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!