Happy Halloween!

Our little sprout. Costume courtesy our great pal Kath in San Francisco.

please ignore the person holding Sprout.

Here’s Charlotte participating in her first Halloween Parade:

The excitement was too much for her, so she took nap on Daddy’s shoulder. Believe it or not, she was not the only sleeping peapod. Seriously. Marching with her were her pals Minnie Mouse (aka Gabriella), Mr. Zebra (aka Finn) and The Bee Brothers (Dillon & Nathan, who we unfortunately lost in the crowd.) There was trick-or-treating at the stores on Roscoe Street, but (much to Daddy’s chagrin) it was too crowded to even get near the candy. So, we went to Starbucks (shocked, arent’ you?) and went home where we were met by: A court jester (Marcus) and his twin fairy (Karolien), Spiderman (Max) and Princess Kiki; and a gorgeous 5 year old kitty (Riley). Seven Halloween kids, their parents and visiting Aunt Carol and Uncle Mark. It was quite fun at our house. Too fun to take pictures, sadly.

Tube is Back In

Weight check: 11 lbs. 13 oz.
If you’re not memorizing her weights, that’s only 3 oz. up since she was weighed on 10/14. Perhaps worse, it is exactly the same as Tuesday’s weight check (which I forgot to post).

What it means: Charlotte has been averaging only 0.25 ounce gain per day. Babies her age should be gaining 0.5 ounce/day.

What it really means: The tube goes back in. We now go back to being obsessed about the exact amount of nutrition Charlotte is taking in every day. We return to feeding sessions that can take as long as 1.5 hours, biting into to crucial developmental play time. We return to being consumed by her consumption, as it were. It’s a pretty terrible way to live. Worse, her beautiful cheeks will now be ravaged by the tape again.

I am, perhaps needless to say, devastated.

If you’re asking yourself “what can I do to help?”, I thank you for the sentiment.

What you can do is please don’t call or email to discuss, comment, or lament this right now. I just can’t. And, please refrain from any advice on enticing Charlotte with particular solid foods or waiting until she’s super hungry. And this is the part Philippe says I shouldn’t say, that I won’t be able to say it politely–if you think you’re the exception to the “please no phone calls or emails about this,” there are no exceptions. I really just can’t. Please understand. I’m sorry if this seems rude or ungrateful I don’t mean it that way.

You see, it’s just not about hunger. It’s not about whether she’ll eat. She’s generally a good eater. It seems to be about the amount of energy it takes her to eat. On Tuesday and Wednesday this week she ate more than she had ever eaten in one day. It made no sense that she hadn’t gained–so it has to be about energy in-energy out. Her cardiology consult is November 2. So, we wait and see.

We’re increasing her calories pre day and we’ll go to the pediatrician for a weight check on 11/1. Then we have our monthly cardiology follow up on 11/2, the first since the catheter procedure. We should know more by the end of the week.

Enjoy the latest pictures–the last tubeless ones for a while.

Could We Be On Our Way?

In the introduction to this blog I noted that this would be the story of Charlotte’s journey to regular kids’ life. Well, we may be on our way there…finally.

On Friday we checked Charlotte’s weight at the pediatrician. It held steady at 11 lbs. 10oz. No weight gain or loss since Tuesday. We were shocked because on Wednesday and Thursday little Miss Charlotte had eaten less than 75% of what she should have. Anyway, Dr. Salem, against all odds, told us to leave the tube out. She said that if on any subsequent day Charlotte didn’t get to her goal food volume, we should put it back in. Promising to do so, I left. Quickly, before she could change her mind.

Well, let’s just say that Charlotte seems to have taken Dr. Salem’s admonishment to “Eat, Charlotte” quite seriously. She’s been tossing back bottles like a little champion since Sunday. We’ve been inching her twice a day meds towards 7 a.m. so that we can give second doses at 7 p.m. to get her on the sleep schedule that she seems to naturally lean toward. (She’s been out like a light since 8:20 p.m. this evening.)

We’re not optimistic enough to call OptionCare to pick up the pump. Not quite yet. But, our kiddo is making us proud. It’s finally fun to feed her. Most of the time. And, best of all, her little cheeks are nearly completely healed–she has a lovely baby complextion. At last.

Up 2 Ounces :)

Today’s update: 11 lbs. 10 oz. For those of you who haven’t been memorizing the statistics, Charlotte has gained 2 ounces since Saturday. I jumped for joy. After telling me to come back on Friday for another weight check, Dr. Newport gave me a high five.

Here’s a little photo gallery of Charlotte, tubeless and with cheeks on the mend. (Some of the photos are a bit out of focus; we’re still getting a hang of close ups with the digital camera.) Daddy has been taking a lot of pictures, but not posing. I’ll try to fix that next time.

