LHR and NICU and other abbreviations

Today we went back to the perinatologist. My next visit (30 weeks) will start my twice weekly visits. I am thinking of purchasing real estate in the lobby.

The doctor did some quick measurements (fluid looks good and no fetal hydrops) and informed us that Parker has FINALLY turned into the head-down position. He has been breech for 27 weeks. I was all sorts of uncomfortable yesterday and felt like my belly was going to bust. It's likely that what I was feeling was him turning. It doesn't much matter, as he will be a c-section baby, but I should be more comfortable. Hooray!

Finally, they measured the lungs. As with any other prenatal assessment of a CDH baby, lung measurement on an ultrasound has to be taken with a grain of salt. Still, something called the "lung to head ratio" (LHR) is used as a predictor of the baby's survival rate. It's not foolproof, but at this stage of the game, any sort of concrete numbers we can get our hands on, we will take!

LHR is calculated by measuring the circumference of the head and the area of the right lung. You divide the lung area by the head measurement, and VOILA- you have a ratio. Example:
Lung area is 21 x 10 mm = 210 mm
Head circumference is 200 mm.
210/200= 1.05

What does that mean, exactly? Less than 1 is considered "grim." 1-1.4 is "borderline" and higher than 1.4 is "favorable."

Right now, Parker is rocking a

2.12!!!!!!!!!

We were THRILLED. As I said, it is not a guarantee he will survive. This ratio doesn't take the left lung into consideration at all, and it gives no indicator of lung performance postnatally. Still, as I said, we are so tired of the "we'll have to wait and see" speech that any sort of concrete information is a godsend. Hooray Parker!!!!!

March 9th will be a busy day-- back to the perinatologist in the morning and a follow up with the cardiologist in the afternoon. Parker's heart has not yet presented any concern, and we pray that news stays the same.

We left the Northside area and drove down to Egleston for our NICU tour. We met with Eileen, who just could not have been any sweeter. She spent about an hour with us, answering every ridiculous question we came up with. She put Parker's name on the "arrivals" board for May. She introduced us to every person who came by, and told them that we would be there soon. Everyone was WONDERFUL.

I'll have to get into the "feelings" aspect of it tomorrow, but here is the "informational" side of it all (and there was so. much. stuff. Heavens.)

Once Parker arrives, he will be put in NICU A. The nurse/patient ratio here is usually 1 on 1. There are three available ECMO bays (go read my CDH FAQ page if you haven't already!), and if you are on ECMO, you get two nurses to yourself 24/7- one for the baby and one for the machine. They had a CDH baby there today-- she was born Tuesday night and placed on ECMO Wednesday morning. Seeing a baby on ECMO is rough, I'm not going to lie. There are many large tubes full of blood running all over the place. There are holes in the baby's skin that allow those tubes to go all the way to the heart. Nearby, there is a machine parked on which that baby's whole life rests.
Scary? Of course.
I've read enough about it and seen so many pictures of other ECMO babies that I had some idea of what to expect. Mike, not so much. Regardless- we both stood by that sweet baby's bedside paralyzed in fear that we would accidentally knock into something and turn the world over.
Eileen reminded us that Parker might not need ECMO at all, but if he does, we at least have an idea as to what that will look like.

He will leave NICU A once he has had his repair surgery and is off the ventilator. From there, he will go to the "swing beds" in NICU B. These are actual cribs with so many less wires and beeps and tubes. The ratio here is one nurse to every two babies. These are still very sick babies, but they are not as reliant on machines of various types. Here, you learn how to eat and how to not be hooked on heavy drugs. It's like a little baby rehab facility! We spent some time with a tiny tiny little 6 week old girl who was learning to eat and suck her binky. She was a FIGHTER all wrapped up in her pink swaddle papoose.

