. I didn't understand this fully until church on Sunday. I very much felt God's presence with me, which (as I mentioned on Facebook) is virtually impossible to describe. First off, we sang "He Loves Us", which I referenced two posts ago (wave your donuts in the sky, people!). Secondly, we sang two more songs people have sent to encourage me-- "I Will Rise" (thank you Nesie) and "Blessed Be Your Name" (thank you Erica). To top it all off, the sermon was delivered by a guest speaker named Dean King. His daughter, Olivia, has been in and out of hospitals for 10 years with liver failure. He spent an hour talking about how the power of prayer has carried his family along... and suddenly everything clicked.

**I take zero credit for what you are about to read. It's all Dean King.... I just made some ridiculous drawings since you weren't in church to see his illustrations with real people**

There's a "hedge of protection" around people who live a godly life (Job 1). What's a godly life? Galatians 5:22 outlines 9 aspects of the fruit of the Spirit (thank you Margaret for the correction-- though I know better, I ALWAYS say "fruits"). These are things given by God, sort of like qualities of His "personality",  that we should do our best to maintain and exhibit to others. They are love, joy, peace, kindness, faith, gentleness, goodness, self-control, and patience. We live our godly life, and outside forces can't hurt us.




**Yep-- There I am, in my fabulous purple dress and sunglasses. Completely protected from scary things like grief, fear, anger, doubt, etc. etc. etc.**

Problem is-- I don't know anyone who continually exhibits all 9 of these qualities all day every day. In fact, I'd say it's downright impossible. When any (or all) of those pieces fall away, we become easy targets for outside attacks. This is especially true in times of crisis, when it feels like the whole world is pressing in and we have no chance at all to fight back. Safe to say, we here at the Knoll house have a lot of holes in our hedges these days.


**Despite still looking fabulous, I am not happy here in the hole-y hedge. It's a scary place. Missing from this picture are my primary areas of failing--FAITH in God's plan, PATIENCE for that plan to get carried out in God's timing instead of mine, PEACE in God's provision for our family, and JOY in the blessings I forget to count.**

I know what you're thinking-- are those of us who allow holes to form in our hedges then left to flail about and let ourselves be destroyed? Hardly. Enter Ezekiel 22:30-- again, speaking of a hedge (around a city this time). This one, sure enough, has holes due to the people inside it letting the godly life slip away. God says that He searched for someone to fill in the gap in the hedge, so the city would not be destroyed. Translation-- when our hedges are weak, other people can step in and fill in the holes.

How?

PRAYERS. Support. Phone calls. Text messages. Clicking "like" or leaving comments on Facebook statuses. Hugs. Babysitting offers. Chicken nuggets. So on and so on and so on. Suddenly, the Knolls are no longer easy targets.


We are surrounded by countless people. If you're reading this, pick a stick figure and know that you are part of the "human hedge" around us right now. Y'all are the reason we are carrying on, and the reason we can continue to see God's goodness. Your thoughts and prayers act almost like a blood transfusion, strengthening us and giving us the things we lack. Trust me, there have been times over the last several weeks that I have asked myself, "Why are you so okay? Shouldn't you be freaking out more? Where is your anger? FLAIL ABOUT AND SELF DESTRUCT, SELF!" Problem is... if there are holes that allow the darkness in, they get filled up pretty darn quick by others who are stronger than I am at that particular moment. Filled up by YOU.

And you know what-- any good Dawg fan can tell you, being between the hedges at Sanford Stadium is like being on holy ground. After experiencing first hand how it feels to be in the midst of God's protection, fortified by the love and support of so many, I can tell you-- between the hedges is a holy place indeed.

"Bajeezus"

Parker's profile at 21 weeks.


We returned to the perinatologist today. Given that this was our first return visit since The Bad News Day, we were a bit apprehensive. We've been riding a wave of good news for a month, and while I know at some point it is going to come to an end, I was very much hoping today was not that day.

