Friday, February 24, 2012

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


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.


  1. Go Parker with your 2.12!!! That's amazing!!! Praying for you all :)

  2. I have learned about your family through a fried of mine on facebook. I hope you don't mind. I am so amazed by you and wait for updates to see how you are all doing. You have such strength and I am praying for you all.

  3. I'm with you....visiting the NNICU is scary, but it is certainly good to see what may/could be ahead. We pray for you all every day. Praying for continued good visits to your doc!

    Rose (baby Jude's mommy)

  4. Hello there! I am also expecting a CDH baby. She also has a heart defect (tetralogy of fallot) and a genetic disorder, Mosaic Trisomy 16, but the genetic disorder is not fatal, thank God! I will be following you! God bless you as you continue your journey!

  5. Hi! My son, Connor, is a CDH survivor. He will be 8 on May 27th and is doing great! I'd love to chat when you have time, if you want. I'm on facebook or you can email me: I will be following your posts and look forward to hearing more wonderful news about Parker!

  6. Hi! I am another CDH Mama to a survivor. My little one is 3! I love the way you write - clear, warm, direct and expressive. I can't tell you how much CDH survivor blogs helped me when Dakota was diagnosed, and I believe yours will help others some day. My Dakota had a 2.4 LHR and I know they tell you that numbers aren't everything, but when they are good, they feel great!!!!! Dakota was actually born more than 7 weeks early with an infection. This would be a problem for a normal baby, let along a CDH baby, so imagine how much more undeveloped her lungs even were. She did have to go on ECMO until the antibiotics kicked in (only for 3 days), but then she had a really good recovery and we were in the hospital for 60 days exactly, the whole last 30 was in NICU II (our step down NICU) learning how to feed her and getting her to eat enough to get out of there. Anyways, I just wanted to tell you that while I have seen many babies with LHRs as low as .6 or even .5 survive (including our neighbor in the NICU who is perfectly healthy today), I think a high number just allows you to breath a small sign of relief. I will pray for you and your Parker and that he has a good recovery. I live 4 hours south of Disney and Dakota was treated 1 hour north of Disney World at Gainesville\Shands by Dr. Kays. Now we go to a check up there once a year and we started the tradition of last year going to Disney after the check up. I'm impressed though, I definitely don't run while I'm there. Many prayers that soon you will be planning Disney trips with both of your boys!
    Mom to Dakota 12-25-2008
    RCDH survivor

  7. Hi there! I popped over to your site from Jude's. Coincidentally, I am a nurse in the NICU at Egleston and am so glad that you have had a chance to tour the unit and meet Eileen! She is absolutely wonderful as are all of the staff! I know it is scary, but your sweet boy will be in the best hands and your family will be welcomed with open and loving arms! I know you have Eileen's contact information, but please don't hesitate if you'd like another contact! My e-mail address is I will continue to stay updated through your blog and look forward to meeting you in May!