Of Course, It's Always Followed By Bad News

So much for our winning streak.

Charlotte's sleep study results were less than stellar. She continued to have pretty severe obstructive sleep apnea, accompanied by desaturations of her oxygen levels while on CPAP pressure of 5. When they tried to increase the pressure, she had less Obstructive apneas, but more central apneas. They tried switching her to BiPAP and she went to straight central sleep apneas.

Awe.some.

So we're kinda taking the, "We're stuck with this, let's make the most of it" course of action right now. This sleep study has at least told us that, no, we're not crazy, her sleep apnea has in fact gotten worse over the past few months. (We kinda thought we were staring to make things up). Currently we are increasing the amount of oxygen going into her CPAP, and maintaining a CPAP pressure of 5. Her pulmonologist figures that if we can keep her oxygen levels constant, regardless of apneas, then at least she isn't sustaining brain damage while sleeping. (She was consistently maintaining sat's into the 70's, which is not the worst she's ever done, but it's not recommended.) However, her cardiologist might not like the extra work load that is put on the heart when you fail to, you know, umm, breathe. So we'll increase the oxygen until her appointment on June 6th, where the pulmonologist warned us the T word might be used.

Tracheostomy.

To be sure, we are a long way off from this procedure. However, Charlotte's heart is not exactly stellar, and her sleep apnea is only pushing it closer and closer to a rather ugly cliff. Pulmonary would like to see her tonsils and adenoids removed first, and we agree. (Even though ENT has said that a T&A will not do anything, as her tonsils and adenoids are not enlarged. Whatever.) If a trach is placed, it will only be done after we've removed all other possibilities. Cardiology, I'm certain, will recommend just watching her heart and making sure that there are not substantial changes to its structure, and/or function as her sleep apnea continues. Should one of those variables change, we'll try medications to combat the stress placed on the heart by the sleep apnea.

Sigh.

It's just like her pulmonary doctor said, "Charlotte, well, Charlotte... She's just one complicated little girl."

That she is. That she is.

I Love Good News

Seriously. Today rocked. Here's the results from Charlotte's NICU follow up.

She was 11 months, 3 days corrected and 14 months, 28 days actual at the time of this testing.

Cognitive: 10 months

Expressive Language: 8 months {Biggest gain. She tested at 3 months just two months ago.}

Receptive Language: 8 months

Fine Motor Skills: 12 months {Another major gain, and our highest score-- so thrilled!}

Gross Motor Skills: 7 months

Holy crap. I cried. I cheered. I clapped my hands when she did things like banging two objects together in midline.

2 weeks old

She has a long way to go, but dangit, she's come so far.

Can you believe this is the same girl?

The same girl who could wear my wedding band up to her shoulder?

Today. Almost 15 months

The same girl who spent weeks on the ventilator, months in the NICU?

We love this girl. We love her regardless of test results, regardless of progress. But we're so proud of her. We celebrate the effort she makes each and everyday to succeed. We applaud her dedication to life, her ability to bring joy to everyone she sees. We know that there will be tests that bring disappointing news. Oh how we know that.

But today, today, we are focusing on those test results that feel so few and far between. Today we are believing that those kind of test results will be her future.

We could get used to that.

Sleepy Sleepy

Tomorrow we head back to CHOP for another sleep study. This one will tell us whether or not the hours of fighting with Charlotte to put the darn CPAP on every night are actually doing any good. Cross your fingers.

We also have an appointment with the NICU at CCH tomorrow, to track Charlotte developmentally. Crossing our fingers that she's testing as well as we think she is :)

And because she's much cuter than anything I have to say... here are some pictures:

Post nap, prior to getting her O2 back. She's so happy to have the CPAP off!

We call it her wrestling helmet. The CPAP head straps go on before she falls asleep, and then we add the mask once she's in a deep sleep.

Unless, of course, she falls asleep while you are holding her. Then you just have to keep holding her, because it might be another six months before she'll do that again.

We were told to put the CPAP on her during the day while awake so she wouldn't be frightened by it if she woke up with it on. Yeah. I don't know about that..

I could eat.her.up. Yummy.

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Feeding

Once a week, we have Speech Therapy, which primarily focuses on feeding. Or tasting. Or just plain accepting the spoon.

Miss Charlotte Amalie has never "eaten" by mouth. The most our little gal has ever eaten in a sitting is about 1.5 ounces of milk from a bottle. And yet, day in, and day out, we sit down with her, three times a day, to show her just how fun it can be to eat.

