Monday, December 29, 2008

A Quiet New Year

Paul and I have initiated and cancelled three separate New Year's Eve plans. One plan, fastidiously and secretly planned by Paul, had us heading north to Montreal. Paul had big plans for us, which included another couple and had us staying at the best hotel and attending 'the' hot event in Montreal.

But leaving Luna behind to live it up in another country is definitely not what this Mama had in mind for the holiday.

While life with Luna seems normal and for the most part it is normal, I think I've gotten used to the level of care, which, while not abnormal, is definitely not what your heart healthy kid endures.

Take for example the synerigist shot. These are shots that Luna will endure, exactly every 28 days for the entire winter season (which here in New Hampshire is a solid, oh eleven months, okay, six anyway). Her next shot, which will be the second of the series, is tomorrow morning. Exactly when we were scheduled to head-off for O-Canada. The 40 minute round trip drive to the doctor's, not including the time in the office, is really not bad. But of course I work out of my home and am my own boss. For a dual working family, the 2 hour procedure that must occur exactly 28 days, is, I imagine a source of stress for many.

I should explain what a synergist shot is. The shot is given to high risk babies to help stave off RSV. RSV is a respiratory disease that can wreck havoc even among perfectly healthy babies. (one of my on-line friends springs to mind...her perfectly healthy 12 month boy endured a hospital stay far longer than any of Luna's. And during which the baby was on oxygen pretty regularly.).

So, you can imagine what a disease like that could do to a baby with already lower-than-normal sats.

Needless to say, leaving my baby behind in her Memere and Pepere's care just didn't sit well.

Then Paul and I decided we'd go out on the town. The 'town' is exactly 3 miles from my house and boasts more restaurants per capita than the Big Apple. If, God forbid, we were to receive some type of phone call where we needed to rush home (in reality the call would be in reference to Sienna, the perfect drama queen and not Luna), Paul and I could be home in exactly 15 minutes.

But no one wants to babysit. And not because it's the Big Night, but because no one feels comfortable caring for Luna. I had never even considered this.

I had arranged for a college-aged girl to watch the girls a few hours here and there over the holiday. Paul is on vacation til the 5th and the thought of us dashing off to a movie was so good it felt decadent.

But then my babysitter cancelled. And she cancelled again. Finally, her mother, and a good friend of mine confessed that her daughter just felt too nervous caring for Luna.

My friend delivered this information to me over a glass of wine and the words, like sour grapes, choked me as I listened. I realized, as the sentence "I needed to tell you, and Julie will be upset, but I had to explain the situation..." hovered between us, it wasn't the night and not being able to go out with my husband. It was the reality that heart disease is about so much more. And I would be lying if I said the stigma isn't there. It's there in the way people don't ask about Luna, or how they pretend not to notice the adorable baby right in front of them. I have sensed this on many occasions now, and my friend's words seemed to set-off a back-up system in my memory, where suddenly every incident where extended family, friends, and causal acquaintances seemed not to notice the only baby in the room, came rushing forth.

At the end of the night I was thankful for the honestly from my friend. I had started to breath again, and had tricked myself into thinking things are normal. But they aren't and they never will be. But since I first learned of Lu's diagnosis, my mantra to myself has been, "this heart baby will be the best thing to ever happen to our family". And reflecting back on the year that was, I do believe she is.

Monday, December 8, 2008

A Heart Mama's Guide to Holiday Giving.

Our visit to see Mr & Mrs Claus. Luna screamed herself purple and now Sienna is so worried Santa won't come because, "Luna was cryin' all over the place on Mrs. Claus' lap!"

It's amazing how much can happen in a baby's life during the six short weeks since I last posted. Luna sprouted her two bottom teeth, she's standing (assisted), clapping, waving, laughing, babbling REALLY loudly, and has endured more shots in the past few weeks than any human should. On Thursday she'll turn a whopping nine months. This is my absolute favorite age in the world of babies. Beginning at around six months when they really start to blossom, watching the personality that emerges makes for a steady stream of joy and wonder. Luna, in her infinite and often unbearable cuteness, brings on the urge in many to simply take a nibble off her generous cheek. When she wakes in the morning she will happily babble and play with her stuffed animals in her crib for hours. Every moment of her life seems to be filled with giggles and yelps and a never ending game of peak-a-boo, always pulling up and yanking down her blanket with such force and zeal. Sometimes she will linger while holding the blanket in front of her face until she finally crumbles into an infectious bout of the giggles.

But don't taunt her or tease her or hold out on feeding her. Then you'll hear it. Sienna will often give her food, and then pull it away. Luna makes it known, often with a good shove, that she will not tolerate such cruel antics. She is developing a strong sense of being which I hope will ground her when she's faced with special challenges, both heart and otherwise.

It's hard to imagine that last year at this time I was chasing a 21 month-old, struggling to keep her pace while my back ached and buckled under the weight of Luna kicking-pounding more like-from inside.

The year, it goes without saying, has been monumental. Another birth by c-section, followed by two open heart surgeries and a very invasive catheter procedure endured by Queen Lu (the surgeries and cath, the c/s was all mine). Though I honestly cannot complain, so many of my heart family companions endure far more hospital stays, for much longer stretches than we did. With this in mind I've come up with a brief list of ideas for holiday giving:

Give blood. Blood donations are at an all time low and the reserves are critically scarce. I read and article recently how hospitals are using blood that is older than they like (yuck). So blood that has been stored, that normally would be discarded after an extended shelf life is being used. Of course, my first thought is, if blood is running short, then most likely it's not shelved for very long. At any rate, I drive by many blood drives a week and they post huge signs of desperation, begging for patrons to stop and roll up their sleeve. The best part of course, is it's free. And you usually get free swag like tee-shirts, snacks, cookies and mugs. Luna, at barely 9 months has already received two (or is it three now?) blood transfusions. In the case of undergoing her catheter to open up her left pulmonary artery, her little body was having trouble retaining safe oxygen levels so blood was administered to boost them up. (the donated blood carried healthy oxygen levels and thus was able to mix with Luna's blood, giving her a much needed boost in her sats). You can easily find out where your local blood drives are by visiting The Red Cross website here.