Sure enough, baby Parker performed just as he was supposed to (and yes, got a donut on the way home. It's working so far!). It was really a rather easy visit-- measurements taken and a general Q&A session about what comes next. The happy news is that Parker is measuring exactly on track, with a slightly enlarged head (have you met my husband? Have you seen my first child? This is not surprising news). For now, his liver has not herniated-- just his stomach and some intestine. This is the best case scenario, but it can change in an instant. His heart continues to be his best feature. Both the ultrasound tech and the doctor made reference to how lovely the four chambers are. You know what-- we'll take it! Parker has settled bottom down directly on top of my cervix, which results in some not-my-favorite nerve pain when he shakes his moneymaker. This happens quite often... so thus far we know Parker is a dancing fool with a giant head and a beautiful heart. I love him so.

The rest of the visit was spent with Dr. Feng (Dr. Eller was unavailable today) giving us a chance to ask some questions. I mentioned that we had about 1000, and he said, "Bring it. We can stay 'til midnight. Whatcha got?" I heart doctors who don't shove you out the door.
What followed was a preliminary estimate of what the next 5 months will be. Here's a rundown:

1. *and I quote* "We are going to ultrasound the bajeezus out of this baby." It's not often that you find yourself faced with a little Asian man in a lab coat dropping such terms in a distinctly Southern accent. Still, he wasn't lying. My entire last trimester, I will be going in for TWICE WEEKLY ULTRASOUNDS (and stress tests). That's 24, plus the 8 I've already had at my regular OB, any more Dr. Sermons wants to do, plus the cardiologist visits. For serious, y'all. "Bajeezus."
Essentially, the goal is to make sure Parker is continuing to grow on track and that nothing is aggravating him.

2. My one and only job between now and May is to stay pregnant. Check. So long as Parker stays in there, he is perfectly safe and happy. If we can make it to 39 weeks (May 19th), we are in great shape.

3. At some point in my marathon of perinatologist visits, they will call in our neonatologist. His job will be to oversee Parker's care post-delivery. Also at some point towards the end, we will meet with the pediatric surgeon. It's likely we will go on a tour of the NICU. (Here's the part where I miss my mom so much it hurts. She was a NICU nurse, and I would be toting her along to each and every one of these meetings for her input. I'm grateful, now, for those times she took Sister and I to work with her-- I've been in NICUs and I know how scary they look, but also what miracles they are capable of performing.)

4. Despite my 5000 doctor's appointments between now and May, the most important thing to remember is that, at the end of the day, it's all guesswork. Until he makes his grand debut, there is no telling how his first few hours will go. He could look great on all the prenatal diagnostics and then bottom out. He could look awful on the diagnostics and come through with flying colors. He could fall somewhere in between. We just don't know.

Why, then, must we go through this rigmarole before he's born? A logical question. The doctors want the best idea of what they will be dealing with, even if it turns out wrong. They want to be prepared for any and all contingencies, and Lord knows I want that as well. On our side of things, it gives me a feeling that I am actually doing something. There are zero medicines I could be taking, no acupuncture rituals, no yoga antics that will change this. The benefits of in utero surgery have not yet been proven to outweigh the risks. So, we haul ourselves down to Building 980 and shell out the $4 parking fee every time with a feeling that we are at least doing SOMETHING. Plus, getting to see Parker's sweet self makes it worth it.

CLOSING THOUGHTS:
1. Completely unprompted by any questions by us, two separate medical folks told us today that Dr. Videlefsky is the right man to be seeing. I had, quite sadly, allowed some doubt to creep into my mind after last week and allowed some of my positive thoughts get sidetracked by what I am sure were kind intentions of others. I never mentioned these doubts at the doctor's office today, yet on two separate occasions different people said, "Oh, you saw Dr. V? Then you're in good hands." I feel quite certain that these were tiny little answers to big old prayers-- all I can say when I go before God is, "Please, bring us comfort and guide us to the right people who will help us."
Done and done.

