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!)

Thursday, March 20, 2008

We're Home!

Last night at exactly 6pm Paul, Luna and I arrived home. Sienna and Memere greeted us at the door. Sienna was nearly jumping off the walls with the excitement that her baby sister was finally home.

As predicted, yesterday was a long process. We were supposed to be discharged at noon but little Luna-apparently has a flair for the dramatic like her sister-decided she would keep us on our toes with a tiny scare. The previous night the nurse changed her diaper ( have one of those amazing nurses come home with me!) and exclaimed that her poop looked 'funny'. The word funny strung along with poop in a sentence usually doesn't mean anything humorous at all, but rather something very 'unfunny' and potentially even downright nefarious. In Luna's case the green in her poop meant blood. Who knew green poop somehow translated as red blood. So, starting at about 2am Wednesday morning every diaper was tested. Two diapers came back with trace amounts of blood. This can mean a whole litany of conditions ranging from blood ingested during breast feeding to a much graver condition where the body (I hope I get this right) over circulates and the baby develops something called NEC-an acronym for something I won't even pretend to understand on 4 hours sleep.

Along with testing Luna's diapers the nurses checked her little bum for a fissure (none there) and several doctors and nurses gave her belly exams. In the end the feeling was perhaps she has a milk allergy since the two suspect diapers were found after Luna ingested a breast milk bottle fortified with formula (which is made from cows milk). Little Luna apparently wants to be just like her sister. Since Sienna is lactose intolerant Luna decided she would be too.

In the end it was an easy fix-moving forward, the bottles we give with formula in order to fatten-up Little Luna-must be made with soy formula.

Since Luna was showing absolutely no signs of discomfort the doctors finally discharged us around 3pm.

Last night was our first night as a family of four and it felt wonderful to be reunited at last...even despite the fact that both our 'babies' had Paul and me up all night!

Sienna Playroom Childrens

Sienna in the playroom-just two doors down from Luna's room at Children's. As you can see this is vacation as far as Sienna is concerned!

Sienna Playroom Childrens

Sunday, March 16, 2008

What a Difference a Day Makes.

The lyrics to the old song played in my head all day as I marveled at Luna's recovery. Not yet even two full days out of open heart surgery and here she is drinking from a bottle and cooing with the best of 'em. The doctors stopped the breathing machine less than 24 hours out, but left the tubes in as a precaution because the standard quo for these babies is they need help breathing-typically for a good many days afterward.

And last night Luna was 'stepped down'-AKA booted from the cardiac ICU. I actually wasn't nervous leaving her for the night so we could get back to Miss Sienna.

Last night Paul and I got a blissful 8 hours of sleep in our own bed (when does that ever happen with a 5 day old?!) and this morning we packed the car and headed back into Boston with Sienna, Memere, Pepere, and Uncle Bill in tow. We arrived to see Luna in her new crib. Just as we entered the room the doctor began the procedure to remove her heart drain (during surgery a drain bulb is placed right underneath the heart to drain excess blood afterwards). A bit of Morphine was administered and the doctor with a nurses assistance pulled out the bulb. I'll admit, I couldn't watch. Luna wailed in pain-and the doctors will admit, it's not pleasant-but it's a 30 second procedure and even is the LAST procedure for a while!! Right now my only purpose in life is to get Little Luna to eat. Once she proves she can eat successfully she's outta the's that easy! (though I better knock wood...) Today she took an once here and there of milk, but because she was so sleepy they had to tube feed her. And I'm not going to blame her just yet...if I had just undergone open heart surgery I would be sleepy too!


Big Sister rockin' the phones at the Ho Jo's, our home for tonight. If you're wondering the conversation went like this:

Sienna: Hi Jasmine. Are you at Daycare? Okay! Bye-bye!