Gift bags filled with goodies to leave in the family room of any hospital. After the Glenn operation Luna-and all children-are brought up to the ICU where they are hooked-up to their banks of meds. As parents, we are called to the floor and then asked to wait in the family room until your child is stabilized. This is probably THE worst part of the entire experience. Your baby has just endured a major surgery and now you are asked to wait for what seems like an eternity before you can greet your sedated child in her ICU room. As Paul and I entered the Family room (just a small room with a kitchenette, TV and a few toys), someone had left a huge basket of sweets and gourmet popcorns from Au Bon Pain along with a dozen or so gift bags each filled with a toothbrush, tooth paste, travel-sized shampoos, soaps, candy and chips. Really, the gifts were incredibly simple, but to Paul and me it provided a much needed distraction and boost to our low morale.

New toys, strollers, or infant seats. Perhaps your little ones received TOO many gifts and you need, for your own sanity, to unload some. Any Children's hospital will GLADLY take unopened baby gear off your hands. AND if you have the receipt you can use it as a tax write-off.

Cash donations. Maybe you're one of the few this year who had a GREAT year and you need to unload some cash. Any Children's hospital happily assist you. With this not-so-stellar economy even hospitals are struggling (heck, even Harvard University, which practically sits atop the original Boston Children's Hospital building, and provides the education for many of the fellows at CHB, lost 22% of their endowment!). And, if you donate enough you'll even make the Wall of Big Donors in the main lobby.

So, there you go. Four Heart Mama-inspired giving ideas that range in cost from free to the big bucks. You may never know exactly who will receive your gift. But you can be assured that no matter how large or small, your gift will make someones day, and possibly even save a life.

Sunday, October 26, 2008

Post Glenn Groove

It's been just about a solid month since we returned home from the hospital. We've finally settled into a nice groove. It's funny how when you're in the middle of things, say routine things, like the get up, pull kids from cribs, change diapers, make coffee, pour Sienna's milk (first rifle through cupboard for clean sippy cup, matching lid and corresponding valve for lid), get myself dressed, get baby dressed, get toddler dressed while pretending not to be so she can believe she's dressing herself, pack lunches, pack bottles, find clean infant spoon and grab jar of baby food, make sure enough diapers and the right sizes for both girls are in the bag, and on and on throughout the day, every day, seven days a week. Though sometimes it's broken-up, like on the days I go downstairs to work, or on location. Before the Glenn the monotony of these actions could, and often did, put me in a harried and unpleasant state of mind. The petty routines and cyclical nature of make bottle, clean bottle, make lunch, clean lunch mess, dress baby, undress baby then repeat several times a day with each accident, blow-out, or spilled bottle. On my worst days these mindless chores could break me. I think, perhaps when stay-at-home moms feel overwhelmed it's because of the relentless rotation of these simple tasks. Add to the tedium a crying baby and a whiny toddler, and then isolate said mom for seemingly days on end, and it can be the bane of many a woman.

Ironically, however, it was the very monotony I craved while in the hospital. The experience is similar when I fly. I loathe flying. Being trapped in that metal tube, strapped into an uncomfortable seat, breathing in the recycled, artificial air definitely ranks first on my least favorite activities list. Often when I fly, and especially when we hit turbulence, I think of all the things I rather be doing other than sitting strapped into a seat at 30,000 feet. My thoughts become hedges and when turbulence strikes, suddenly I think how yes, I would LOVE to be cleaning the cat litter at this moment. And the dull, yet grotesque task of scrubbing the toilet suddenly becomes just as desirable as sitting on the beach with a good book. Our stays at the hospital conjure up the same type of 'strike a bargain' type thinking. Sitting in the ICU room, while Luna was hooked up to machinery, with just a tiny TV screen and no view other than that of the grey, cement exterior and mostly drawn windows of hospital rooms, I thought to myself I'd give anything to be washing sippy cups and bottles right now. An entire sink full of milk encrusted lids? Not a problem. Oh there's five loads of laundry, and the kitty litter needs to be changed. That's wonderful!

As I sit and write this, a pile of dishes mocks me from the sink, and the clean silverware in the dishwasher, run last night, is begging to be released from their stainless steel cell. In another hour, Sienna will start hollering for me from her crib, and Luna will pound her legs into her mattress, her way of letting me know she's ready for the day. Diapers will be changed, and perhaps bedding too; depending upon how well bottles and sippy cups held up during the night. The dishwasher will be emptied, and last nights dishes will be loaded into the machine. Then Paul and I will make something special for breakfast, something like homemade blueberry pancakes and bacon or something else just as laborious and have another load of dirty dishes to contend with. Yet, now with a fresh perspective and yet another major surgery endured by my baby behind me, but also in me forever, the every day tasks somehow feel lighter. Idely running warm water through a bottle while listening to the tv or radio while Sienna's tiny voice bubbles over just enough for me to hear the conversation (usually entails her in a complicated plot of caring for eight different baby dolls who always seem to need her unyielding attention) and the occasional squeal of Luna surprised once again by her reflection in the mirror, is something to inhale, a seemingly non-moment that has become somehow monumental in its very subtleness.

Wednesday, October 1, 2008

We're home! (The Glenn Operation: the week in photos):

Well, Luna proved miraculous and was discharged from the hospital Sunday afternoon. Things are back to normal-sort of. Health-wise Lu is better than anyone expected; in fact, healthy despite the fact she had open heart surgery just a week ago. Emotionally, she's a little off. Yesterday, we had our follow-up with her pediatrician who I'll continue to call Mr. Goodnews because indeed he is full of it. He checked Luna's pulses and felt for any swelling of her organs and on both counts she was fine. Her heart sounded good, lungs clear. I told Dr. Goodnews that she seems spooked from the whole ordeal. I explained how she's having trouble sleeping and how the moment I move from her field of vision she lets out a real "don't leave me I'm terrified" kind of cry. It's painful to see. And at night she will only settle down when she is sandwiched between Paul and me in our bed. Dr. Goodnews, who is nearing retirement and rather old-school, simply said to get her on a routine and not to worry about letting her cry when we put her in her crib-Luna can handle it. He said she suffered a simple case of 'hospitallitis'. So, yesterday during her nap I did just that. I let her cry for about 5 minutes and wouldn't you know she finally settled down into a 2-hour, much needed (for both of us) nap. Here it is Wednesday afternoon, a week ago she was in the OR, and the only ailment she suffers is a minor case of hospitallitis.

