Nettie and Obamacare

This is a reposting of something I wrote for facebook and email. I felt awkward writing it, but these issues had been nagging at me for some time. 

Our daughter, Nettie Maude, just had heart surgery on Oct. 16th at 5 days old. Obamacare means that she will be guaranteed health coverage for life.

First, thanks for reading this. I'm reluctant to politicize the harrowing experience my family has just been through. Nevertheless, the importance of this up-coming election was recently brought home to us in a rather real way. So before you decided whether or not to vote, or who to vote for, I hope you'll consider our story.

Early on in my wife's pregnancy we learned that our first daughter would need open heart surgery within days after birth. Fortunately we both have good health insurance. The surgery went well, and the prospects are bright for our daughter to live a normal life, just one with frequent visits to the cardiologist. Neither of us had health insurance throughout most of our twenties, and if our daughter had been born then, we don't know what we would have done. More importantly, without Obamacare and its requirement that insurance companies no longer discriminate against pre-existing conditions, as well as the elimination of annual and lifetime coverage caps, our daughter would not be able to have the same opportunities or to live life as her parents have. Her career and life choices would be severely limited by her need to maintain continuous health coverage. Even with insurance, she could easily max out any annual or lifetime cap if she ever needed another surgery, a distinct possibility with her condition.

In the debates Romney claimed he would maintain the Obamacare provision that bans discrimination for pre-existing conditions, but his very own staff had to correct this position (see http://n.pr/QBFq3H and http://factcheck.org/2012/10/whats-romneys-plan-for-preexisting-conditions/). Romney is constantly talking about how entrepreneurs and "job creators" will save the economy. But how is anyone who isn't from an extremely wealthy family going to start their own business, especially if they have a pre-existing condition? Forget starting your own business, for my first four years out of college, I worked in the television industry, where nearly everyone is freelance. That means if you want insurance you have to buy it on your own. I was young healthy and broke so I didn't. My daughter won't have that option if Romney is elected and repeals Obamacare, nor will she have the option to work in any of the expanding fields that operate on an increasingly freelance hiring-model. She'll always need to have insurance. Without Obamacare, if she were to try to buy her own insurance as an adult, she would be denied due to the heart condition she was born with. Also, without Obamacare, if she were to take an entry level job with poor insurance that had a coverage cap and during that time need another surgery, she could be financially ruined for the rest of her life. 

Regardless of what Romney says he will or won't do about Obamacare, the important point is that all people deserve the right to health care. This is pointedly true for those, like our daughter Nettie, who are born with pre-existing conditions to no fault of their own. No one, especially those in the wealthiest nation in the world, should be forced to make decisions on how to best live their lives and serve society based on the fear of losing health insurance. President Obama has taken America one step forward on this issue, and lent a potentially lifesaving hand to my daughter, against the most venomous of opposition (for a list of what Obamacare provides, see http://www.motherjones.com/mojo/2012/06/obamacare-supreme-court-regular-americans). When you go to the polls next Tuesday, please think of our daughter Nettie Maude when you consider who to vote for. Thank you for listening to our story, and please forward this to anyone you think might appreciate it.

Sincerely,

-Louis Thomas

Home!

So we finally made it. We were discharged from the hospital and the cab dropped us home around 2:30pm today. Julie had spent the past four or five nights at the hospital, and I joined her for last two (a.k.a. Lou really needs a shower). We're so grateful to finally be at our own  place, out of the hospital, and have Nettie without any wires attached. Despite the caring nurses and better than expected food, Julie still began to feel as if she was in a women's prison.

The women's prison was not without its charms, however. Our first roommate's parent was an extremely friendly fellow-first-time-mom, originally from Puerto Rico, but now New Hampshire via New Orleans. Her kid was four months, so she gave us lots of good new parent tips, plus left us some snacks and a $5 cafeteria food voucher from her social worker when she left on Sunday. The recovering catholic in me felt guilty taking the voucher, but my wife has been teaching me not to look a gift horse in the mouth. Our next roommates were a sweet young family from Venezuela via Panama, and the grandma sang her five-month old recovering granddaughter the most beautiful songs. The nurses all said they loved working with Nettie since her problems were "normal" for a kid recovering from complex heart surgery.