From NICU B, you graduate to your own private suite. Here, each baby has his own room (some start off in semi-private) with a bathroom, TV, dresser, and pullout beds. The ratio here is one to three, and this is the stage they say parental presence is critical. These babies have been here for a while, they're old enough to need/want lots of stimulation, and definitely know their mommies and daddies. There are all sorts of swings and bouncies and what not to play with, and a matted play area for physical therapy. The most important thing you get on this wing is The Magic Green Ticket-- a checklist of items you must master before being released from the hospital. Once the Magic Ticket appears on your door, you are on the way to the promised land!

That seems like a WORLD away. I am having a hard time wrapping my head around so much of it, and I'll have to do another post entirely on being a future NICU mom. The most important thing was that today, we left the hospital with a good idea as to what our life will look like for Parker's first months. We got all the logistics out of the way (like parent parking and breast milk storage) so that when the time comes, we are able to focus on Parker.

More importantly, we left with Eileen's cell phone number and her begging us to call her if we have questions or wind up in the scary place. We left with names and faces of people who will care for Parker day in and day out. I left with a mental image of where he will be while I am trapped at Northside recovering from my c-section. Mike left with an idea as to what he will be dealing with those first few days that he will be flying solo. We left feeling overwhelmed, but comforted and confident.

We came home, grabbed Jeremiah, and took off to the Krispy Kreme for a celebratory donut. A busy day, to be sure, but one full of blessings.

Plans

I got thrown into a tailspin of grouchiness this week, all due to the most innocent of emails.

I come from a long line of Disney fans. As of October, as best I can calculate, I was on trip #15 to Disney World. (It made trip #5 for Mike, #3 for Jeremiah, and technically #1 for Parker) We have recently joined the RunDisney movement-- using fun races as an excuse to plan a family vacay. I've done three half marathons (one with a Parker in my belly) and a 5k down there, and I absolutely love it. This week, I got a heads up that registration was opening for the First Annual Twilight Zone Tower of Terror Ten Miler in September. "WE ARE SO THERE!" I thought to myself.

Except not.

At first blush, it seemed perfectly reasonable-- I'll be 4 months postpartum and that's plenty of time to get myself whipped back into shape. Parker will be 4 months old, so he could either come with us or we could have a grown up weekend and leave him and JB with the grandparents. That mindset lasted all of .25 seconds.

Yes, 4 months will have passed since Parker's birth. There is every likelihood that we could still be chilling in the NICU 4 months later. Even if we are at home, we might be dealing with oxygen tanks and/or feeding tubes, not to mention the weakened immune system. In short, I have NO IDEA what my life will look like in September. And it makes me grouchy.

I am a planner. I like to have things laid out well in advance, and I like to know what might pop up so I can have contingency plans. If nothing else, the last few months have been a tremendous lesson in leaving my own plans for my life and giving up control to God and trusting His plans and timing for our family.

For some reason, this week resulted in me throwing a pity party for myself. I can't plan ANYTHING past mid-May. I don't know when our next vacation will be. Wah wah wah. Temper tantrum and resulting shame at childish behavior.

It's carried over into my preparations for Parker's arrival. Thankfully, I kept Jeremiah's nursery as it was, I just shut the door and had it lie in wait for Baby #2. I have everything I need to bring Parker home, it's just all put away in storage. Still, as much as I love planning, I also love shopping. Under "normal" circumstances, I would have disregarded the 14 SpaceBags of Jeremiah's old clothes and started buying new things for Parker. I would have purchased the new stroller I have convinced myself I MUST have. I would have gladly agreed when my dear friend Catherine offered to host a mini-shower for me in April.

I just can't.

There is a huge part of my brain that knows we might come home without Parker. As of now, all the baby things are hiding behind closed doors and won't be dragged out until we know he's on the way home. What if we never have a reason to drag it out of storage? Will we ever want to try to have another baby after having our world rocked with this one? My original plan was to go ahead and get my tubes tied while having my c-section- 2 kiddos has always been our plan. I can't even do that now... what if I someday need my "tubes" again because Parker doesn't make it?

