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.