There was a subtle battle between the lactation consultant and the floor nursing staff, mainly because the staff had to quantitatively document Nettie's food intake, which is tricky to do with a boob. Rather than weigh the boob before and after, the compromise was weigh Nettie before and after, which you can imagine was rather inaccurate and cumbersome. Anyway, after not being able to nurse for almost the first two weeks of her life, it took maybe two days for Nettie to figure it out. She has since decided to make up for lost time. It has been reminiscent of the two young girls' decadent gorging after an adolescence of mid-century communist austerity portrayed in Věra Chytilová’s Daisies (http://www.criterion.com/films/27854-daisies). In other words, the girl knows how to eat, and poor mom is hard pressed for a break.

But now we're home, one happy united family with our confused dog Belafonte. If you're in the neighborhood, stop on by, we're now open for visitors. Thank you all for all the support during these most trying past few weeks, and please keep Nettie in your thoughts and prayers as we go for the many follow up visits to keep watch and make sure her recovery continues to go smoothly.

TUBELESS!

Nettie texted her stylist
"need hair btwn late-90s
emo-hardcore and boyband"

Nettie had her nasal feeding tube and PICC line removed today, so she's got nothing more internally attached to her! Mom is nursing her, and while it's not easy trying to catch up on two plus weeks of learning, Nettie is doing alright. Julie is staying at the hospital over night in a faux-recliner/bed thing so she can feed her; not the most comfortable lodgings but it'll do. Nettie has a eco-cardiogram(fancy heart xray) Monday, and if that looks good, she may be able to come home on Tuesday.

The other big event today was that Nettie got to experience aire libre for the first time. It was warm outside, and the hospital has a great courtyard garden, so we took her there and walked around. Granted, she fell asleep after about five minutes, but I think she really liked it.

Movin' on up to the East Side!

Today Nettie had her last big chest tube and pacer(maker) wires removed, and was moved out of 8 South, the cardiac ICU, to 8 East, general recovery. As if that wasn't momentous enough, we got to bottle feed her (she on half bottle/half tube) and hold her again. She lost about a pound in the ICU, which isn't bad. Now that she's not so bloated she looks so dang skinny. They're also weening her off the oxygen tube that sits under her nose. Some kids stay on the floor for 3 weeks, but if she continues to do well, she could be home in around one. Cross your fingers! If things continue to go well over night, Julie can attempt to nurse her tomorrow, and I don't know who'll be more excited by that, Julie or Nettie.

Above is a picture of Nettie's new room. Behind Julie is one of the hospital chairs that folds out to a single bed. One of us my try to sleep there tomorrow, we'll see. Now that she's on the general floor, the nurses have to care for more babies, so she'll get less individual attention unless we're there. The other picture is of Nettie doing her best Godfather era Marlon Brando flanked by two fauvist stuffed animals.

Ms. Eubie Blake?

Look at those long skinny fingers! While I want to make sure my little girl grows up to be whoever and whatever she wants, even if it means dad has to drag his curmudgeonly bohemian asthmatic tuchus to field hockey practice and pretend to be excited about it, I'll bet she'll take after her grandmother and play the piano. Nettie may be the first Thomas to have been born outside of Charm City in generations, but Baltimore is still in her blood, and just maybe whatever's in the water that endowed Eubie Blake with those elongated ragtime digits found its way to Ms. Maude.

Mr. Eubie Blake
and his long Baltimore fingers

Today Nettie got another chest tube/drain taken out, which is progress. She still has tons of gunk in her throat and lungs, and as she's becoming more awake and cognizant, I think she's getting a bit more annoyed. The doctors and nurses told us today she had the loudest lungs (a.k.a. cry) in whole ICU. It's a really good sign she can cry loud in regards to her health, and it's great she's got some fight in her, but here's to hoping she's not as stubborn as either of her parents. They had to put her on some more oxygen this evening, but they were hoping to ween her back throughout the night. Tomorrow they're gonna' try again to bottle feed her Julie's milk. Once she bottle feeds, they should be able to move her out of the ICU and into a general recovery room, hopefully by Wednesday.

Overall, the doctors and nurses are still really happy with her progress, her swelling has gone down significantly (hence the fingers), and mom and dad are getting antsy to bring her home (though it may be a week or so).

"A Quick Update", or "Revenge of the Plastic Mustache"

"you talking to me?"