All of this from a ridiculous email. AN EMAIL FROM MICKEY MOUSE, for the love of pete. I tried to cut myself some slack this week-- I haven't really had as many freak-out moments as I have been expecting, and I have remained optimistic and upbeat the greater majority of the time. I know that these down days are going to come, and I know that to ignore them would be ridiculous. Still, I am not a wallower. I never have been. I believe you make a choice when your feet hit the floor every morning- I am going to get bogged down in my problems, or I am not. It might not always work out the way you plan throughout the day, but I have always found that if you let your problems get a head start on you, they quickly multiply and swallow you up and you wind up in a place you don't even recognize with a self that you don't like very much.

**I should add here that I am not one of those "Make lemonade!!" people. Those people annoy me. I find myself suspicious of the constantly jolly. There's a quote on Pinterest that sums up my view:

I am done whining. I have picked myself back up and moved on. I've done a lot of praying this week, and I have repeated Proverbs 3:5 ad nauseam.


I haven't let go of my dream of one day standing on Main Street with my completed family of four, I have just acknowledged that it might not be happening as quickly as I would like it to. I have also turned it into Phase Two of Bribery for Parker. Once he is born, he will be cut off from his donut addiction. He will need a new motivation to behave properly and get stronger, and so this is it. Some people promise ponies. We are promising the most magical place on Earth.

Hear that, munchkin? Once you are well, WE'RE GOING TO DISNEY WORLD! So hurry up. :-)

What's On My Mind

According to Wordle (so fun!) and this blog:

Of Livers and Lungs

Firstly, I need to thank you all for your outpouring of love and support after yesterday's post. It's funny- Mike and I didn't feel like anything new came to light yesterday, but I guess (similar to how we felt when the surgeon outlined it all in black and white) all of you were somewhat taken aback to see the realities of Parker's condition. As scary as yesterday's post was, the most important idea that I take from it is to celebrate Parker's victories, no matter how small.

Today was a HUGE victory, in comparison to what we've heard so far. Of course, it all came with the caveat of "all of this could change at any given time," but we felt great after our perinatologist visit today.

Parker at 25 weeks, giving himself a thumbs up. Or, alternatively, attempting to suck his thumb. Booger.

During today's ultrasound (#16. Bajeezus.), they were able to ascertain four VERY important things:

1. I am not presently carting around any extra amniotic fluid (polyhydramnios). CDH babies are notorious for not being able to process the amniotic fluid they are producing, causing it to build up. If it gets too bad, it can cause early labor. I admit I worry about this, as my belly is HUGE. Seriously, huge. **it might be the donuts... just a thought** Thus far, however, not a concern. Yahoo!

2. We are not dealing with fetal hydrops. Just as I am not carting around extra fluid, neither is Parker. Fetal hydrops occurs when fluid accumulates at various parts of a baby's body. Essentially, it's caused by the heart starting to fail. They check for fetal hydrops every time they look at Parker, and given his lack of heart issues (his four-chamber view was complimented AGAIN today), this hasn't presented as a concern. This is good, because Parker's heart, after birth, will have to go into overdrive to get the lungs back up to speed. The better we're looking before that, the better we should be looking when it's time.

3. For now, his liver position is down. This is one of the biggest prenatal prognosis tools-- even though it comes with the now-standard "we won't know until he's born" caveat. Statistically, babies whose livers have NOT herniated into the chest cavity have a better prognosis. The liver is harder than the stomach, spleen, or intestines, and it can severely impede lung development and heart function. Furthermore, presence of liver in the chest cavity of a left-sided CDH baby (like Parker) usually points to a larger hernia that will be tougher to repair.
That liver needs to STAY DOWN. As he starts to hit his huge growth spurts in the next few weeks, it will be closely monitored. For now, it seems that his stomach and a tiny bit of intestine are all that have herniated. This is somewhat of a blessing in disguise, as the stomach has essentially formed a plug in the hole and seems to be preventing the migration of more organs into the chest cavity. The doctor today described the stomach as a water balloon, being able to fluctuate and fluidly move in and out of the hernia to various degrees. We'd very much like that water balloon stomach to stay where it is, keeping all other players at the digestive party in their homes.