We play with food (put it on her tray and let her explore), and we taste food (tiny, tiny, TINY amounts on a spoon). We try boluses of food, we try scant amounts of food. We've tried holding her feeds, we've tried changing her calories.

Charlotte's response is making me worried about her when she becomes a teenager. "Meh." She's already apathetic.

I know, I know, she won't always be on the tube. And the reality is that she's come a LONG way in the past six months. Six months ago, she would gag and retch and turn blue at the mere sight of the spoon. Or when you opened food near her. Or if she could smell it, or see it. Or if she just didn't like you. (Not really, at least, that's what I'm telling myself).

Now she will reach for the spoon and put it in her mouth. As long as there isn't any food on it.

The really irritating part is the regression. Charlotte was a sickie-head (I hand out with a three year old too much) last week, with a simple GI bug. She weathered the illness remarkably well, despite her high temp and constant retching. (At one point she puked through her nose. I'm no doctor, but I'm fairly certain that with a Jtube AND a nissen, that is just not supposed to happen). Prior to her illness, she was allowing foods in her mouth without gagging. She wasn't swallowing them, but that's an entirely different battle.

This week? Nada. Gagging and retching again with the "introduction of food into the oral cavity," as per her therapy notes. It's just a nasty cycle. She has a negative experience with eating, so she gags to protect herself. Gagging and retching cause a negative experience, so she's more likely to gag the next time food is introduced.

I'm exhausted by it. I'm frustrated that four tastes of baby food is "remarkable progress" for little Miss Charlotte Amalie. I'm frustrated that we've got years of this darn GJ-tube in our future. I'm frustrated that we've bypassed bottles and sippy cups. (I don't know why, those things are a pain to clean. But I miss them none the less).

I'm frustrated that I have to accommodate her tube. Can she wear this outfit? How do we bathe her? Can she sit on the beach? How does the hole in her abdominal wall affect her core strength? How much tummy time can she do before her stomach contents leak out? (Gross, I know. It's actually one of the least gross things that goes on in our house... disturbing.)

I'm frustrated that I have to love it. I have to love this darn tube because it keeps her alive. Thriving. Plenty chubby, let me tell you. I frustrated by the power it has over our lives. By the unyielding influence it exerts.

I'm mostly frustrated by the fact that the less CA eats, the more Oreos I seem to consume.

Just sayin'

Not Again...

I need a favor again! Shannon, a mom on a micropreemie support group I belong to, is the mom of Ashton, born at 24 weeks. She's had another pregnancy that ended at 18 weeks, with a little boy, Hunter. She's pregnant again, and is 23 weeks along right now. This week she received some pretty harsh news, that despite having a cerclage, her cervix is shortening pretty significantly.

Head on over to her pregnancy blog and send your wishes of support and comfort. You can read her story here.

Mother's Day

In my church, the "sermon" on Sunday is given by members of the congregation. A week or two (if you are lucky) prior to your "assignment" a member of the clergy asks you to speak and gives you a topic. Traditionally, you are asked to speak if you are new to the congregation, as an "introduction" talk, and you are typically asked to speak if you are leaving the congregation. Since we're heading out to California, we knew this was coming.

Peter managed to weasel his way out of giving a talk by moving sooner than the Bishopric expected, and I was left with the task of giving our farewell talk.

I was asked to speak on Mother's Day, with the topic of "The Virtue of Mothers". A few asked to have a copy of the text, so I figured I'd just put it here on the blog. And this way, my mom can read it, too.

So happy Mother's day y'all. Happy Mother's Day. 

Last year I spent Mother's Day with my daughter in the Neonatal Intensive Care Unit. She had gained not quite twice her body weight since birth, tipping the scales at a whopping 2 pounds, 1 ounce.

I was laying down that Sunday for the obligatory post-church nap, when we received the phone call. Charlotte was not doing well and was being placed back on the ventilator. As we rushed back to the NICU, we learned that she was requiring quite a lot of support. We spoke with the neonatologist and gravely agreed with their plan. We'd try one more course of heavy steroids to attempt to lower her ventilator settings. If that did not work, we would remove care. 

I learned a lesson that day, and many times since. It's a lesson I probably should have learned, from watching my mother, grandmothers, and mother-in-law, but one I never really quite grasped. I felt like the Grinch, in his moment of epiphany, only my lesson was not about Christmas, but rather, the role of mothers. 