Friday, March 14, 2008

Post Op Day 1

Goddess of the Moon. That's what 'Uncle Tom' the anesthesiologist called Luna as the medical team wheeled her out to the OR. He called himself Uncle Tom because I had just asked what blood type she is (A positive, same as her Mama) and he replied that he too was an A positive so they must be related. As it turned out she did need some blood during and after surgery. This was alarming to me at first, but the team reassured me they are so tiny that losing a pint of blood is a much bigger deal for them than for us. (note to self: pay it forward, donate blood).

Paul and I waited by Luna's side anxiously awaiting her 2pm surgery time. An hour and a half later the medical crew of 10 entered her room scrubbed up and ready to proceed. The team consisted of three anesthesiologists, three surgeons, four cardiology attendings and fellows, and an OR nurse. The team briefed us on the timeline and details of the surgery which was to begin with administering the anesthesia, then continue with the surgery and then an hour of regulating her circulatory structure once the shunt has been inserted.

Uncle Tom was to be the liaison to Paul and me and he followed through with three phone calls to us while in surgery. One call to let us know she had successfully took to the anaesthesia (this took the longest of the entire procedure-it's tough to find veins when you weigh only 7lbs). Another call was made to us once the surgery had begun. And we received a final phone call from the head surgeon once the surgery was completed successfully. Luna went in at 3:30 and by 6:30 she was out and taken back to her room where she was regulated for the next 2 hours.

Paul and I were back in her room at 8:30pm and greeted by one of the surgeons who had operated on her. Nothing can prepare you for the first sight of her tiny body hooked up to four IVs, a breathing tube, blood drain, and blood line. I remember little of what was said during our first visit except for a kind nurse who brought over two boxes of Kleenex (they keep them locked up on the Cardiac ICU, and for good reason) and stuffed a handful of Hersey's mini chocolates into the pocket of my robe. (Note to self: next time someone is in distress remember to stuff chocolates into the distresee's pocket, it works wonders).

Paul and I went back to Luna's room first thing this morning. The doctors seemed almost giddy with her prognosis. Dr Brown, her cardiologist, walked into her room, looked at her stats and stated with complete amazement that babies usually have a much rougher time with the recovery. Not Luna. Her body took to the shunt fabulously. Her stats are exactly where they should be and she was even stirring and trying to open her eyes-showing again that she is fighting to pull herself up from underneath all her equipment. When we left her today for lunch the nurses were weaning her off the oxygen. The plan is to take her completely off the breathing tube by late this afternoon and start her on a bottle (!!). In a very short time, Little Luna will look and feel like the Moon Goddess she is.

Nurse Sara taking Luna's temp

Sara, the kindest nurse in the world taking Luna's temp

Thursday, March 13, 2008

Going into Surgery in two hours


If this post makes no sense it's because I finally caved and took an Oxycontin for pain. I'm mostly having gas my shoulders and back of all places (who knew air could get up there?) but with the nature of the c/s lots of air can get into places that it shouldn't be-and it hurts! But enough about me...Luna is about to go into surgery-she scheduled to go into the OR at 2pm.

She's doing great and the prognosis for a quick recovery is good b/c she seems to be on the strong and healthy end for a baby with her condition. And we can all feel good knowing they've brought in the Big Guns for her surgery...chief of cardiology along with 2 other top surgeons-so we're not messing around there.

Paul and I have been in discussion with doctors, Anesthesiologists-including the Director of Anesthesiology(another Big Gun here). As well as other doctors who have-with our consent-included her in all the latest studies for various research that will published (more on that one later). So, as you can see this baby is being cared for by the top medical team in The World. One of the nurses made sure to tell me that as tears streamed down myself last night while signing consent after consent form (and the language can be upsetting).

Now Paul and I are going to eat a quick bite and head over to see her before she goes in. Calling all power prayers to make her through this safe and sound.

Here are some photos from this of her room at Children's and where she'll be for the next 4-5 days. And one of her adorable little face and one of her body showing all her sensors.

Wednesday, March 12, 2008

Luna Ruth has arrived!

Luna was born yesterday, March 11th at 5:23pm weighing in at exactly 7lb and measuring 19inches.