Hi everyone, it's Julie. Lou is busy reading as he's easing back into school and is hoping to attend classes this week. We wanted to let everyone know that Nettie is doing well. Her swelling has gone down significantly; she no longer looks like the Michelin Baby. She's gotten a good number of tubes taken out, the biggest of which was probably the ventilator tube that went down her throat. Hence the return of the plastic mustache. She's been able to audibly cry since they took the ventilator tube out, which is a good sign. Because of the tube and surgery in general, she has a lot of gunk in her chest. Poor girl, she sounds so congested, like a terrible chest cold, and she doesn't know what to do with it.  She was able to spit one up on her own, another good sign, but Lou and I both wish we could just get in there and hack them up for her. On top of this, it seems like she's got a sore/dry throat, also from the tube.

Another new item is that they're trying to give her a bottle and no longer feed her via a tube in her nose directly to her belly. We were able to feed her some of the bottle today, but she has to learn how to eat, which is difficult because of the sore throat and gunk in her chest. Also, she wasn't hungry since she had been continuously fed via the tube. I really wish I could have fed her before the surgery, *sigh*. I know that she'll come around. They're giving her a lump sum of milk now every 3 hours, as she would normally feed. She should begin to get comfortable with that and begin to feel hungry. According to the nurse babies have to "learn" what hungry feels like and what those feeling mean. Oh, the things we take for granted.

She does have some milky drainage from around one lung, which is normal, and they may not be able to pull that tube out until that clears up. The drainage looks like fat from my breast milk, so tomorrow the breast milk technicians are going to spin the milk to take out the fat. I guess she'll getting 2%. The tube around her other lung drained a lot yesterday but seems to have slowed or stopped now so that tube might come out tomorrow. We're hoping that in the next day or two she'll be able to leave the Cardiac ICU and move to the general recovery area. There it will all about her eating and putting on weight. The nurses said that she would stay there for a week, give or take a few days. We just hope to have our baby girl home soon!

"...like a mad woman"

Julie and I decided to take the morning to try and clean up the house a bit. Of course, we were calling the hospital every few hours to check on Nettie. This morning the nurse on the phone said Nettie was peeing at "replacement" level, meaning that she was peeing out the equivalent of the fluid they were giving her. This was an improvement, but meant that the fluid that had built up after the surgery was still hanging around. I went back to class at 11:30am for the first time since Julie went into labor a week and a half ago. While I was in class, Julie called the hospital again, and this time the nurse said Nettie "was peeing like a mad woman." I never knew anger made the fairer sex urinate, but I'll take it!

We didn't make it to the hospital today until 5:30pm or so, but Nettie looked a little less puffy then the day before. Her eyes were open really big, she would grab our fingers and we would sing her songs. Because of the breathing tube in one nostril and the feeding tube in the other that both go down into her throat, she can't make any noise now (I think her vocal cords are blocked). It was a little sad to see a baby try really hard to cry and not get any sound out (I'm sure many parents are thinking that sounds wonderful), but since she was looking better overall, and the doctors and nurses seem happy with her progress, so are we. She has two tube drains in her chest still that they may try to remove tomorrow, and hopefully by Sunday they will have weaned her off the breathing tube.

So let's everyone keep up the rain dances, poems, vibes, etc., whatever hippy energy you can muster, it seems to be working!

Pee like the Wind!

Nettie Maude needs to pee, and we need everyone who reads this to do a little rain dance to help make the floodgates open. Overall, she's recovering well, and though she's holding a lot of fluid, the nurses and doctors assure us this is within the range of "normal" for kids following heart surgery. But still, they really want her to pee; that's her only job for the night.

This photo is from yesterday, Nettie actually has a few less tubes and wires in her at this point, but we wanted everyone to have a visual that explains why we were too exhausted to post an update yesterday. Today has been a good day, both Julie and I are in good spirits, but yesterday was pretty hard, regardless of doctors' assurances that all was fine. Fortunately, we've been alternating in our freak-outs, so one of us has always been there to comfort the other.

This other photo is of all the equipment in her room. Nettie is hooked up to a breathing machine, though by now she is initiating most of her own breaths (except when they have to give her muscle relaxants to take tubes out, etc). Yesterday she was also hooked up to an external pacemaker, though she's been off of that for most of the day today. Other good news is that they've just now started to feed her the breast milk Julie has been pumping since her birth. The hospitals have been amazing about this, they've saved Julie's nutrient-rich pre-milk (colostrum) and milk, and will feed it to Nettie in the order it was produced so she gets all the good stuff in the sequence mother nature intended.