Saturday, September 27, 2008

A visit from Sienna

I regret telling everyone I wouldn't be able to access this site. Strangely, this is one of the only sites I can post on. All my usual web haunts are blocked by these stinkin' HIPPA laws, leaving me alone, in a hospital, with a sleeping baby, no book, and about a dozen dog-eared magazines. If that's not bad enough no cell phones are allowed on the floor; and the cafeteria, the only other place I venture out to, is one big dead-zone. Oh, and for some reason, I can't even access the Comcast home page to log-on to my e-mail. So, my word of advice for those of you who have a child undergoing surgery...bring lots of reading material, crosswords, and whatever else excites you. One thing most parents don't even consider is how much down time you'll have during a week or two stay at a hospital-never mind a six week stay which is not all together uncommon for some of these heart kids.

However, the bigger picture is I can stop complaining about my boredom and relish the fact that Luna is doing spectacularly well. The rumor is she might be discharged TOMORROW as in the Sunday after her surgery she had on Wednesday(!!) Today she had her X-Ray which passed with flying colors. From there the nurses took out her pacing wire and then removed the dressing over her heart. After that bout of excitement she had to be put on the monitors for the rest of the afternoon. Her vitals remained the same solid numbers we've seen all along. Meanwhile the hospital tedium was interrupted by a visit from Daddy and Big Sister. Sienna came crashing into Luna's hospital room and wasted no time making herself at home. Luna's balloon, stuffed animals and books that had been bestowed upon her by generous friends now belonged to Sienna. And it only took a moment before our cramped quarters were converted in to a full day-care unit. (for this part of the story to make sense it helps the reader to understand that Sienna runs an at-home daycare. This consists of rotating her 1/2 dozen or so baby dolls in and out of Luna's equipment. Unfortunately, for Sienna the babies are not all on the same schedule so they are fed, burped, diapered and put to bed or into the swing, Bumbo or highchair though out the day, every day).

Finally, in a desperate plea to let Luna (and Daddy) sleep, we left the babies behind and I took Sienna into the hospital playroom. I gazed out of the vast floor to ceiling windows down at the rain-soaked city below while Sienna and a brother-sister duo played. They played nicely, all sharing each others toys. At one point during the afternoon, I heard the older sister say to Sienna as she stuffed a fist full of fake dollars into the toy cart heaped with naked dolls she was pushing, "here is some money, go out and get something nice for your babies."

Around 4pm Sienna and Daddy braced the torrential rain storm to make the drive home. Luna ate solids (applesauce) for the first time since before the surgery, then went to sleep where she's been ever since.

Friday, September 26, 2008

I guess I can log-on afterall

Okay, well I'm here again. Last time we were in I couldn't pull-up this site. I'm happy to report I'm in the play room on the public computer in the step down unit and Little Luna is here next to me in a stroller (yes, a stroller, not hooked-up to anything, like I could wheel her out the rotating main door if I wanted to be reckless).
Her mood has improved drastically and I promise, her face is back to normal. She still has those silly round band-aids on her chubby cheeks-only because no nurse has volunteered to tear them off. This afternoon after two straight days in a hospital crib and starring at cartoons Luna started to seem, not sick, but bored. She was grunting and fussy and listless so a nurse I've never seen before came to rescue and brought in a stroller. We disconnected Lu from all the monitors (yes, every single one!) and carefully placed her in the carriage. I walked her around the ICU floor for two hours. Let me tell you, what a difference did that make! She perked-up immediately, and was back cooing, smiling and engaging anyone who would look her way with her bright, big eyes. She's so happy in fact that I have yet to take her out and place her in her crib. Dr. Brown came to take a listen-said she sounded great-and strode away with not a word about putting her on the monitors. She is only TWO DAYS POST OPEN HEART SURGERY!! Can you say Superbaby?

Move over Luna, Mama's coming in!

This morning Paul and I check-out of the hotel. For the next however many nights till Luna comes home I'll be sleeping on the 'sofa-bed' (more like an oversized chair that pulls out) in Luna's room. Paul will go home to relieve his mom of Sienna. Then the two of them will come back in and visit us tomorrow and Sunday. Due to the HIPPA privacy laws I won't be posting until we're home. (Blogs, along with Facebook, are considered social networking sites and they're blocked on the hospital PCs). Good thing there's lots going on in the news, I'm going to have a lot of down time while Luna sleeps!

Thanks so much for all your messages of your really means a lot to us. Bye for now~

Thursday, September 25, 2008

The Day After

It was another long day at the hospital. Because there were no beds available in the step-down unit (aka regular cardiac wing where the kids go when they leave intensive care) Luna stayed in the CICU. It was just as well. Though she is doing perfectly well, actually well ahead of the curve, she was really uncomfortable. Her mood/attitude was somewhere between stoic and resentful. We didn't see a smile out of her all day. Of course, how can we blame her. And she seemed almost angry with me. She wouldn't look at me. She starred at the TV-all. day. long. Health-wise she's in excellent shape. Her sats were rising nicely all day. When we got there in the morning she was in the low seventies, and by the time we left she was in the eighties. She did have the help of a little oxygen-the kind of devise that has two tubes that goes up into your nostrils. She spent much of the day scratching and pulling at it. Luna did what she needed to do in order to prove she was fast-tracking it outta the ICU which consited of eating (tons, 5 bottles in the time we were there and poop (it's a big deal after surgery that your bowels work-poor Lu-she'll read this in as an adult and be mortified). Little by little wires and leads are being taken off of her. For meds she's taking an antibiotic for the drain tube that protrudes from her heart. This is by far the ickiest 'thing', it's a drain bulb that pulls excess blood off her heart. It'll come out tomorrow morning-and will be the last bout of big pain she should endure. Otherwise she's on lasix to pull the excess fluid off her lungs, Tylenol, and morphine as needed. Tonight everything will be pulled from her except for an IV (so they can administer meds as needed), so she'll be almost line-free when she arrives to her new hospital digs tomorrow am. The doctors are predicting she'll be discharged sometime Monday. Fingers crossed. Mama would do anything to be in her own bed watching TV with both girls right now.