How I Am, From A to Z, On Charlotte’s 5 Month Birthday

Charlotte is 5 months old today. I can hardly believe that much time has gone by. Yet so often the time has ticked by so darn slowly.

Last week a friend commented on the blog, how upbeat we seem, how informed we are, and how steadfast we remain in maintaining our sense of humor. I responded, “What choice do we have?” Trudy said, “Yes. But, how are you and Philippe doing? Really?” A lot of you have been asking the same question and we’ve done a good job deflecting your concerns up until now. But, the dam might break soon, so here’s the update you’ve all been asking for. Two caveats: First, I can’t speak for Philippe and wouldn’t even try. Second, the following may not be pretty.

How do I feel?
Angry that our little girl and we have to go through this. As Rabbi Greenberg said on Rosh Hashanah, nothing happens for a reason. There is no reason for this. It’s simply not fair (imagine me screaming that like a toddler). I feel like I’m angry all the time—I want to throw things and slam doors. But that really wouldn’t help anything so I focus on the tasks at hand each day.

Blessed to have such a beautiful, sweet little angel-baby. Charlotte has the loveliest disposition and a gorgeous smile. How could I not feel blessed when she smiles up at me first thing in the morning? And even more blessed to have the most incredible partner a girl could ask for. This is the family I was meant to have, despite our rough beginning.

Calm, from time to time 🙂

Determined to do what is best for my daughter.

Envious of people who have healthy babies, especially when I see them taking that for granted. Endlessly envious since I spent my pregnancy being envious of pregnant women whose Level II ultrasounds came back with no problems. Envy is not pretty and it is one emotion I really hate having.

Frustrated and frightened. Need I say more?

Grateful for our team of doctors, our friends, our family and our clergy. Grateful for more blessings than I can count, really.

Hopeful that Charlotte will be able to lead a long, full life.

Impatient to experience normal childhood milestones, to get through this very long recovery period, to have no more new diagnoses or issues.

Joyous when Charlotte giggles, plays, squeals, and drools.

Lucky to have good insurance and to be within driving distance of Children’s Memorial Hospital.

More in love with my husband all the time (when I don’t want to scream at him). Lots of people have told us how normal it is to alternately want to wring each other’s neck and to feel closer all the time in the first year of any baby’s life. I think Philippe and I have felt the pendulum swing both ways. Ultimately, however, we’ve been able to talk about everything and I feel that we understand each other better than we ever have. (That doesn’t mean I don’t want to slam the door in his face sometimes, just that he knows I feel that way and likes me anyway.)

Nervous about Charlotte’s future, her follow-up surgeries, her prognosis. Truncus arteriosus is a fairly rare heart defect and the repair is rather new (40 years, more or less). We really don’t know how long a life span our darling can expect or what physical limitations she might have. Clearly, she won’t be an elite athlete (was that ever in her future?!), but will she be able to ski?

Overwhelmed. I’ll let you all use your imagination—start with a medication schedule, doctors’ appointments, feeding logs, keeping house, and trying to have a life as well.

Powerless. There is nothing worse than not being able to fix what is wrong with your child. I’ve never considered myself a control freak, but right now I feel completely out-of-control, maybe “without control” is a better way to phrase it. Being at the mercy of Charlotte’s condition makes me want to scream sometimes.

Restless. My yoga practice has suffered enormously. I get to one class a week, but have not been able to reestablish a home practice or to get back to the gym regularly. With flu season coming on, there’s a good chance we can’t take Charlotte to the gym daycare until spring, so my yoga practice likely won’t improve until then. Given that yoga is the main thing that helps me stay calm and centered, I’m imagining a very long winter.

Surrounded by the love our friends and family. I take comfort in my mother-in-law and father-in-law’s phone calls—though they have not yet met their granddaughter, their concern embraces her from across the ocean. My mother, siblings, nieces and cousins have been a source of strength to us. And the outpouring of support from our friends continues to take my breath away. Charlotte will grow up knowing what an incredible community she has entered. Your thoughts and prayers give her such strength. As Valerie Slotnik would tell us, Charlotte is lucky to have been born into this family, and to have all of you in her life.

Tired. Tired like a toddler who cries for no reason just because she’s tired. I do that a lot. It makes Philippe crazy.

Very blessed, grateful, privileged and lucky. In the PICU we’ve seen parents who have to deal with so much more than we do. I really don’t know how they do it. I’m constantly inspired by my friend Debra’s sister Lauren. Lauren and Richard’s twins were born very early, ten years ago. The girls are medically complex, to say the least, but their mother makes sure they lead as regular a life as possible (including sleep-away camp). Lauren has been my hero for a decade and now she is my role model. I still don’t know how she does it.

Weary, bone-weary. It’s different than tired. Weary is an emotional exhaustion that is hard to explain.