2. I almost went to jail today. Sure did. There was a bit of a backup in the waiting room today. In any sort of obstetrical establishment, IT HAPPENS. Babies do all sorts of unexpected things that require doctors to veer off schedule.
Enter Angry Pregnant Woman.
She arrived, sat down with her husband, and started to fidget. She engaged the couple next door in conversation and asked, "Well, how long have you been here?" They answered an hour.
Within minutes, APW had pulled out her phone and called her midwife. She then proceeded to shout, HONESTLY SHOUT, into her phone so that all of us in the waiting room were party to her rage. Some highlights:
"Do I need to have this ultrasound today? I am here, and the wait is an hour. I am 38 weeks pregnant and will have this THING in 2 weeks anyway, so I don't see the point of waiting. *pause* Is it going to be retarded? Is that why I am here? Then what's the point? This is ridiculous. Blah blah rage rage."
Her husband, understandably mortified, attempted to shush her but she wanted none of it. She simply could not be bothered to wait a while longer to be sure that her baby was healthy and ready to be born. I. Was. FUMING.
It took everything I had not to tell her to shut the devil up because I, not even a month ago, was the cause of a big old backup at that office. What was supposed to be a 30 minute scan turned into a 2 hour nightmare that completely upheaved any idea I had of a normal pregnancy and a healthy baby. Looking back, none of that would have mattered in the slightest to her. My hope is that she was just having an exceptionally hormonal grouchy day and that she does not intend to refer to her child as a retarded THING. Thankfully we were called back not too long after that, and I was unable to shove her cell phone down her throat. Or to smack the "bajeezus" out of her. It's a technical term. :-)

Afflictions Eclipsed by Glory

Today was our initial meeting with our pediatric cardiologist, Dr. Videlefsky. I asked Dr. Sermons yesterday what he thought of him.

Me: "Is he a nice man?"
Dr. Sermons: *lengthy pause and stare with his one good eye* "Um... He's... brilliant."
(Mike and I busted out laughing)
Dr: "He may not be friendly, but he is The Name. If you need help with a baby heart, that's who you go to."

In the grand scheme of things, I'll take brilliant over chatty.

We met with him today, and walked out of his office feeling approximately 100 lbs lighter! He may not be the most touchy-feely guy I have ever met, but he DEFINITELY knows his stuff. In his own way, he was extremely comforting. And in his own words, Parker has a (imagine the South African accent here) "magnificent heart."

All things are formed perfectly. CDH babies (that's what the cool kids call babies like Parker) have increased chances of heart problems of a certain nature. So far, NOT PARKER! The size is perfect- no squooshing from the stomach and intestines that have taken over the chest cavity. The heart is pushed over to the right a pretty good amount, but he feels like it's not going to move anymore. All arteries and veins are pumping good blood volume (this he called "beautiful squeeze!"). There are no holes in any places that are not supposed to be there. In short, he said that Parker's heart looks great, even by normal baby standards. (He gave us a fascinating quick tour of the cardiopulmonary system, which I will explain to all you nerds out there who care. Scroll to the bottom, after the video if you want the nitty gritty. :-)

Hurdle #3-- See ya!!

While I was laying on the table, watching him perform the fetal echo (which is just basically a really long ultrasound), I was completely overcome by what a miracle Parker is, and all babies are. I watched his little heart pounding away, with the blood flow highlighted and looking like a fireworks display. I heard the cadence of his heartbeat. I saw all four chambers working in perfect harmony at such a fast pace. It was one of those moments where, whatever you are doing, you are completely and 100% hit in the face with the glory of God's creation. I've had similar moments-- standing in the middle of Ireland, holding my first little boy, so on and so forth. Today, though, just as I felt it, Dr. V actually said, "It's amazing, isn't it, that any babies are born healthy? They really are a miracle."

Indeed.

Since he was the first doctor we've seen since the diagnosis, he did a great job of answering our initial questions and telling us what to expect in the coming months. He confirmed that the hernia is "significant." That means there has been some migration of his stomach and intestines into the chest cavity. The fewer the organs that move, the better we'll be. However, there's no real way to predict now what his organs will do in 20 weeks. CDH is primarily a pulmonary issue-- no matter how great every other part of the baby is, if the lungs can't catch up quickly after repair surgery, it can get real serious real quick. We, thanks to Dr. Google, knew all that going in today. The national average for survivability of CDH babies is only 50%.

However.
HOWEVER.