We just woke-up and called the ICU. Luna had the breathing tube pulled out at 1am along with the line to her neck. She took 4 ounces of Pedialyte by bottle. And the best thing...the nurse said Luna most likely will be booted from the ICU later today!!! WHOOOOWEEEE!!!!
Paul and I are heading over shortly...stay tuned!

Wednesday, September 24, 2008

The Glenn went smoothly

The title pretty much says it all. The first part of the day was exactly like yesterday-only this time Sienna stayed home. Paul, Luna and I arrived at the hospital at 7:30 sharp. Luna was whisked into a holding room where she was given an i.d anklet and the same happy juice as yesterday. Two anesthesiologists and the OR nurse greeted us in the pre-op holding room and had us sign consents. One of the consents was for yet another study that we've included Lu in. This one is to measure the velocity of the blood flow from her superior vena cava into her brain pre-Glenn with BT shunt then post-Glenn without shunt. The photos you see here...all that fancy tape on her forehead...that would be part of the study and actually is some type of ultrasound. The lead anesthesiologist is heading-up the study and it's to be published sometime next year. (did I mention this now is Luna's fifth research study and she's earned exactly $200 for her participation? She's a big deal in medical circles).

So, back to this morning. Once Luna was loopy from the sedative they wrapped her in a warmed blanket and carried her away. There is no stranger feeling having your baby taken away for open heart surgery. I literally felt empty-handed.

Paul and I did our best to eat-up the seven hours it took before we saw her again. By the end of the duration we were watching As the World Turns (not only were many of the same actors still on from almost 30 years ago when I would watch with my mom, but I was caught-up on the plot in about two commercial breaks). Finally, at 3:30 Paul and I were called from our soap opera stupor and into the NICU room where Luna was recovering. Her surgery was completely uneventful-yet wonderfully successful. She was stabilized, her blood pressure was a bit high, but nothing over the top. The surgeon patched her LPA, the one that was all kinked. It should, we hope, will be fine, but time will tell on that one (arteries, as we all know can kink and narrow over time, in fact it takes good blood flow (among other things) to keep them open and unrestricted).

The plan ahead is to extubate her tonight around 10pm. Frankly, I'm terrified to see that. Luna needs to be only mildly medicated in order to breath. Which means she will feel the tube coming out. But of course this just will mean she's one step closer to coming home.

Finally, here are some photos. Maybe we're becoming immune, but both Paul and I agreed she doesn't look at bad as last time. I can still see her pouty lips and long lashes, and to me she is beautiful.

Tuesday, September 23, 2008

MRI & Echo, done!

It was another relatively easy day for all of us. The four of us trucked into Boston at the crack of dawn and were sitting in the MRI waiting room at exactly 7:30am. We checked in and then waited an hour for a nurse to come get us. I have to tell you...I would say the single worse part of all of this hospital stuff is the wait. Children's Hospital is probably the mecca of medical talent, and you can see it in the multitude of nationalities represented in the patients and their families, but the trade-off is you wait, and wait and wait some more to talk to the doctors. In the case of this mornings wait, the doctors somehow were not informed that we were in the waiting room. Oh well. Least of our problems.

I brought Luna in, and Sienna and Daddy stayed in the waiting room. Once in the patient room I was 'debriefed' on the day ahead. Luna was to be first given an oral sedative to make her drowsy and then they would strap-on the oxygen mask and enter the lines into her veins. Foolish Mama, but I only today realized why they had to completely knock Luna out. This was so they could control her breathing during her MRI, and most importantly, artificially stop her breathing in order to blast off several rounds of photos of her lungs. Since her lungs are such a big deal in the surgery, and her heart condition in general, they needed to be recorded completely and totally still. This hit me like a ton of bricks at 8am, but the nurses all seemed like, 'sure, we stop her breathing and snap off her photos, no big deal'. Like this is something I used to require of couples when I shot weddings. Seriously, that's how calm they were about it. This gave a whole new meaning to 'hold still for the camera'. So, after that nugget of news, they proceeded to give Luna the oral sedative. This had to be the cutest part of the entire day. Hopefully you've never seen a baby drunk, and certainly it's no laughing matter, but under the circumstances I think it's good to find laughs in between all the scary stuff. After just one dose of the pink liquid, Luna immediately started swaying. She sits up now. (Well, almost. Someone needs to be right near her in case she topples over). Well Little Lu sucked back that medicine and she immediately started swaying, giggling and blowing raspberries. I mean, this would have been a winner on AFV, seriously. She continued on in this drunken manner until her eyes drooped shut and her body finally caved to the 'happy juice'. It was adorable. I thought to myself what a perfect way to be whisked away from Mama. (and how could I get my hands on some during tomorrow's surgery).

Once Luna was wheeled away, the three of us had exactly three hours to kill. Park, TV and lunch and we were back. When I returned to the room Luna was sitting up in the hospital crib wearing her johnny, watching TV and looking strangely adult-like. Once she saw me I was greeted by a huge smile. She looked puffy, and still had some lines in her, but otherwise she was great. In fact, the doctors were telling me as she started to come-to during the echo she awoke happy; cooing and gnawing on her oxygen mask. I'm not kidding about this, either! When I saw this child is chill...I mean it!

The end of the day was comprised of waiting and waiting and waiting some more. Luna nursed and fussed out a bit but then fell asleep. Sienna by now was pretty much losing it (been up since 5am, it was 3pm-no nap, you get the picture), so the nurses brought her up to the nurses station and let her 'answer phones'. I can just imagine that phone call...

Finally Dr. Brown came in and said the photos looked great. Her left pulmonary artery is pretty kinked, so they'll fix that, along with removing her shunt and performing the Glenn (bringing down the Superior vena cava vein and tying it into her pulmonary artery).

We got home around 5pm and the girls played as usual. Just another day. Tomorrow Sienna will stay behind with her Grandmother and the three of us report to the hospital for an 8:15am surgery.

Monday, September 22, 2008

The Glenn is upon us.

I can't believe it, but we're here. Today was pre-op, and honestly, it was a breeze. Maybe I'm just getting used to hospitals and all the tests, but seriously it was e-z. Mama is pretty tired and I have a fresh baked apple pie waiting for me in the kitchen (that Memere made today. She even etched L.V with a heart in the crust, I mean, seriously, how sweet??)