There were four scary things about yesterday: the geneticist, the pacemaker, the breathing machine, and the insurance. The geneticist - post-surgery Nettie has been holding a lot of fluid, and the doctor's noticed that much of it is in the back of her neck. That can be a sign for some genetic disorders, but usually it is accompanied by other signs that Nettie doesn't have. The doctors said on a scale of 1 to 10, 10 being the most worried, they were somewhere between a 0 and 1. Since there are genetic specialist on staff, however, they called one over. This pushed Julie over the edge a bit. We had been dealing with these issues since the pregnancy was first red-flagged back in the spring. Our doctor in DC performed an CVS; the test determined that Nettie did not have down-syndrome or other major genetic disorders. After the stress of those tests, we declined a "micro-array", a test that looks for minor genetic disorders. Our dr in DC described the CVS as examining the structure of the genetic skyscraper, and the micro-array as looking for missing individual floors (her analogy, not mine). We had to wait until this morning to meet with the genetic specialist here in Boston, and while she did order a micro-array (which takes a few weeks for results), she said she really wasn't worried about Nettie. Her heart condition appears to be an isolated abnormality, which means that if we had other children, they would likely not have a heart condition. That made us both feel better.

In regards to the pacemaker and the breathing machine, they both just overwhelmed me yesterday. Periodically the doctors would take the pacemaker off, and the "electricity" in her heart wasn't sending the right signals. They told me this usually corrected itself, as it has by today, but for some reason it just got to me. Nettie would have been fine even if she did have had to have a pacemaker for the rest of her life (a possibility we knew about before the surgery), but still, dad can be a delicate flower. And I don't know what it was about the breathing machine, perhaps it was baggage from my childhood asthma, but it got to me too. Anyway, no pacemaker now, and they're weaning her off the breathing machine fine.

As far as the insurance, if any of you reading this are even remotely considering voting for Romney, please call me, and let's have a long conversation. WHY DON'T WE HAVE A SINGLE PAYER-SYSTEM! To add insult to injury, Julie and I have had to spend hours trying to decipher the would be greek legalese of our insurance policies to figure out which of our plans will be best for Nettie. We talked with a financial counselor, we've been on the phone with both plans; you think you understand something, then someone tells you the complete opposite. You just want to poke your eyes out. And then you hear some damn Canadian talk about how they just have to walk into a hospital and walk out. Now, I know, we're at the best hospital for childhood cardiac surgery in the world, and it's in the U.S. system, and I'm wrestling with this fact too. But contrary to what Adam Smith would have you believe, I don't think these doctors are doing it for the money. In fact, if you even ask them about insurance, they say, I have no idea about any of that stuff, go ask one of the counselors. Also, one of the cardio-baby stories on Boston's Children's website is from a mother from Iceland, and her government paid for her to fly to Boston and covered all the costs. I'm going off on tangets, apologies. End of the story is I think we finally figured it out, and Nettie should have decent insurance.

taken right before her 1week bday today

To end on a light note, Julie and I have been sleeping at home the past two nights. At home last night Julie ate an ice cream sandwich, which she had been really into during late pregnancy. Afterwards in bed, she said to me "you know, I think it was Nettie that really liked the ice cream sandwiches; that ice cream sandwich just didn't taste as good as they did while I was pregnant." Nettie, once you're home with us, and old enough to eat ice cream sandwiches, you can have as many ice cream sandwiches as you'd like.

Like a surgeon!

The surgeon came and talked to us, he said he was really happy with the surgery, that her heart looked good in the echo (like an xray). We'll get to see her in an hour or so, though she'll look pretty rough. Post-Op the kids can have the "24 slump", where they really need to monitor her blood pressure, heart rate, etc. and adjust meds, machines, etc.

With the surgery results looking good, though, we feel like we're over a huge hurdle; we both felt like the surgeon answered a question we'd been fretting over for 6 months. When the surgeon walked over to us, I put a half eaten apple face down on a waiting room end table I was so anxious to hear how things went. It'll be hard seeing her tonight, and all the doctors and nurses and chaplains recommend we don't stay long, go home and get some rest.