4. He has, at a glance, good lung development. CDH babies' lung growth is compromised by the digestive organs taking up valuable chest cavity space. Parker's right lung seems to be growing great, and his left lung (where the problems would be anticipated) looked pretty darn good today. It's obviously smaller than the right side, but the fact that it's there at all was HUGELY comforting. At my 30 week appointment, they will be doing an in-depth study of his lungs.

Those four things combined, along with watching the most adorable fit of hiccups on the monitor, made for a highly successful visit. He weighs a whopping pound and a half, and he entertained us all with his version of the electric slide. In short, it was most definitely a donut day... but I really wanted a cheeseburger. So I reasoned with Parker-- a cheeseburger is almost as good as a donut!

Y'all- he wasn't having any of it. I plowed that cheeseburger, and within an hour was sick. I dealt with horrible nausea for the first 22 weeks, and I FINALLY came out on the other side. Wouldn't you know it, that little booger taught me a lesson today-- if you promise donuts, you better deliver donuts.

Apologies, your highness.

In other news, I have to share this picture (cell phone picture=not very good) of Jeremiah. We had the audacity to explain to him that the Junior Jazzercise class, at which we had dropped my niece Rosie today, was for girls. He. Was. Devastated. Especially when we learned that they would be dancing to music from the Fresh Beat Band and wearing cowboy hats.

Behold, the face of the man who might one day infiltrate the female domain of aerobic dance:


LOVE LOVE LOVE my boys. Both of them.

Keepin' It Real, Banana

**You know you're the mom of a 3 year old when the title for your blog post comes from The Fresh Beat Band. They are Jeremiah's favorite people, and the reason I can cook dinner every day. They are four musically inclined teenagers who frolic about and sing ridiculous songs, and I always find myself wondering if they are THAT happy. They're cute and all, but in the middle of Jeremiah's favorite song, one girl has to shout "KEEPING IT REAL, BANANA!" My heart aches for her at that moment. Perhaps her dreams are fulfilled. You can decide by clicking HERE to watch the video, right about the 1:27 mark. You can thank me later when you are singing it in your bed as sleep eludes you.**

We met with Dr. Parker today. He is a pediatric surgeon, and he will handle Parker's repair surgery after he is born. The first few moments of our meeting, once he found out that Parker is a family name, consisted of the So-Southern "Where are your people from?" discussion. I am of the Panthersville Parkers, and he is of the Valdosta Parkers. He was thrilled with our name choice.

He was very nice and very informed. He was also VERY straightforward. We left the appointment without any new information about Parker, but he firmed up alot of details about what will happen when Parker is born. It wasn't all that pretty, to be honest, but it was somehow nice to have someone outline the possible scenarios-- positive and negative. Things got very real very quickly for us, hence the title of this post. It was going to be called "Keepin' It Real", but my brain cannot help but add the rest. Curse you, Nick Jr!

Our appointment didn't involve any exams of me or Parker. We sat in a consultation room and went through Parker's chart, then outlined procedures for his birth, then were given instructions for our NICU tour. That was pretty much it. He threw MUCH information at us, used all sorts of real big words, but did so in a way that was relatable and understandable for us. He let us ask any questions we could think of. We didn't get any new information that was specific to Parker, but I feel like he firmed up some details about treatment of all CDH babies that will inevitably be part of Parker's care.

To list every thing in one blog entry would be impossible, so I am working on a new tab up at the top, right under our picture, called "CDH FAQ." Click there to get the nitty-gritty details of what CDH is, what it means to babies, and how it can be treated. Anything on the following list is explained in depth over there.