This morning Paul, Luna and I all hit the road at 6:15am for a 7:30 arrival at Children's. Naturally we hit traffic so we were an hour late. But it was fine. The day consisted of an EKG, blood work, then a weight, height, sats, and blood pressure check. Luna continues to grow well (as I said before this babe can eat, eat, eat!!)

Her vitals were perfect. Strangely her sats have improved, despite the fact that she has more than doubled her weight and almost her height. I say strange because as the babies grow, they begin to outgrow their temporary shunts. For whatever reason her sats range from 86 all the way up to 93 (!!).
Her weight is 15.5 lb and she grew a whopping three and half inches since our 4 month appointment. She was born at 19 inches, then she hung out at about 23 inches, and now she is 26.3 inches!!

Along her getting her vitals we talked with her card, and anesthesiologist and several nurses.

The rest of the week goes like this:

Tomorrow: 7:30 am arrival for anesthesia so she may have her MRI and echo. I was a little bummed to find out that rather than ingesting the oral sedation she had for her last sedated echo, Luna will actually be put under general anaesthesia. Yuck. This of course requires her to 'come to' in a recovery room. All for good cause, that is to keep her totally and completely still for the MRI so the doctors may see all organs before she goes in for surgery.

Wednesday: 7.30 am arrival for surgery. We're in the first slot, which is good, less waiting around.

Tomorrow Sienna is joining us, so the four of us will go in together. The hardest part is Luna can't eat after 1:30 tonight. And as I said, this baby can eat.

That's all for now...think happy thoughts for us!

Monday, September 15, 2008

"My Bama"

With the election less than two months away it's hard for anyone to ignore the all-out media circus going on between the candidates. This includes my 2 1/2 year old as well.

Our morning ritual is this: Paul is up and out of bed at the crack of dawn. I sleep in ('sleep in' being used lightly, as in till maybe 7am) until Sienna wakes me up. And this is the dialog that I am awoken to. Every morning. Seven days a week.


By now I'm rustled slowly from a dream and begin to realize that Sienna is not calling me from across a vast, grassy field; but in fact she is in the very next room and wants out from her crib.

Then a loud thud. And I know from past experience Elephant has been hurled across her room.

"MAAMMAAAAAHHHHHHH I need a diaper change!"
Yes, you would think that when a toddler tells you she needs a diaper change that it's time for the same toddler to lose the Pampers and hit the potty. Not this toddler. I'm pretty sure she'll be wearing her diaper well into the winter. And yes, she does turn three this February.

Finally I stumble into her room and pull Sienna up out of the crib, peel Elephant from off the floor, and change her diaper (Sienna's, not the Elephant's). I deposit Sienna onto my bed, then it's off to get her milk and on the re-bound retrieve her sister. Luna is typically awake in her crib, yet laying still and quiet as a mouse. When I lean over to reach for her, she gives me a big toothless smile and pounds the matress with her chubby leggies.

The three of us flop into bed together, and if Sienna lets me, I put on Good Morning America. Lately the story is about Obama, wife Michelle, Biden, McCain or Palin. Each time Obama flashes on the screen I say to Sienna, "that is Obama. He is running for president and Mommy and Daddy are voting for him"

So, this morning was no different. Us girls laid in bed, and each time Obama appeared on the screen, I would say, "That's Obama". and Sienna, in perfect two-year-old spirit, would fire back, "No, MY BAMA!".

Friday, September 5, 2008

Update on Luna

I know. It's been almost a month since I posted. What happened was Luna was scheduled to have her Glenn in August. Then, because the surgeons at Children's couldn't accommodate her (I think the Big Guns were on a much deserved summer vacation), and because she is doing so well, her surgery was pushed back to September 24th. I had mentally prepared myself for being on the other side of this by now, so when she was pushed back I took a break from heart stuff. Luna hadn't had a single doctor's visit in six weeks so, really, it was nice to enjoy the entire summer with a our new baby. Just yesterday was her first visit to the card in weeks. Here is the lowdown:

Just shy of 6 months old, Luna weighs exactly 15.2 lb and is smack-dab in the 50% percentile! This is ah-mazing. I was in the 50% percentile at her age (hurrah for Mom for keeping such good records), and I'm not even a special heart baby! Truly, this is no small feat for Miss Lu.

In regards to the last statement regarding Luna's weight. SHE-EATS-ALL-THE-TIME!!! For real. This kid can eat. I'm still nursing her. In addition she typically has about 8 oz. of formula/day, two servings of rice cereal, then any combination of peas, bananas, prunes, sweet potato, carrots and I'm sure I'm missing a few. Luna is a big eater...just like her Mama.

Her surgery is September 24th. My friend Sarah told me 24 is her lucky number, so I'm going with that. Pre-op is Monday the 22nd. And the 23rd Luna will undergo a MRI on Tuesday so the docs can check out all her organs before they go into surgery.

Yesterday at her appointment she had an echo. The doctors also checked her pulse, blood pressure, sats, and weight. Her sats are still hanging right at 85 which is perfect and where they've been since birth. All other vitals were perfect too. The three of us; Sienna, Luna and me all went together. Sienna had a blast. Cindy, the echo specialist played Happy Feet on a big screen TV while Luna was stretched out on the bed for her echo. The lights were dimmed (really to see the echo, but as far as Sienna was concerned it was just like the movie theatre) and lolly pops were passed around. Luna conveniently fell asleep so Cindy was able to talk me through what I was seeing on the monitor. She explained to me what the grainy black and white images meant on the screen. She showed me how Luna's LPA (left pulmonary artery) is looking real good-despite the narrowing. Both arteries show 'turbulent flow'. The very word 'turbulent' sent a spike of fear through me, since naturally all I can think of is being jostled around an airplane at 3000 feet-and as my husband knows from flying with me-is my single biggest fear. In Luna's case her shunt is blasting the blood into her arteries artificially, much like an overflowing funnel. Cindy, the echo 'reader' (and wow is that an art, seriously I often can't make heads or tails of what I'm seeing) explained to me Luna's blood flow is more 'aortic rather than pulmonaritc'. So, in Luna's case, too much push and not enough pull. The Glenn will correct that, and make it so her flow is much like yours and mine.