After the surgeon left, and we hugged and cried, Julie and I sat there stunned for a minute. Someone said "maybe we should get a beer?" Maybe that's just what we'll do.

Waiting Room

We just got back to the hospital, and hopefully will be able to talk to the surgeon in an hour or so. The nurse liason gave us an update on Nettie Maude's operation: no surprises, she's off the heart and lung bypass machine, her heart is beating on it's own, and now they're stabilizing her, which is standard and can take a while. It's not over yet, but everything seems to be progressing according to plan.

I always thought I'd tell my kids they weren't allowed to experiment until college, but I'm pretty happy little Nettie is learning the wonders of morphine right now.

Nettie just went to the OR

She got bumped up in the schedule, which we're happy about; less time to worry and it will be the doctors first surgery of the day. Julie got some snuggle time, I played her some songs, her eyes were open, she seemed really happy and awake. Then, for the first time, she didn't cry when we lifted her out of mom's arms to put her back in bed, and she went to the OR so peacefully. It was the best we could have hoped for. Wish her (and us) luck!

bird on the wire(s)

<Julie writing> We found out today is that Nettie's surgery will now be the 2nd one in the day rather than the first. The upside to this is that we'll be able to hold her in the morning beforehand. They're estimating her surgery will begin between 11am-1pm. We hope to get more skin-to-skin time and I'm sure some cries. But we both feel better when we hold her. We know this contact is suppose to be good for her and it's pretty evident that it is, but Lou and I both agree that it's very good for us!

While hanging out with Nettie, Lou was cracking his corny dad jokes, of course. He was betting that Nettie will think he's funny until she's 13, maybe 12. Teasingly, I thought he might be overestimating this age. We talked about starting a pool to see what age Nettie will stop thinking her dad is funny, any takers? I've got my money on 11.

<now Lou> Overall, it was another really great day with Nettie. We got a lot of skin to skin time in, we met her surgen, talked to the anesthesiologist, and the Chaplin said a beautiful prayer for Nettie where she talked about eating ice cream with Nettie in the future, and how, even if we were Bill and Melinda Gates, we'd still be at this hospital for Nettie's surgery. Julie and I were bawling our eyes out, but it was a good cry.

This morning I played some songs on the ukulele for Nettie Maude, and she opened her eyes! Her eyes have mainly been closed, partly due to the drug that is allowing her blood to mix and keep her alive before surgery. Her eyes were also open when we came in this evening after dinner (one small bonus to all this as new parents is that we have a full time nurse and we get to go eat, rest, and shower, while someone takes care of Nettie). We still can't really tell if they're brown or dark dark blue, they have this captivating quality to them though. Plus we've heard kids eyes can change color early on, or something like that.

We wanted to include this photo to better show how many wires are attached to Nettie right now, especially because after the surgery, there will be a lot more. In most of her pictures, she's swaddled, so its hard to see what's really going on. We're so happy that we can hold her now, but we can't wait until she's better and we can pick her up without worrying about a vital IV falling out. Our really sweet nurse tonight, Keri, was telling us how the nurses have to remind themselves that this isn't normal for the parents. It was actually very reassuring to hear. I'm glad we're at a hospital where this seems normal. If you look closely at the pillow to the right of Nettie, you can see the beanie baby version of our dog, Belafonte, so miss Maude can get acquainted with her in the hospital.

removal of the plastic mustache

Today has been a good day. Nettie has been doing really well, and this morning they removed the tube that was blowing air into her nose; no more plastic mustache. Even more exciting, last night we learned from Nurse Gina that not only can we hold Nettie Maude while she'd swaddled up, but we can get all hippy and do skin-to-skin contact with her. She looks so peaceful and contented while we do this, you almost forget she's got IVs and monitors all over her. The birthing hospital has posters everywhere, including our room, of shirtless moms holding naked newborns to promote skin-to-skin contact and how good it is for babies and bonding. These had been making me feel like a bad parent every time I saw them; now I feel like we could be in the photos. More importantly, our little girl seems so happy while snuggling.

A side effect of her heart condition is that, until after the surgery, they can't put any food into her stomach (something to do with the drug they're giving her to keep her blood mixing as it did in utero). Newborns don't actually eat that much, so this isn't that big of a deal (more on this later too), but she is starting to get a little cranky. When Julie is doing skin-to-skin, she has to be careful not to let Nettie find her boobie. Today, Nettie found her dad's nipple, but then started crying when she realized it was a fake. Life is tough, kiddo.

