Thoughts on not moving, deer attacks and other important things (Luna's Tuesday appointment for her sedated echo)

I feel like I am finally settling down and accepting the daily rhythm of our lives together. Just days before Luna was born, Paul and I created the best distraction going and decided to put our house on the market. In retrospect I think we both needed something huge to distract us from the seemingly steep mountain we faced with the delivery and surgery of Luna. So, early March Paul and I agreed-in complete accord-that we would put our house up for sale and look for new digs. The new home would have everything we dreamed of. The distinction of age (at least 80 years old), original fixtures including antique moulding, wide pine floors and of course a barn where Paul could toil away late at night on his latest passion-be an old VW Bus, discarded bureau or perhaps even getting back into welding as his did so passionately as a student at Wentworth College. For three months straight we packed up a newborn, a 2 year old, cleaned out the cat litter and bunny cage and hit the road in search of our dream home. After viewing property after property in the surrounding towns and enduring 50 showings at our house (yes 5-0, that's not a typo) we decided not only were we not going to get the windfall price for our home that we would have a year ago, but there is no other place that we rather live. I love my little city. There is so much I could ramble on about...the people, the beaches, the restaurants, SMA... and never mind the fact that the biggest crime to hit was the decapitation of a giant ant. I can finally say that we are totally and completely home.

Luna's sedated echo:

Now that I'm not running around crazy packing up kids and losing my mind while my 2-year-old pulls out every article of clothing from her bureau just moments before a showing, I can really take in and accept the road ahead for Luna. Her sedated echo is this coming Tuesday. Aside from the mild sedation-which again is needed because Luna doesn't care to have a probe pressed against her tiny chest for over an hour-it's really nothing more than an ultrasound. Completely non-invasive. The point of this echo cardiogram is to determine: a. how well the balloon-catheter worked from a few months ago (thinkgoodthinkgoodthinkgood) and b. how her shunt and surrounding arteries and of course heart are looking so the doctors may determine when her Glenn will be performed. The general thought is sometime this summer. The exact date as of this writing is unknown. After Tuesday we should have a clear picture on Luna's next repair.

Other than not moving, and thinking about Luna's upcoming cath, we are doing normal things like going to York Wild Animal Kingdom where Sienna was stampeded by deer. This photo pictorial shows you a step by step of how it all went down:








As you can see in this last shot the little deer's mouth is agape and clearly he doesn't look happy. What happened next is the two deer you see here, along with four others in their posse, ganged up on Sienna and decided she had better have enough food for all of them-or else. I looked over to see Sienna engulfed in fur and horns so I quickly threw my camera down to save her. The scuffle was brief, but she hasn't been the same since. And in a strange coincidence, or perhaps it was a warning from the deer posse, one lone deer casually munched on our shrubs in the backyard yesterday morning. Normally this would have been a cute spectacle, but Sienna simply looked out the window and said, "Go away Deer".

Conversations with Leo

Luna has shaped up to be quite the conversationalist. Within the last few weeks she has really taken to babbling. She's only 2 1/2 months, but I swear, this baby can chat up anything! In fact she shares the same birthday as Rupert Murdoch. OK, so I'm not sure if he's a great conversationalist, but isn't he king of all media owning the Wall Street Journal (along with the Dow Jones). Perhaps big, BIG media plans are in store for Luna.

This cooing and shrieking started a few weeks ago while we were all driving. Above the hum of the road and the blare of kid-friendly radio (read: bad music) we could hear Luna in the back. Her high-pitched shrieks and gurgling noises rose above everything. Paul asked if she was crying. I looked back to see her completely engaged with the little lion hanging off her carseat handle. She was totally smitten-as we could see her reflection in the safety mirror harnessed to the back seat (which is not at all safe since I'm constantly trying to look into it from my rear view mirror while I'm driving). This conversation went on for miles. Until she finally got fed up with Leo and started crying. Not a hungry cry, nor a tired cry, but a real get-out-of-my-face-you're-annoying-me-cry. I reached back and pulled Leo off the bar and she immediately settled into a deep sleep.

But it didn't stop there. Every time I have her in her carseat, be it in the house, in the yard, on the deck with Sienna; Luna carries on with Leo like they are the dearest of friends. However, today there is tension between Leo and Luna. Once again we were all driving. This time to buy Sienna some Crocs (pale yellow with a mushroom and...a lion charm!). Luna was once again making noises from the backseat. They started low and infrequent and I thought she might be hungry again. But gradually they bubbled into full yelps. At one point she sounded like she was whining. When I turned back I noticed that Leo had turned his back on her. Apparently there was an argument. Words were exchanged. Leo wanted nothing to do with Luna and she was pleading with him. I finally pulled Leo off and dangled a monkey in its place. Mr. Monkey wasn't much for conversation and within moments Luna was fast asleep. Sadly, Leo and Luna haven't spoken to each other since.

Luna is two months old!

I can't believe it's mid-May already. It seems like April flew by in a flurry of birthday parties and doctor appointments. During the last three weeks of the month we celebrated three birthdays. Ava and Maxwell turned two and Grammy turned 2+2+2+2+2...all the way up to 68! As a result Sienna thinks every day is someones birthday (actually, I guess she's right). She doesn't understand the concept that one's birthday happens only once a year. Every time we're packing up to leave the house (usually for yet another showing...in the midst of everything we're trying to sell the house...hence the radio silence on my end...who can blog when all you're doing is cleaning the house) Sienna yells excitedly, "I ready to go to Maxwell's birthday party!". Maxwell is Sienna's best friend at daycare. Apparently his construction-themed party made an impression on her. (and I have to admit, it was good. Claudette, his mommy, completed the look with yellow caution tape strewn everywhere, a huge tub filled with Chex cereal and digger trucks, all while the flat screen TV aired video of buildings being demolished). Oh, to jump in the mind of a two year old where it's a birthday party every day of the week.