While Luna's heart is malformed, or 'unique', the heart itself is never touched during the surgeries. Instead it's all about rerouting blood flow and working on normalizing and stabilizing her circulatory system. So, really we can think of Luna as undergoing a sophisticated form of plumbing. Only the pipes are of the human variety.

Thursday, August 7, 2008

$42, 944.32

I'm just now cleaning my office. It's been a while and it's trashed. I guess I take after my dad in that respect. There are just so many better things to do than organize paperwork.

In going through piles and piles of unopened mail I found one envelope with Boston's Children's Hospital listed as the return address. It dates back to June 29, 2008 and states:

Account #XXXXXXX
Account balance: $42, 944.32

This is to inform you that a claim for the below referenced patient has been submitted to your insurance and as of this date, we have yet to receive payment, or a response to the claim. In attempt to resolve issues related to the delay, your assistance is requested in contacting the member services department of your insurer.

Luna Ruth
Service dates: 04/27/08-04/29/08

Patient Financial Services,
Children's Hospital Boston

Um. Okay.

I checked my calendar and sure enough the dates correlate with Luna's balloon cath. She was in the hospital for a total of two nights. And received blood work, X-Rays, lung scan, anaesthesia, and of course the balloon cath.

Since we never received another notice (though I do still have a mountain of discarded mail sitting on my desk) I assume this was resolved. It seems so long ago. Paul was at a different job at the time. We no longer carry the insurance referenced. I suppose at some point some clerk at Blue Cross ponied-up the 43K. But I wonder if unbeknownst to us, there was a moment, much like the Michael Moore film SICKO where some worker-bee was instructed by her higher-up to toss the bill to the side for a few good billing cycles.

One wonders.

Sunday, July 27, 2008

A Day in the Life of Lu.

I thought it would be important to write about the regular hour-to-hour routine of Lu. Much to Mama's delight, she started sleeping through the night at 4 months. She typically wakes to eat around 5.30am. Luna has a sweet disposition and she is no different when she first wakes. Rather than crying loudly, she instead sort of grunts. I can hear her from our room sucking on her hand and cooing. When I enter her room I'm greeted by her smiling face looking up at me in the inky, predawn light. As soon as she sees me, she starts smiling, snorting and kicking her feet in excitement. I have never been a morning person, in fact, I could be the one counted on for waking last, but thinking of Luna's toothless grin is enough to pull me out of bed at dawn.

After I nurse her I put her back into her crib, where she sometimes sleeps till close till 9am. This gives me plenty of time to tend to Sienna, which typically means filling her sippy cup at least three times with soy milk, looking for her elephant and blankie at least 2 times, and serving 2 breakfasts (one early bowl of cereal and then a mid-morning waffle or english muffin served with lots of fruit) all while the voices of Elmo, Bert and Ernie chirp from the television.

When Luna wakes for the second time in the morning she is just as happy as she was the first time around. By this time Mama has had her fill on coffee and greets Luna just like this, "Gooooood morning LU!" Luna in return kicks her chubby legs and flaps her arms and smiles and coos. After a diaper change I give her .5 ccs of Lasix, which I suspect she no longer needs. She's on a tiny dose to begin with, and all her doctors have been on the fence whether she even needs it. One nurse at Children's told me if I see less and less wet diapers then that's my signal to take her off the diuretic. Just last night, it finally occurred to me, for the amount I nurse her, she really doesn't have soaked-wet diapers. When I gently pulled her out of her swing after a four hour snooze and changed her diaper, I discovered it was bone dry. I decided this was my cue that she doesn't need the med. I'll confirm this with her doctor this week.

Our days are hectic and busy, but fun and filled with the kind of stuff that makes for good childhood memories. Our big decision for the day is will we go to the pool or the beach? If we've decided beach, then we have another tough decision, which beach? If we have no appointments we make the trip to Marblehead where we meet Grandpa at Devereux Beach. Both days we've gone the temperature has soared into the 90's. One such day I cringed on the beach, imagining what Luna's cardiologist would say if I bumped into her (or him, she has two). But Luna slept or rested in the stroller under the canopy. I soaked one of Sienna's t-shirt in the ocean and draped her over her legs and Grandpa and I made sure she was cool and comfortable through out the day. Occasionally I would bring her down to the water to dip her leggies in the choppy salt spray. I was even able to jump into the ocean myself, while Grandpa stayed beach side with the girls. The waves were bigger than I ever remembered and I bobbed and dove into them just as I did as a teenager. The thrill of the immense wave rolling toward me and then the rush of surviving the gigantic roll is still the same, and still one of my favorite things.

Lu's evenings consist of feeding, napping, feeding, playing, feeding and watching Sienna's every move. Then she feeds yet again, fusses for a few and finally dozes off to sleep. Oh, and I give her 1/2 dose baby aspirin. She seems to be right on with her milestones. This past week she started rolling from her back to her belly-where she gets stuck and frustrated-which is exactly what Sienna did at her age. She babbles, smiles, stares intensely and deeply with her slate-blue marble-like eyes and more recently started laughing. Hers is more a guffaw than a giggle and is irresistibly cute.

So, there you have it...the day in the life. Next week we'll start solids. Mama can't keep up with this little chunker, who is has successfully doubled her birth weight, weighing in at exactly 14 lbs. August will bring it's challenges, but we've enjoyed our summertime and with an wink of an eye, humid, anxious August will give way to crisp, serene September.

Saturday, July 5, 2008

(Stormy) July is ours to enjoy!

Can I tell you how good it feels to have the sedated echo behind us? It went well. Really well. The most difficult part of the entire day was that I couldn't feed Luna for several hours before the procedure. This is because she needed an empty stomach so she could tolerate the hydrochloride. Pepere came along for the ride and kept Luna company in the back seat while I drove. She fussed out for maybe five minutes, but Pepere was able to calm her by coaxing her with a water-filled bottle. An aside: Luna won't take a bottle. Sienna wouldn't either and I promised myself I would work harder at it this time around, but here I am in the same situation again. ~sigh~ But this time it turned out for the best because unbeknownst to me, Luna wasn't allowed to have even water before the procedure. The other difficult part of the day was the oral sedative given to these babies tastes awful. I realized they weren't kidding when I changed her diaper later in the day and was accosted by a foul stench. Watching Luna struggle against two nurses as they squirted the rust colored liquid down her throat was painful. But from the time they administered the sedative to the time she conked out was about 4 minutes. So really, how bad is that?