In the meantime, here is a very abbreviated rundown of Parker's first days:

1. Born via c-section at Northside
2. Immediately sedated and intubated, likely before he is able to draw his first breath on his own
3. Stabilized by NICU team, maybe maybe maybe shown to Mom and Dad if tolerant of ventilator
4. Transferred to Egleston so that he is close to an ECMO machine, should it be needed
5. Depending on blood gases and lung function, he will await his repair surgery. The surgery will not be performed until he has overcome pulmonary hypotension, should it present itself.
5a. If his pulmonary hypotension does not resolve itself, he will be put on ECMO to help his heart and lungs stabilize and prepare for surgery.
6. 4-5 days in, provided he's cooperating, repair surgery of the hernia itself will be done. Strangely, this is really the "easiest" part of the whole thing. Ideally, it will be done laproscopically. If the hernia is large, a Gore-Tex patch will be placed over it. A patch will put him at higher risk for re-herniation in a few years, but at that stage repair surgery is pretty low key.
7. Post-op, it's a waiting game to see how his lungs start to function now that they are given some wiggle room. Depending on his ability to breathe, his ventilation and medications will start to be weaned.
8. Once he is off of ventilation, he has to prove that he can tolerate feeding before being released from the hospital. CDH babies often have digestive issues, such as reflux, from the esophagus, stomach, and intestines being manipulated during development and surgery.
9. After he proves he can breathe and eat on his own, we get to leave. There is a possibility of being sent home on oxygen, and/or with a feeding tube.

All in all, we should expect a NICU stay of minimum 6 weeks, average 8 weeks.
There might come a time during our NICU stay that serious discussions are held about removing life-support measures. While these devices help the baby heal, they also can (if used for too long) do more harm than good.

So...*deep breath* There you have it. That's what we are up against. There are many many unknowns that won't cross over to knowns until he's here. At any given point, things can go from rainbows and butterflies to scary horrible decisions.

He might die. That's just a fact of life. In fact, there is a fairly large chance that he's going to-- larger than any parents ever want to hear. Still, we've come to terms with that. We've really come to terms with the whole thing... we don't have a choice.

So, we go into it knowing as much as we can. Thankfully, we have doctors who are straight shooters. I'm not a person who wants you to blow sunshine and throw flowers at me to make me happy. I'm a person who wants to know what might be coming so I don't get blindsided. I think, if anything, it will help me to celebrate Parker's victories, no matter how small, when they come.

Until then, we pray. We know that others are praying for us. We pray for peace, we pray for faith, and we pray for God's will to be done even if it's not what we hope for. I've been thinking alot about prayers recently, which is a whole other post.

This post feels like such a downer, but it's real. If you find yourself feeling anxious or sad about it all, go back up top and listen to the Bananas song. :-)

For today, Parker and I had some donuts-- he didn't have much of a job today, but as the only rule is no BAD appointments, he squeaked by. We go back to the perinatologist tomorrow, which will hopefully give us some more information specific to how Parker is developing right now. I'll update with any news tomorrow!

Donut Detention... or not?

**I have no dignity and no shame left. My first pregnancy robbed me of that. Therefore, this entry contains descriptions of hospital goings-on. Proceed with caution.**

Thursday, I wound up in the Labor and Delivery ward at Northside. I have been having relatively fierce contractions for weeks, which I have been assured are normal. However, I woke up Thursday to some very light spotting. I called the doctor, who immediately sent me to the hospital.
(I have to give a shout out here to my OB office's staff. I called right at the beginning of lunch hour, and sweet Nurse Maggie literally chased Dr. Sermons through the parking lot to ask him what he wanted to do before he went to Wendy's. She came back all out of breath. I love them.)