Meanwhile, Luna is doing fantastic. Monday she had her two month check-up. Dr. Goodnews entered the room once again donning a mask and gloves and got right to work weighing her and listening to her heart and lungs. Luna weighs 11.2 and is 22 inches long. She's just over the 50% percentile for weight...which I must stress with these heart babies is ah-mazing! She eats all the time, so I was almost expecting it. And frankly I think I would have been a little miffed it she was anything under (it's a lot of work being the sole source of nutrition for an 11 pound human!). She's at 25% percentile for length...but hey, she was only 19 inches at birth, so I think 3 solid inches is great progress. Meanwhile, Mama dropped a quick 30 lbs. I guess there is a bright side to not being able to eat dairy. Now, if I didn't have to go and gain 50lbs I might actually fit into my old clothing. Oh well, all those Friendly's frappes during my pregnancy did the trick in fattening Luna up for birth-which was more than worth it.

Tuesday I took Luna to see her cardiologist. There she endured an echo cardiogram so her doctors could see how well the balloon cath worked. Well, guess what? The balloon cath worked it's magic! Her pulmonary artery is substantially larger-not so narrowed as it was. Her lung scan performed the morning after her balloon cath (now a month ago)was pretty much the same as it was before the procedure. Her left lung is working at about 30% and her right lung is at 70%. This alarmed me at first. But then Dr. Brown explained that most folks don't walk around with 50/50 lung 'power'. Most of us are lopsided and favor one lung over the other. So if we all went and had lung scans we most likely would read 45/55, 40/60, that type of thing. After Luna's lung scan I have to admit, I was imagining the worse. Could she live with just one lung and a single ventricle? Dark thoughts raced through my mind. But we needn't even go that far. Luna did well. The cath did what it was supposed to. And aside from her mild colic (evening time is not...quiet...lots of crying in this household) she is doing amazingly. She is such a happy baby. And peaceful.

From here we have a solid plan. In two weeks she'll go back to her NH card for a follow-up visit. Then in mid-June she goes into Boston for a sedated echo. This isn't as serious as it sounds. The sedated thing is because it's not easy to get an infant to sit still without wailing while a probe is pressed against her chest for over an hour. Then...the biggie...mid-July is when she'll go in for her Glenn operation. That will be her 2nd of three open heart surgeries. July will be a big month. Paul and I both turn 35 years old (I think that's sort of a big birthday, don't you? I remember as a kid when friend's mothers were 35 and it seemed, well, not old, but certainly very adult). And if all goes well with the sale of our home, we'll be moving. So, just a wee much on our plate. But we'll manage. And how nice will it be to be settled in our new home with the Glenn behind us.

And now for the technical stuff...

A few weeks ago at one of Luna's appointments, her cardiologist drew a picture of her heart. This is not anatomically correct as she wanted to make sure I told everyone, but it does give you a pretty good idea of what Luna looks like on the inside.

And this is a normal heart...


As you can see right away Luna's heart is flipped. That is due to her dextrocardia. Then you'll also notice she only has one ventricle, rather than two, and in fact where you see four chambers in the normal heart, Luna really only has one big one. (I know, it's almost unbelievable...I often look at her pink smiling face and think in amazement of how different her heart is from mine or Paul's or Sienna's). I am slowly understanding her anatomy (or anyones for that matter...why or why didn't I pay attention in biology class??...the fact that I can't even remember who my teacher was or whether or not I even took it is not a good sign!)

As I am finally understanding all this, most of Luna's surgeries are/will be like re-routing the plumbing of her arteries. One of Luna's diagnosis is Pulmonary atresia-turns out pulmonary simply means lung and atresia means 'missing'. Translation: Luna is missing a piece of the branch that goes to the lung. That was the first correction she had in her surgery at 2 days old. Now, as it turns out, she also has pulmonary stenosis...stenosis means narrowing. Translation: the branch leading to her left lung is narrowed. For this we'll all head back into Children's this coming Sunday so Luna may undergo a balloon catheter. This is a procedure that's been around for over 20 years. Luna will be admitted Sunday so she may be sedated and set-up on an IV of fluids for the night. Then on Monday morning the doctor will insert the cath into her groin, specifically into the main artery called femoral artery. The cath will have a tiny balloon on the tip. Once the cath is snaked through her body and up into her left pulmonary artery the doctor will inflate the balloon in attempt to enlarge the 'branch'. When I was first explained of this my stomach sank, but it turns out our arteries, and particularly those of babies', are really resilient. Realistically Luna may have to undergo this procedure a few times before the artery finally stays open on it's own, allowing for blood and oxygen to once again flow freely into her left lung.

So, please be thinking of lil' Luna this coming Monday. Hopefully this balloon is going to work it's magic and open up that pesky artery!



Here's Luna just yesterday...she's a big 5 weeks old now!

First smile!

How funny is this. For the past few weeks, Paul and I have been standing on our heads, cooing and making silly faces, and Luna gives us nothing. Paul even dusted off his famous baby voice for Luna and still, all we get is a wide-eyed stare. Actually, we often get a frown or a pout, with an expression that says, "what are you guys trying to do and whatever it is, stop it!". Yesterday, my friend Kristen stopped by for a visit and as soon as she scooped up our little bundle, Luna was hooked. Luna couldn't take her eyes off "Auntie Kristen" the entire time. As soon as Kristen started talking in her baby voice (we all have one) Luna was cooing, gurgling and smiling. At one point as shown in this photo, she looked to be almost giggling! Once again, Kristen lives up to her 'baby whisperer' reputation. To be fair to the rest of us, she has a degree in childhood development. Hmmm...so it takes a degree to get a baby to smile these days. That must be it!