To give more props to our hospitals, Brigham and Women's (for labor), and Boston Children's (for surgery), have been amazing about promoting and facilitating breastfeeding. Even though Nettie Maude can't nurse and eat right now, Julie is pumping, and they are labeling and freezing the colostrum (pre-breast milk stuff chock-full of goodness for babies) and milk to feed it to Nettie, in the order it was produced, after the surgery.

Other good news - because Nettie can't have food in her stomach, today they put in a PICC (peripherally inserted central catheter) line so they can send nutrition straight to her blood stream. The PICC is basically a really long IV that goes through an arm or a leg and follows a vien to almost the heart, where whatever they put in there gets distributed throughout the body. Nurse Gina said they can then give her the equivalent of a steak-in-a-bag, which will happen tomorrow morning. I like to think of it as the apogee of room service. And I would demand nothing less for my daughter.

Say hello to Nettie Maude Parker Thomas!

(this is a repost of an email we sent out:)

At 9:45pm on Thursday October 11th, 2012, Nettie Maude Parker Thomas entered the world, a beautiful 8 lb 2.6 oz baby girl with a full head of black hair. Her parents couldn't be more smitten. Probably because she's such a perfect baby, the gods made sure her family would have some sort of struggle. Nettie will have to have heart surgery this Tuesday (tentatively). The chaplain described it as needing her plumbing fixed; I less elegantly described it as having her heart pants on backwards. Fortunately we recently moved to the Boston area, and are literally at the best hospital in the world for her particular surgery; so even though it is complicated and scary, she's in the best hands, and chances are she'll lead a healthy normal life, with many visits to the cardiologist. Below is a (not so) quick account of Nettie Maude's incredible entrance into this world.

When Julie and I found out she was pregnant, we signed up at a birthing center with a midwife and enrolled in Bradley Method natural childbirth classes. Julie really wanted a drug and intervention free birth, with my full support. During a first trimester exam in the spring we were "red flagged" that something might be awry. By the end of April the doctors in DC had figured out there was something wrong with the baby's heart. We switched first to a midwife in a hospital, then to a high-risk OB, with everyone agreeing that a vaginal birth was best for the baby, as she was completely fine in utero. By then I had accepted the doctoral program at MIT, Julie's job transfer was looking promising, and the cardiac doctors in DC were already in comunication with the doctors in Boston. The diagnosis changed throughout the pregnancy, which is common, but lead to too many hours reading online and freaking out about conditions that our little one didn't have. Dealing with all this during the pregnancy perhaps replaced some of the bliss with a good amount of stress, but Julie and I are so glad we were prepared for where we are now, which would have been so much harder had we not been processing for the past 6 months. We still had all the joys of feeling her kick and seeing her chubby cheeks and head of hair in ultra-sounds. Well, maybe Julie didn't really enjoy being kicked in ribs everyday for a few months, but you know what I'm saying.

The doctors in Boston have been amazing, and our OB decided to let Julie go to 40 weeks before inducing, instead of the standard 39 for cardio babies, in the hopes that Julie could go into labor spontaneously. It is also common for cardio babies to be premature, which makes the surgery more difficult. The proof is in the pudding that our chubby little 8 pounder is as fit for the surgery as anyone could have hoped. Another aspect of the heart condition is that Nettie could have been born "blue", and then would immediately have to be whisked away after birth. If we got lucky and she was born "pink", Julie would be able to hold her for just a minute or so, before she was taken to intensive care. Julie really wanted to hold her for a second if possible, and the doctors seemed open to try that. On top of that, the hospital has a volunteer doula program, and a special sub group called "Heart to Heart" (http://www.birthinggently.com/hearttoheart.html if you're looking for a worthy charity cause) that works with high risk pregnancies. Our doula Justine, and back-up Yael, were two of the most amazing people we've ever met, and without them Julie would have likely have had a caesarean, and be suffering from severe postpartum depression.