The c/s was wonderfully uneventful. The only snag was we were scheduled for a 12.30 but due to the high number of emergencies we were bumped to 5pm.

The planned c/s was completely different from Sienna's-yesterday was as every bit calm as the birth with Sienna was chaotic.

For those of you who've experienced c-sections you know the surreal feeling of laying on the gurney...with a curtain so you can't see any of the action (thank God, Paul likes to torment me after the fact with the gruesome details which are too gross to even share here) and you feel a slight tugging on your ribs a a pressure on your stomach then a tiny cry bursts into the sterile room and you know they've successfully pulled the baby from the womb. There is nothing like that newborn cry...

The medical crew washed Luna down and brought her bundled up to my face so I could see her. She's a zen-baby, so peaceful. We were happy that she scored 8/8 on her apgars as well!

Immediately after birth she was taken to the NICU to be stabilized (though she was doing really well-this was not out of emergency but rather all part of the original plan). Paul got to spend time with her and then she was brought over to the Children 's Cardiac division where she's been ever since. She's doing fantastic. The doctors put her on something that I won't attempt to spell at the moment...a drug that regulates the blood flow from her heart into her lungs. A drug that basically is doing the job of the missing ventricle. I didn't get to see her till the morning-which was painful-waiting all that time. But we finally went over at about 6.30am so I could get to hold her for the first time. Paul is with her now.

Next on the agenda...we find out the results of her echo cardiogram and find out when her surgery will be...we've been told they actually may operate on her tomorrow!!!

Thanks everyone for your well wishes...update to follow tomorrow.


s & p

Saturday, March 8, 2008

Welcome to our new blog!

I've been thinking about creating this blog for months now. My friend and client Cathy recommended Sara of Sadie Olive Designs. She took my vision and designed a blog in just under 3 days! I rather love it. A little background about why we created this blog: In just three days (!!) I'll be delivering our second daughter. Our first, Sienna is 2. She's the sweetest little thing who right now happens to be in bed with a really bad cold-poor thing-we took her to get rain boots this morning and she laid down on the floor and tried to go 'night-night' right there in the middle of Hanna Anderssen.

So when Paul and I went in for the 20 week ultrasound the technician told us 'she couldn't get a good look at the heart'. I later learned that when doctors say that, it's code for, 'there's a problem with the heart'. It's probably the scariest thing you can hear when going in for the 'fun' u/s to learn the baby's sex. We were sent in to Children's one very long week later and our fears were confirmed: the baby girl I'm carrying has a series of heart defects.

Though we won't know the exact status of her heart till Tuesday afternoon after I deliver, or even Wednesday, we know for sure she has dextrocardia. It's actually a fascinating phenomenon where the heart is located on the right, instead of the left. In her case her heart is flipped - much like if you could see through your body as you look in the mirror-the heart would appear on the right-and be a mirror image of what it should be. Still more interesting, there are no health issues that come along with dextrocardia-people with this condition are special, instead of left-handed they are 'right-hearted'. She also has been diagnosed with DILV which stands for Double Inlet Left Ventricle. Most of us have two chambers: a right and a left, but our baby only has one-and the doctors are 99% sure it's the left, but due to the disorientating nature of dextro he can't be sure.

The baby-who I should mention already has a name-Luna Ruth. The deal is whoever guesses the right sex is given the privilege to name the baby. With both our daughters Paul has guessed the right sex at the u/s. So if you like the names, then give credit to my husband, and if you don't, well you can blame my husband! I am responsible for the middle names-Sienna Grace is named for my father's mother and Luna Ruth is named for my mother's mom. Both Grace and Ruth appear in the vintage photos you see here. Grace is the young woman with the 20's 'sweep' hair and enormous eyes. Ruth is the girl in the middle of the two guys wearing those fantastic 1920's bathing suits. I promised myself that I would write short posts to keep with good blogging etiquette. I'll just wrap up saying I'm SO happy that this is my last weekend pregnant. And of course even happier to meet Miss Luna Ruth!