Parker has crossed off two gigantic concerns that can present themselves in CDH cases-- chromosomal defects and heart defects. The heart situation may change, and I have to go back in 10 weeks to be sure it hasn't, but Dr. V feels great about it so far. With every hurdle we've crossed so far, Parker's chances are going up and up and up. Dr. V used the phrase that is of the most comfort to any parent- "If this was my child, I would be happy with today's outcomes." he reassured us that delivering at Northside is the absolute right decision and we don't need to temporarily relocate to California or North Carolina. For this point in a CDH pregnancy, we are in the best possible shape.

On the way home, I of course got Parker a celebratory donut for good behavior. As I left the drive-thru, "How He Loves Us" by Dave Crowder Band came on. I sat at that red light, raising my hands (and consequently my Krispy Kreme) towards heaven and sang, loudly and horribly I'm sure, praises to the God who formed that tiny little heart I watched beating so beautifully today. Sure, there are afflictions... but they are most definitely eclipsed by His glory if you allow yourself to see it.




Still here for the cardio lesson? Strap on in! Please, Lord, let me remember this correctly.


Above is the sketch of Parker's heart. Well, anybody's heart. Oxygenated blood flows from lungs through left atrium and left ventricle . It leaves through some valves and goes through the aorta to the organs, where all the oxygen is used up. Blue blood goes back into the heart-- right atrium, right ventricle, then back to the lungs via the pulmonary artery to repeat the whole procedure. There aren't supposed to be any holes in the walls of the heart, except for when you are a baby. The flap between right and left ventricle, called the PFO (short for something I am not going to attempt here) closes between 6 and 12 months of life. The other joint, below the heart, called the PDA, closes between 72 hours and 2 weeks after birth. Parker has no holes in the wrong spots and the right holes in the right spots. Completely amazing.

Hurdle #2

I got a call today from the perinatologist that the rest of my amnio results were in.

They are NORMAL. No chromosomal anomalies or neural tube defects detected. HALLELUJAH to that, I say. Also confirmed is that he is a boy, as if the tremendous money shot we got last month left any doubt!

To be 100% honest, I had completely forgotten that there were more tests to be run. We got so swept away in the good news of initial "normalness" followed by a very Merry Christmas followed by a Happy Happy New Year's.

Christmas was perfect-- riding high on the news that Parker isn't dealing with big scary life-threatening genetic disorders. Mike had to work both Christmas Eve and Christmas Day, which is stinky, but we have so much family around here that Jeremiah and I were anything but lonely.
Christmas Eve I got the surprise of my life-- my aunt Denise and uncle Greg, with their two girls, asked if they could take Jeremiah to Disney World for the week to give Mike and I some time alone.
Um... YES!
Jeremiah hitched a ride to Florida with my sister and her family, who were on the way down anyway. He was passed off to Nesie and Greg and proceeded to have the time of his life. It was so nice to have 3 Date Nights in a row with my husband-- we slept late every morning, went out to eat every night, and played ridiculous video games.

We also talked a lot about Parker. We had a blessed reprieve from doctors and tests during Christmas week, but today's phone call signaled the start of what I imagine is going to be 4 months of near constant appointments. And battles with the insurance company. And more and more hurdles for us and sweet baby Parker.

My biggest fear in the coming weeks is the inevitable "some people choose to terminate their pregnancies before 23 weeks" spiel (I am currently 20). I know doctors are honor bound to present all options, but that's just not an option for us. We have seen his sweet little hands and feet. We have his portrait on our fridge. His tiny little heart is most definitely beating, stronger than they would have thought for a baby with his condition. I feel him moving ALL THE TIME. I know when he is awake, I know when he is asleep, and I know when he wants a Krispy Kreme (maybe that's every day. And that's okay!) There is absolutely no way we are going to do anything other than trust God's plan for Parker's life and its timing. My nightmare is walking into any of our new doctors' offices and getting the feeling they've already given up the fight.

That's a big hypothetical worry, which, if indulged, can be a slippery slope. I will go completely bonkers between now and May if I let that start happening. So I won't.

Instead, we will sing praises that we are now over Hurdle #2.