40 weeks arrived without any natural labor, so at our exam last Tuesday the 9th, our doctor scheduled an induction for Wednesday. At that exam, though, Julie was dilated to 1 cm and about 30% effaced (apologies to the non-breeders for the labor lingo; a baby needs 10 cm to fit through), which was promising. After spending about 8 hours at the hospital on Tues, we arrived 6am on Wednesday for the induction. Around 8:30am, they gave Julie cytotec, a cervical ripener, which can take hours or even days to start working. We went for a walk to the museum, which was too expensive to enter, and I fought a terrible cold, stupidly taking too much medicine on an empty stomach, which combined with nerves, made it so I couldn't keep any food down until the next day; hell of a birth partner I was turning out to be.

At 12:30pm Julie got re-examined and had dilated to 2 cm and 50% effacement. The doc thought it was time to move from triage to the labor room and start the low-level pitocin, a synthetic version of the hormone released by the body to start contractions. Our first nurse, Diane, was super great and supportive of our birth plan for no pain meds, but did say most inductions usually end with an epidural just because they take so so long. By late afternoon Julie's contractions were steady, she was handling them, but I was seeming sicker, so we called the doula in. Julie and I were both scared the doctors would kick me out of the room for fear of getting the baby sick. Justine showed up around 7pm, and my constant sneezing was starting to subside. Having the doula there allowed me to get a power nap, pull myself together, and be the birth-partner I needed to be. 

By the end of the night, despite consistent contractions, Julie wasn't making much noticeable progress, and some doctors (mainly the residents, not the head, actually) started strongly recommending that they break Julie's water to try and jump start the labor (basically induction is trying to trick the body into thinking it is ready for something sooner than it really is). Julie, in consultation with me, the doula, and our wonderful night nurse Stephanie, went back and forth on this. On the one hand, breaking the water will cause the baby's head to press on the cervix, which naturally releases hormones that start labor, so it's sort of more natural than upping the pitocin. On the other hand, more interventions tend to lead to further and more severe interventions, so that was a palpable fear. Julie decided to have her water broken around midnight, and the doctors kept her on the pitocin at less then a third of the maximum. In Julie's water, the doctors noticed "light" meconium, or baby poop, meaning Nettie had done some business and possibly swallowed a little, which is very common, but can add further risk.

Pretty quickly the labor became incredibly hard, and with the pitocin, her contractions were non-stop, with barely 30 secs in-between, no real time to recoup. Julie powered on like that for hours, with Justine coaching and me assisting her breathe through all of it, letting out deep guttural raw animal noises, trying tons of different positions to get into her natural birthing rhythm. She went to this zone that I had never seen in anyone before, it was the strongest I'd ever seen a person be, I fell even deeper in love with her. Around 3am, she made a half-joke that she should have scheduled an c-section, and then soon started asking for an epidural. Justine and I suggested she have an exam and see what progress she had made before she made that decision. We both thought she'd be at least to 4 or 5 cm, which would have been real progress. Despite all her hard work (Justine later said it was longer hard labor that she had for her first child) Julie was only at 3 cm at 4am. Very smartly, Julie opted for an epidural, 22 hours after arriving at the hospital. When they stopped the pitocin to get ready for the epidural, her contractions completely stopped, which meant the drugs hadn't tricked her body into laboring naturally, but rather were forcing it. 

With the epidural, we were all able to get a few hours of much needed sleep and wait. An epidural makes contraction painless but also numbs the legs so Julie was now bound to the bed. Julie slept on and off for most of the day. Our primary doula, Justine, went home for a few hours to rest, and our back-up doula Yael showed up around noon and ended up staying through till the end, even after Justine got back. While Justine was away and I was out getting coffee, a doctor from the NICU (natal intensive care unit) came by and told Julie her report cited "heavy" meconium, which meant that Julie may not get to hold Nettie when she comes out. Julie told her that the doctors who broke the water described the meconium as "light" and super thursday Day Nurse Kate confirmed that from her reports. When I ran into the NICU doctor in the hall as she was on her way out of our room she told me the same "heavy" story, but the coffee was in my hand, not in my system, and I was too out of it to tell her I remembered "light". So after that, we all were mentally preparing for little Nettie Maude to be whisked right away. 

By 3:30pm Julie had progressed to 8 cm! We were all so excited. Our nurse Kate took amazing care of Julie. The doctors (it's a teaching hospital so tons of rotating doctors) said she should progress 1 cm per hour now. At 5:30pm, she was only 9.5 cm, with an "lip" or bump-out on her cervix. The doctors said they would give her one more hour, after that they would have to perform a c-section. At 6:45pm on Thursday, over 36 hours after we arrived at the hospital, Julie was at 10 cm and the baby's head was past Julie's pelvis ("over +1" for the breeders); it was push time!