X is impossible

Yoga-mama. Okay, this isn’t an emotion or an adjective. Yoga helps me feel centered and strong, emotionally and physically. My teacher, Dorie Silverman, reminds us that in yoga philosophy your birthday is the day “the divine” chose to inhabit you. On our birthday each year, and every time we step onto our yoga mats, we remind ourselves of this divine spirit. We go to the mats to love and take care of ourselves; Philippe and I go to synagogue and celebrate Shabbat for the same reason. To take care of Charlotte we have to take care of ourselves and our relationship. Yoga has proven more helpful to me in that respect than therapy ever was.

Z, like X, is impossible. But it gives me an opportunity to end on this note: No matter how angry, frightened or weary I am, I am always grateful for the blessings. In many respects, I have no choice. Charlotte needs us to remember how much we wanted her, what we went through to get pregnant with her, and why we fight every day to get her healthy. Some of you may remember our wedding vows—Rabbi Cohen had us write letters to each other about what we loved in the other person and he talked about those qualities in our ceremony. I’m embarrassed sometimes by my blessings and privilege–Philippe is still my best friend, my pillar and my reality check. He makes me smile. I’m so grateful to have him in my life. If we’ve maintained our sense of humor, it is because we know the only way to make it through this difficult time is to be grateful and to keep laughing. Laughing is what we do, what we’ve always done, and what we do best. Really, as I said to Trudy, what choice do we have?

The Tube Stays Out, For Now….

Charlotte saw Dr. Salem today. She weighed in at 11 lbs. 9 oz.—-1 full ounce less than on Monday. I came very close to crying when I saw the scale.

Dr. Salem wasn’t thrilled with the weight loss. But, I told her that Charlotte was taking more food orally every day, with every feed. It’s been remarkable, really. So, we got 3 more days of reprieve. We go back for a weight check on Saturday. If Charlotte has not gained weight, the tube goes back in.

Charlotte ended the day with a total of 640ml of formula taken orally. That’s the most she’s ever eaten. My fingers and toes are crossed.

By the way, Charlotte is 25 inches long—a full inch longer than last month.
Hmmm….at what point do you say the baby is xx inches “tall” instead of “long”? Does it have to do with when she is vertical?

Cardiac Conference Results

Dr. Young called today with the results of the VQ Scan. Nothing unexpected; just confirmation of what was learned during the catheter procedure and angioplasty.

The measured blood flow to the left and right pulmonary arteries: 70% to the LPA and 30% to the RPA. This will serve as a baseline. Charlotte will have regular follow up echocardiograms. If the TR jet (pressure in the RPA) looks concerning, she’ll have another VQ scan as a more direct measure of the pressure. If the VQ scan confirms high pressure levels, we’ll move to another angioplasty. The idea is to stave off the next surgery for as long as possible, but to continue lowering the pulmonary pressures in the hopes of preserving the pulmonary valve (one of Charlotte’s replacement parts).

Exciting news out of this procedure and the Cardiac conference—we’re weaning Charlotte off of the Viagra! We’re thrilled to be losing a medication (she’ll be done with it in about 10 days). This one has been especially difficult because we had to serve it at 7 a.m. and 11 p.m. so one of us had to be awake. We’re down to twice a day and we’ve moved Viagra to the 9 a.m./9 p.m. slot with her other meds. We’ll be weaning her off of the Lasix next. Yipee!!

Next Cardiac follow-up should be in about 3-4 weeks.

On the feeding front: Charlotte is eating more and more every day. We don’t know if the tube was causing a problem and she’s now able to eat more comfortably or if the angioplasty is kicking in. I guess it doesn’t matter and is probably a combination of things. Keep eating, kiddo!

Charlotte is on Tube-Free Probation

Charlotte had what looks like a rash on her cheeks, her chin, all the way to her ears. I didn’t want to put the tape on her face until she saw a doctor.

Dr. Ramadan took one look at her and said:
1—The rash is typical baby stuff. She’s wiping her hands all over her face after sticking them in her mouth. The little red bumps on her face are dry skin from rubbing her face. “Just normal baby stuff.” She’s getting the rash under her chin because she’s getting chubby. “Getting chubby,” the doctor’s exact words. Hooray!

2—When I told Dr. Ramadan how well Charlotte had been eating since the tube came out, she gave me the go ahead to leave the tube out until Wednesday as a trial. Fingers crossed.

Today’s weight= 11 lbs. 10 oz.

The Tube Slithers Out

Little Charlotte’s cheeks are so ravaged by the tape we use for the NG tube. Today, she was wiggling and writhing while we pumped a feed. She basically rubbed her cheek against a cloth and the tube slithered right through the tape and out of her nose.

We just can’t bear to put the tube back in. We don’t want to make her scream and we don’t want to hurt her little cheeks any more. And she’s eating so nicely since the thing came out. We’re going to give her a night off and decide what to do tomorrow.