The balloon cath worked better than even the doctors predicted. (Dr. Brown actually gave me the footage of her cath. I plan on posting it soon so you can enjoy watching the tiny balloon snake it's way up Luna's tiny veins, through her shunt and into her left pulmonary artery where it stops to inflate several times). Just to recap: Luna's left pulmonary artery had significantly narrowed, most likely from a snag that occurred when her shunt was installed at 3 days old. Luna has two cardiologists (how lucky is she that she not only has one brilliant doctor, but two!), and they both agreed that she would have to have the balloon cath procedure twice before the Glenn. But guess what, she fooled them! What happened is once the blood was able to move more freely though the artery, much like a river, it grew wider as the flow increased. I was fairly confident this was the case before last Tuesday's appointment because the sats I'm getting on her are often in the low 90's (!!). Indeed this was confirmed at her appointment where her sats averaged 87. The result of all this? This stormy July is ours to enjoy. Luna will go for a MRI and her Glenn in mid-August. Sure, you might think that's just around the corner, but one thing I've learned having a special heart baby is time is finite. And never has Buddhist-inspired phrase 'live in the moment' been so true.

It seems that every day there has been a dramatic thunder storm. Sienna talks about them in great hyperbole on a regular basis. Today, as we were driving back from the Farmer's Market the sky deepened several shades of gray. I noted aloud that another storm must be coming in. Sienna, from the back seat started a dialog that went like this:

The storm is coming. A storm is coming. Mommy the storm is coming. Mommy, do you see it. Mommy the storm is coming NOW. Mommy, do you hear it? I hear the storm coming. It's coming right NOW. The storm is coming I hear it on the roof and it is raining right NOW. Mommy, the storm is HERE NOW and it is raining on my head. Oh, it's raining on Elephant's head too. Mommy, the storm is a coming! Oh it's raining SO hard on my head!

The funny part about Sienna's diatribe is it wasn't raining. And you couldn't hear the thunder. As you looked down Route 1, you could see the sky had darkened, but that was it. She continued on in hushed tones that I couldn't quite decipher, but through the bits and pieces I could hear she was consoling her pink stuffed Elephant who was clearly concerned about the coming storm. By the time I pulled into the driveway the sky had opened up to full sun again, and Sienna, Luna and Elephant were fast asleep in the back seat.

Luna 4 months and chunky!
Luna in her crib weighing just about 13 lbs at 4 months and looking positively chubby! Check out those Michelin tire arms!

Saturday, June 21, 2008

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".

Sunday, June 1, 2008

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.

Friday, May 16, 2008

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 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.

Thursday, April 24, 2008

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!

"brand new"

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

Tuesday, April 15, 2008

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. it takes a degree to get a baby to smile these days. That must be it!

Sunday, April 6, 2008

Just because this is so hilarious...

...this was the scene at our house yesterday evening. This was not posed. Well, OK, Luna didn't exactly walk over and plop into her little infant seat-but the bunny and cat did arrive to this pose on their own.
For those of you who know the Stoucy, our cat, you realize how unlikely this sight is. Stoucy is, in a word, psycho. The only people who like her are Paul and my Dad-go figure. (I sense there is a joke there, but I'll let it be).

The rest of us can't stand her. The last time we weighed her she was close to 30lb. She weighs more than my 2 year old. She also thinks she's a German Shepard. As my friend Janelle can attest to, she once chased her around the house. It was truly frightening. I hadn't the time to warn Janelle one visit before she went over to pet and coo with the 'nice kitty'. Stoucy pounced. But she didn't stop-she chased Janelle up and down the hallway and around the living room-Janelle had to jump on the couch to escape-and Stoucy, who is too fat and too lazy-gave up and walked away. Even Sienna yells at her-something I'm to blame for, and feel a tinge of guilt-every time I hear Sienna scold, "Stoucy, No!". This command is hollered often when Stoucy is sitting cleaning her paws-completely minding her own business.

The poor bunny is another story. One freezing night, Paul convinced me to join him in a ride to some God-forsaken place called Mechanic Falls, Maine so we could check out a lop breeder. He thought Sienna would like a bunny for Christmas. Turns out, Sienna is like me, bunnies bore her. A few days after we brought the tiny furball home the novelty had worn off and no one could even be bothered with naming the poor thing, so we all call her 'Bunn'.

So, I guess it's nice to see that Stoucy and Bunn have bonded. At least we can feel good knowing that if no one else seems to like them, they have each other.

Friday, April 4, 2008

"Luna is our Little Star"

That's what her cardiologist told us while at our appointment on Monday. Paul, Luna and I trekked into Boston for her routine follow-up. It was different-mostly because I'm so used to being on the prenatal side of things-I wasn't prepared for all the children!
The appointment began with a weigh-in. Luna impressed us all with a weight of 7lb 14 1/2oz. Less than a week earlier she weighed 7lb 5oz. This is with me exclusively breast feeding or 'EBF' as we say in cyberspace. Both Luna's cardiologist and pediatrician agreed that we needn't implement with formula bottles due to her consistent weight gain. I was thrilled but not surprised because if anyone remembers Sienna when she was an infant she was a lil' porker! It was not until I stopped EBF that she started to level off with her weight. For the first 7 months or so she was always in the 95th percentile. Not until we introduced table foods and then she endured a few good rounds of stomach flu did she drop to the 50th percentile for weight-where she's remained ever since.
Luna's appointment continued on with an EKG-and nope, the leads weren't placed on her body opposite of what they should be. I asked... The nurse replied it was a good question but because Luna has only a single ventricle there is no need to reverse the leads. Either way, Luna's read was perfect. After the nurse listened to her heart and lungs-again all clear there-we all headed downstairs for an XRay. Paul and I braced ourselves for the worst as we entered the darkened, lead-lined room. But Luna's amazed us again. When the technician pulled out the infant box and placed our baby inside, Little Luna raised her arms above her head just as she should have-without us having to force them against her will. She's laying the very same way now as I look down at her sleeping in her bassinet. (There's something about infant arms-with their lack of intent and floppy motions that remind me of Grover arms-something that I find so cute.).
After the XRay we met with Dr. Brown, Luna's cardiologist. He again marveled at her recovery and health, at one point saying, "I bet people who don't know her have no idea of her condition". Yep, that is the truth. She's an adorable, good natured, happy baby girl! We discussed her next surgery, which Dr. Brown said would be in about 4 months. This took me by surprise, but it's really a good thing. Since she's gaining on a good curve she most likely will outgrow her current shunt sooner rather than later-hence her next surgery will most likely happen closer to 4 months rather than the usual 6.
So, until then we'll have monthly cardiologist (card) visits up here in NH and we continue to monitor her sats. Once they start to consistently drop from the 80's into the 70's we'll know she's ready for the next step-the Glenn operation. Until then we look forward to enjoying the spring and summer!