Motherhood, I learned, is not the same idea as I had been told. It wasn't the same role that I had been taught in oh so many Young Women's or Relief Society lessons. Motherhood, I learned, was so much more.

Sure, there are parts of being a mother that involve driving kids to school, tucking them in at night, and counseling them about decisions. Sometimes motherhood does in fact involve getting pregnant and physically delivering a child.

But more often than not, motherhood has nothing to do with the physical acts we so often associate with being a mom.

The virtue of mothers is that it lies within us all. Whether we be biological mothers, step mothers, adoptive mothers, mother-to-be, mothers of full term kids, or special needs kids, or special-because-they-are-our kids. Whether as women we have children, are desperately waiting for children, or have buried our children. Whether we're not sure if we even want children or if we can't stop trying for "just one more." Whether we work outside the home, or in the home, or are employed by our own families. The virtue of mothers lies within us all.

In fact, just to be a little controversial, I'd even say it lies within our husbands, fathers, and brothers. Every Sunday while Charlotte was in the Chester County NICU, Peter and I would spend the afternoon with her. It was a special time, our time to spend together, just the three of us. Each Sunday, Peter would spend that time with Charlotte, barely the size of his hand, doing Kangaroo Care. During this time, Charlotte's vital signs always improved, and she was the most stable of any point throughout the week. Sitting there, watching my husband warm our tiny little girl on his chest, I was reminded that some of the most important moments in mothering come from those whom the world would not recognize as mothers. 

In my congregation growing up, there was a wonderful couple who did not have children of their own. Jeff was our home teacher, and became a second father to me. His wife, Bonnie, worked in the library at church. Despite never bearing a child of her own, Bonnie is one of the most poignant examples of the virtue of mothering. A young man in our ward struggled with social and academic situations. Often viewed as the troublemaker, this boy found it difficult to related to others. Yet every week, you could find him sitting in the library with Bonnie, as she spun her own wool, telling her about the snakes he saw, or the stones he collected throughout the week. Bonnie did not try to befriend him, she simply befriended him. She did not act interested, she was interested. She may not have tucked that boy in at night, but by the genuine smile on the face of a young man who was often forlorn, everyone knew- Bonnie had the virtue of a mother.

My own experience in mothering has not been the one I imagined as a child. Despite our circumstances, or maybe because of them, I've come to believe that few experiences with mothering are as we imagined. Few are the mothers who fit the idolized fantasy: marry the prince, have a baby (or four), enjoy the task of raising the perfect children, and step back to watch them continue the cycle.

For so many of us, true mothering occurs when that fantasy is shattered. We don't get married, or we can't bear children, or our children are sick, or die, or grow up only to go astray. Maybe we find ourselves divorced or widowed, with children still to raise. Maybe we find ourselves grandparents, raising another generation long after we though we would be done. Maybe our husbands lose their job, or we have chosen to be the breadwinner. Maybe in the quiet moments of honesty we admit that we're exhausted, overlooked and worn out.

And yet, in those moments, when our lives are nowhere near the picture painted in Sunday School lessons or Family blogs, we pick ourselves up. Many times, very slowly, many times after great delay. But we pick ourselves up none the less and continue the work. 

It is a work very different from the one we may have imagined. And yet, the blessings of that work are just as unimaginable as the work itself. Watching Charlotte this morning, nine times the size she was a year ago-- an incredible eighteen times the size she was at birth-- I am struck by the power and magnitude of mothering. Today, my children test me in ways I had not foreseen, and I am blessed by that same measure.

This is not to say that mothering is all difficulties or quick adaptations. Part of the virtue of mothering is the ability to savor the moments. Like when Caleb points to a man with a pony-tail and very clearly asks, "Why are you a lady?" Or in the more uplifting moments, when we sit down to dinner and he quietly exclaims, "Mommy, I love spending time with you."

The virtue of mothering comes as we learn to embrace what we have, the situations we have come to live in and we simply make the most of it. That virtue fills our lives as we learn to stop comparing our inside to everyone else's outside.

May you all have the most Happy of Mother's Days.

Vacation Pictures

All the Farr cousins. Believe me. This is the best shot we could manage.

Charlotte at the beach!

Siblings. Charlotte 14 months actual, Caleb 3.5 years

Charlotte and her cousin, Sophie. Sophie was SO good with Charlotte.

Have chupi, will travel. Not to pacify, mind you, rather, just to chew on.