It's funny, I was not at all panicked until I was told to go to the hospital. I imagined being told it was yet another joy of pregnancy, to go home and rest, and call if it got worse. Checking into the L&D unit at 23 weeks is unsettling. Poor Mike, who was off that day, went into Quiet-I'm-Not-Talking-But-I'll-Rub-Your-Hand mode. I fell apart sobbing, called my sister for emergency childcare for Jeremiah, and started alternately praying and bribing Parker with trips to Disney World.

My sister and dad met us at the hospital to get Jeremiah, and I acted ugly to them. I could blame it on fear, but that's not a real excuse to shout at your family members when they are trying to help you. Must. Work. On. Stress. Management.

I stood in line to check in behind a poor woman who had the classic soaked-jeans-screaming-obscenities demeanor of a woman who is very ready to have a baby. She raised all sorts of a ruckus. What amuses me most about Northside is that the L&D check-in shares a lobby with the waiting room for the families. In fact, the check-in desk is in the middle of a huge 5 story atrium, so her shouting was bouncing off the walls and magnifying by the second. I suppose this is not out of the ordinary there, but I spent my waiting time watching the horrified faces of the family members in the waiting area. The Yodeler was quickly whisked away by a large man with a wheelchair.

I checked in, explained the situation, and was put in the LH wing. I have no idea what LH stands for, but I have decided upon "Labor Holding." To translate, they are tiny tiny little rooms with a tiny tiny ensuite mauve-tiled toilet. I ended up there when I fell during my pregnancy when Jeremiah, and there we were again. The large improvement this go round was the squeaky vinyl recliner shoved in a corner for Mike. His legs hung off the end by approximately 18 inches.

I was hooked up to a fetal monitor and a uterus monitor. I am pretty sure there are technical terms for that, but I don't know them. Parker's heartbeat was fine, and my contractions went along quite merrily. I was somewhat pleased by this, as it proved that I was not hallucinating them. They did a urinalysis, checked my cervix, and did a fetal fibronectin test. Side note-- God bless labor and delivery nurses. I know they have chosen that path for their lives, but for the love of pete. You get to know each other VERY VERY WELL in such a short period of time.

Dr. Eller, our perinatologist, came in and did an ultrasound. He's an odd duck-- you may remember him and his Christmas tie from the Bad News Day (Thursday's tie was pink)-- but very nice, and he complimented the length of my cervix. Um... thanks?

He said that Parker looked great, there was no internal bleeding, and that in all likelihood I was dealing with aggravated uterus and cervix from some sort of infection setting in. He gave me an antibiotic to take as a pre-emptive strike. Then he told me to wait for the fibronectin to come back. His words: "If it comes back negative, you're fine. You're not going into labor anytime soon. If it comes back positive, it doesn't really mean anything because I see no other symptoms."

Thankfully, it came back negative. They told me I could go home, unless I wanted to wait for Dr. Sermons to make his rounds. Um, no. I knew he would call me to check on me, and sure enough he did Friday morning. I apologized profusely for what apparently amounted to nothing, and he reassured me profusely that it was right of me to be worried and to go get checked. I asked him what he thought the problem was. He said that without any real results on any of the tests, it could be anything. Just a simple matter of something triggering an inflammation. This, of course, was not good enough for me and I set about thinking of what variables have been presented in the last few weeks. So I asked him...

Y'all-- I was nearly sent into labor by STORE BRAND TOILET PAPER.

I just don't really know what to say about that, except that it just figures. Just when I thought we'd seen it all with this pregnancy, there you have it.

I feel terrible... I was temporarily convinced that Parker was causing all the drama, and I put him in donut detention. I suppose now I will have to apologize, and reinstate his pastry privileges. I'm holding out until Thursday, however. We have our initial meeting with the pediatric surgeon (whose name is Dr. Parker! I was tickled to death to hear that!) Thursday, and a perinatologist visit Friday. As always, Parker must behave nicely during those appointments, at which point I happily will stop at the Krispy Kreme on the way home.

I also will be stocking up on Kleenex Cottonelle.