Friday, March 28, 2008

Luna sails through first visit with the pediatrician.

Tuesday morning I packed up Luna and took her out for her very first visit to the pediatrician. It was my first time with this practice-who specialize in chronic illness (though I loathe that expression so I'll just refer to their clientele as 'special').

The doctor-who for now I'll call Dr. Goodnews-arrived in the examining room suited-up in a Hazmat outfit and bifocals that made his eyeballs appear the size of baseballs. OK, so I exaggerate on the Hazmat outfit, but he was wearing a sizable mask and gloves and those crazy coke bottle glasses. At least I know these docs are taking our 'special' kids seriously.

Dr. Goodnews had me undress Luna to her diaper and place her on the scale. She weighed in at 7.5lb. Before I could pull Luna off the tiny scale Dr. Goodnews burst out with tremendous excitement, "WOW, look at her! She looks fantastic!" Well, I'm biased, but I think she does too. He was taken aback by her pink skin (heart babies often look blue-also called cyanosis, due to poor blood circulation and low oxygen saturations). To be fair, Luna can occasionally look a bit blue-especially when she's screaming herself into oblivion-a blue ring forms around her mouth that one otherwise might not notice if you didn't know what to look for.

Dr. Goodnews continued on with his exam and listened to her heart and lungs and checked her eyes and ears-all checked out with flying colors. Then he lifted her just under the rib cage on both the right and left side-causing her to form a pretzel each time-which apparently was a good thing and showed she had good muscle tone.

The only downer was she conveniently pooped in the office so they were able to check her stool-and once again trace amounts of blood were found. Dr. Goodnews wasn't the least bit concerned and simply told me to eliminate all dairy and specifically to read all labels for casein and whey. Um, easier said than done...who knew dairy existed in EVERYTHING. More on Mama's battle with no dairy later-but for now let's just say if anyone knows where I can purchase a 'dairy-patch' please do tell. Soy icecream just doesn't compare to a Friendly's mint chocolate chip frappe-which I'll admit to sometimes eating 2 a day when pregnant with both girls (and I wonder why I gain 50lbs each pregnancy).

Our next appointment is Monday in Boston-a big follow-up. Will report back then. For now I must get back to Mister Rogers...he's touring Colonial Williamsburg where there's a parade and the band is playing Yankee Doodle Dandy. Sienna wants to see "more-some 'lins" (translates to 'More violins') and then have a parade of our own. Now, where did I put that slide whistle?!


Sienna sporting her own faux cyanosis brought on by copious amounts of blueberry jelly.

Tuesday, March 25, 2008

Now what?

I get that question a lot. "Now what will happen to Luna?" Well, from here she has two more surgeries: one between 6-12 months of life, and one between ages 2 and 3. The second surgery, which will for Luna be either late fall or winter, is called the Glen. During the Glen the surgeons will replace the shunt implanted during her first surgery with a bigger shunt, hopefully one that will grow with her through out life. Because babies are so tiny at birth-the first operation is considered a temporary fix. Almost all babies with similar heart conditions, Luna included, have a temporary shunt implaced-and the size of the shunt is almost always-and again in Luna's case as well, 3.5 mm. Yep, that tiny. I haven't taken a look at a ruler, but Paul assures me it's teeny.

Another common question I hear is: "will they move Luna's heart so it's in the right spot?" Egad-No! Medical science is amazing, but I would imagine that would be near impossible-but not only that, it's unnecessary. Dextrocardia, the name for Luna's condition that refers to the heart being a mirror image situated on the right side, is a benign condition. Unless it's paired with another condition called Dextrocardia Situs Inversus Totalis, where all the organs are flipped, dextrocardia in it's own right comes with no health risks. Sometimes, if dextro is undiagnosed, which is completely possible- and I bet there are a lot more of ya walking around with your heart on the right and you don't even know it!-it can be life threatening if one with the condition goes in for surgery for these reasons:
ECG leads must be placed in reversed positions on a person with Dextrocardia. In addition, when defibrillating someone with dextrocardia, the pads should be placed in reverse positions. That is, instead of upper right and lower left, pads should be placed upper left and lower right.

For now, caring for Luna is easy-she's exactly like any other newborn...she mostly sleeps, eats and poops! The only maintenance we have is twice a day, once at 8am and once at 8pm, Paul and I give her three meds. In the morning she gets half a baby aspirin-which for now is the only med we know she'll be on for life. In addition she takes Zantac-yep, the heartburn medicine. This is because after surgery, as I can attest to as well, the digestive tract slows considerably giving you terrible gas and heart burn. The final med is Lasix-this is a diuretic which is meant to pull the excess water from her lungs and blood vessels. The idea is to draw-out the excess weight off the blood cells so when it funnels through her heart, she doesn't have to work as much. Heart babies and adults literally burn lots of calories just sleeping and eating-how lucky are they??-with the help of Lasix they don't have to work quite as hard to pump blood.

So, that's a short lesson in the daily care for the Luna Bean. Easy, huh? Now we're off for our first appointment with the pediatrician...will report later with her check-up!

The visiting nurse getting Luna's weight which when this was taken last week was at 7.2lb

This photo shows the blood saturation and heart rate monitor. Twice a day we apply a sensor to her tiny foot so we can get a read on her 'sats'. Most of us have blood saturations in the high 90's. Little Luna is at the mid-80's-which is exactly where she should be post surgery. Not until the final surgery will we see her sats in the 90's.

Luna's night-time meds.

Sienna changing Froggie's and Elephant's diapers.

Sienna loves her sister. Today she asked if she could stay home with Mommy and baby Luna. (As soon as Mommy can lift you!)