The last week of April my siblings, parents, and paternal grandparents rented a house in the Outer Banks. It has been almost 5 years since all of my siblings have been able to attend a vacation together, so it was great. Even better, this is the first time all the cousins have been together. Last summer almost all of them were present for my sister's wedding, but Charlotte was still in the NICU, so she was absent.

Not to get all emotional or anything (that's a hint that I'm about to get all emotional), but seeing Charlotte together with all the other cousins was pretty amazing. Last year at this time, Charlotte was a pretty sick little girl. She was on the oscillator vent and we weren't really quite sure if she could get off of it. To see her sitting around, spending time with her cousins was a gift I just wasn't expecting. It was pretty amazing. At one point, Maeli remarked, "I think Charlotte really likes me! I love spending time with her." I may or may not have run to the bathroom and cried my eyes out. Cried out some big old tears of pure joy.

Maybe.

But I wouldn't tell you if I did.

Our Days

 Charlotte didn't have a nurse today, so it was just me and her.

Or me versus her.

But that's not important. Here's a video of how our feeding session went today. All in all, she did awesome! Six months ago, she would gag and retch at the sight of a spoon, or as soon as you would place her in the chair. We're so proud of how far she has come. Who knows what she will be doing in the next six months?

(I took this on my phone, so excuse the quality. And the ridiculousness of my voice while talking to Charlotte. And yes, we use bubbles to distract her.)

Employment

Dear Charlotte,

Today is just one of those days. Maybe its because Mother's Day is around the corner, maybe it's because Daddy is out of town, or because we've had to experience the loss of a grandparent. Or maybe it's just because its raining today. Who knows. These days come and go without a mention of return, without a warning of arrival.

We're so proud of you little girl. We're so amazed by how well you are doing. We're so blessed to have the smiling, interactive baby that we have. Because we know how bad it could have been. We know too many who have faced headstones and caskets, too many who have never had their children look into their eyes. We'll never, ever understand how bad it could have been-- no one can; no one who has not actually laid their child to rest can ever understand. But we know of it. We've lived around it and in it and we've walked through it.

Despite our knowledge, on days like today, I feel marginalized. As though the whole of society continues about their days, supporting causes like "Breastfeeding in Public" and "Home Births for All" and I want to scream. I want to scream, not because I am angry at their causes. Not because I do not believe in their vision.

Rather, I want to scream because I just want your situation be noticed. I want someone to understand. I want the world to know that not everyone gets a "choice" in their birthing plan, nor do they care. Those people are more worried about the ventilator settings and the results of blood tests. They are more concerned about MRI results and ultrasound findings. Those people just want their baby to live, forget how they entered the world.

I want your journey to be recognized by those who have not had to take this path. I want to be understood by people who have not spent months upon months in the NICU. I want to feel as though others are concerned, others are devoted to your cause, not because they too have been touched by this plight, but because it is something that has been normalized, something that has been accepted, confronted and recognized. I want to not have to educate so many on the effects of prematurity. I want to be able to explain that my daughter was born 16 weeks early and have someone understand just a little about what that means. Just as a cancer patient does not have to explain how difficult chemo is, I want a basis of understanding.

I know that understanding only comes through education. I know that I have a job to do. I know that as a parent of a premature child, the only way prematurity will ever be understood is if I help to educate those I interact with on a daily basis. But on days like today, I just want to curl up in bed and cry. I didn't ask for this job, and I really don't want it.

And then I look at you, and my feelings of pity and frustration feel trite and ridiculous.

I wanted you. I want you.

And I have you.

If I have to take this job to get you, I'll do it a million times over.

Consider my position full time.

Your Faithful Employee-
Mama

Wrapping Things Up

These days we are working hard to start wrapping up Charlotte's medical care here in Philadelphia and preparing to descend on the poor, unsuspecting doctors in San Diego. I don't think they have any idea what they are about to deal with, and I'm not referring to Charlotte's medical needs. More like Charlotte's needy mother.

This week we see pulmonary and surgery. Next week is nutrition and GI. After that we have NICU follow up and a final appointment with her pediatrician for her 15 month check up and vaccines. We've already checked in with cardiology, ENT, and ophthalmology. We've set up a sleep study in San Diego and we've been assigned specialists and a primary care doctor.

Phew. I'm exhausted. Here's a picture of how darn cute she is to remind us that she's worth it all.





Yupp. Definitely worth it. That, and so much more.

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