Despite the medical interventions, Julie still had to push like the dickens, like a bazillion dickens, to pass baby Nettie through her hoo-haa. They say a first time mother will have to push for 1 to 3 hours, and Julie pushed for all three. Our beloved Nurse Kate handed off the reigns to Nurse Jen reluctantly due to a carpool at 7:30pm. Nurse Jen turned out to be the pushing coach of the year, quietly whispering to Julie when to push and when to rest, even when the young resident doctors were over-eagerly telling Julie to push. It was one of the most diplomatic and effective actions I've ever witnessed. Around 9pm a young doctor came by, who was a little excitable for my tastes, and gave Julie a stern talking to about how they may need to use a vacuum to get the baby out. I was a little pissed off at the guy, but man did that motivate Julie to push! That was exactly what Julie needed to muster the inner strength to get the baby out.

At 9:45pm, almost 40hrs after we checked in, Nettie Maude came out, she cried(!, a great sign for a cardio-baby!) and the doctors put the naked baby right on Julie's belly while I cut her cord (even while a "head-honcho" doctor who had been in the back checking his cell the whole time was yelling "get that baby off of her"). They cleaned up little Nettie, she had a great apgar score (good signs and "pink"), they swaddled her up and then let Julie hold her for a few minutes. Baby Nettie tried and almost found mommy's nipple, but then it was time for her to go intensive care and prepare to transfer to the children's hospital. 

Our primary doula stayed with Julie while Yael, the back up doula, came with me as we followed Nettie first to the NICU at the labor hospital, where they put IVs in both her hands and did a bunch of other tests. After 30 mins we followed her as she was transferred via an enclosed pedestrian bridge to the Children's Hospital next door, where the night team of cardiologist were waiting. We stayed there and got a mini debriefing while the doctors prepared to do the tests that would determine exactly what heart conditions our little one had. Nettie's room has a little bed surrounded by a virtual wall of machines, like a Cronenberg version of Dr. Frankenstien's lab. But fortunately I had seen it in a tour a few weeks before, so I wasn't shocked or freaked out. 

Sleep.

Friday around 9am or so I pushed Julie in a wheel chair over to the Children's Hospital. The doctors had taken all their tests and told us the final diagnosis:

Nettie Maude has a VSD, TGA, and a coarctation.

VSD = Ventrical Septal Defect, i.e. a hole in her heart. This one is a pretty easy fix, and the hole actually helps with the next problem before surgery

TGA = Transposition of the Great Arteries - this means the out-flow & and in-flow veins to her heart are switched (i.e. my bad "pants on backwards" analogy). This is the tricky operation, but again, we're at the best hospital in the world.

The coarctation means there's a speed bump in one of the arteries leaving the heart. It's not that tricky of an operation, but tricky in that the surgeons need to do all the three operations at once.

They've only been doing these surgeries for 35 years or so, but there are some older TGA kids in med school and on athletic scholarships, so she's got a really great chance at a normal life (with lots of doctor visits).

So right now she is stabilized with some medicines, and tentatively set for surgery on Tuesday. Between now and then Julie and I can take turns holding her, though she has to stay hooked up to two IVs and many monitors. The doctors think we should hold her as much as possible till surgery, and we concur. After surgery we won't be able to hold her for a while. She could be in the hospital for up to a month depending. Then finally, once she's healed enough, we can take her home.

Witnessing Julie's inner strength during labor, the unbelievable support from our doulas and the hospital staff, and the great doctors and nurses at the children's hospital have all made this the greatest thing that I've ever experienced. And I haven't even begun to talk about what a miracle Nettie Maude is, the feeling of love that comes over me while holding her, watching Julie hold her, and just thinking about her. Right now as I type this Julie is singing to her, and I can't help but tear up.

I know this email is too long, but since this really has been the best of times and the worst of times for our family, we really wanted to share with all of you, our extended family, what's going on. To the people whom we've already shared knowledge of Nettie's heart condition, your support has been invaluable. To everyone, we ask you to hold little Nettie Maude in your thoughts and prayers as she struggles through this tough time, and we can't wait for all of you to meet her once we make it to sunnier days.

With Love,

-Lou & Julie & Nettie