Zoe means "life"

Please visit this blog to learn about Zoe, a beautiful little girl with Trisomy 18, and her parents, Jen and Greg, who have spent their Thanksgiving holiday in the hospital where Zoe had heart surgery. Despite the prevailing medical opinion that a child with such a diagnosis is "incompatible with life," and despite being told that they would have a hard time finding anyone willing to treat her, Zoe's parents decided that if what threatened Zoe's life might be correctable, she deserved the chance. God brought them into contact with medical professionals willing to treat Zoe, and she had surgery on Tuesday.

However, she has had complications since that time, and is currently in the PICU on a ventilator. My friend Tamara, mom to a "heart baby" (Conner), and someone who follows the story of several babies born with congenital heart defects, can tell you that these surgeries are scary, and things can get complicated ... having absolutely nothing to do with a genetic diagnosis.

Please pray. For Zoe, for her parents, and for her many siblings who are separated from their beloved sister, and worried in the way that only siblings can be. We know, from experience, the great power of prayer, and that God is mightier than scary statistics. May God be glorified in beautiful Zoe's life. And return her, safe, to her family!

Not Me Monday! ~ (Calling all moms and dads: feeding advice needed.)

OK, we're officially in over our heads.

Mallorie's lost about 1.5 lbs ... probably in just the past month. I was going to write this out honestly, but just realized I'm going back and changing the title (done) so I don't have to own up to all this. :)

I can admit this: When Mallorie was getting ready for surgery in September, I decided, single-handedly, to put her back on an all-milk diet. Breastmilk, not cows milk ... in case you want to go all medical on me. I felt it was a great plan for avoiding the problems (gagging/reflux/vomiting) we run into when we mess too much with her diet, because the one thing we know she does NOT struggle digesting is breastmilk. And it was also a way to make sure she was getting the great immune-boosting benefits of human milk.

This was not the problem. This plan did great; she kept her wt up (and I think gained a tiny bit), wasn't having digestive problems, and did great recovering from surgery. She even continued to do great when I sort of "forgot" about The Plan, and continued her only on breastmilk, because, heck. She was doing so well! She was healthy, energetic, and her health was fine. And since shortly after my supply dipped after her February hospitalization, I discovered the generous gift of milk from other mommies who allowed us to have some of their excess (Despina, Lyanna, Michelle, Tamara), I wasn't really stressed about The Plan or the timing of it all.

Here I'll start "confessing."



While I was busy forgetting about The Plan, I did not realize that she was really only refluxing at night, so I didn't decide to just eliminate a nighttime feeding so she could go a longer stretch at night between feedings ... but forget that she needed to make up those calories elsewhere.

I surely didn't focus so hard on replacing total fluid volume to prevent constipation(so I gave extra water and Pedialyte pre-feeds), that I forgot everything I ever was taught about nutrition.

I didn't fail to even think about calories until the Early Childhood dietician came by with his portable lie detector scales.

I didn't sort of shrug when I realized my error, and think, hey, she's still healthy, and sort of slowly edge back on The Plan, until a couple visits to Dr. B required something of an admission ... like, OK. I think the only reason she lost weight is that she's been getting fewer calories. (To which Dr. B replied, Ya think???)

It certainly didn't take me that long (like only a week between first polygraph weight check and the one where Dr. B pulled the acknowledgement out of me) to realize that just maybe I needed to add back the missing feeding, and then figure out adding solids to her feedings.

Because I'm totally not that dense.

End of confession. Now for the request. There are 6 yrs between Mallorie and her brother who came before her, and I just don't remember these things. Heck. I was the whatever-it-will-all-work-out mom when it came to fitting in the solids, and I just don't think it was this hard to figure out. What are we doing wrong? Do other babies spit up sometimes when they are transitioning to solids? I remember being told to try small amounts of solids, and only one new food at a time, but was it really that hard getting to a fairly high percentage of solids per meal? I honestly don't remember. I do know I was the mom who (on principle, and I'll admit that) waited till seven months old before starting any solids .. because I was told to start at four months (by an antibreastfeeding doc), then surely/absolutely by 6 months ... :) But I simply don't remember all this gag/vomit/reflux, even with her refluxy brother.

So you parents of non-tubefed babies, did you have any struggles with the transition, and if so, what helped? Because what she is struggling with is getting to a normal (solid) foods diet. At least we know tubefeeding formula issues aren't part of the problem.

And you parents of children with tubes. Is this something typical of just having a tube? I'm having trouble seeing it that way, because with her, the bad problems came first after a long hospitalization, and then with the addition of certain foods. And they seem to go away when we identify and eliminate certain triggers (like we know she can't do milk or eggs right now).

But obviously, I'm in the dark here, and not sure about much of anything at all.

Not Me Monday!

This afternoon, in the middle of Mallorie's speech therapy, I did not notice that her fingernails had a week's worth of extra length,

then look at my own nails, and THEN realize that Jacob was at that very moment sitting in a class at the all-day homeschool co-op, with nails that looked like this:

I did not then make a mental note (which will be forgotten, as it was not a
written note) that I MUST clip 59 nails tonight! Because we are going to see the illustrious Dr. B tomorrow. And of course she has never told me that dirt on faces she can overlook, and messy hair she can overlook, but the one thing she cannot stand to see is untrimmed, dirty nails on children.

And, of course, I do NOT actually concern myself what she thinks.

And it did not occur to me that it might be a little odd, for me to actually care about things like this, after all these years of parenting.

Good thing none of this is actually true. Right?

And I am also not still using my cell phone to put pictures on here because I haven't the time patience ability to use a real camera and download the pictures like real blog owners do.

And I do not still have to go here every Monday, in order to figure out how to participate in this therapy.

And I did not smile writing "59 nails," knowing most people reading this will not understand. :)

Not Me Monday!!

I love McMama's blog, and her, for coming up with this Monday morning therapy.

Let's see. I did not panic after publishing last week's Not Me Monday post, and eventually remove the "disclaimer" that had been at the bottom of the post before too many people read how my mind can wander if I'm sleep-deprived.

I did NOT fall asleep for 3 hrs on Sunday, after returning from the "retreat" I got to do this weekend. I mean, retreats mean rest, and hours and hours of refreshing sleep. So I returned well-rested.

I did not forget to pack PJ's for the retreat, and then just before leaving on Thursday evening, grab my oldest pair of torn-up sweat pants and t-shirt, and then feel so relieved on the last morning that I had woken up early enough to have showered before it was "time" to rise. Because wet hair does not beat tattered "PJ's" on any day on retreats.

I did not laugh out loud this evening, when I re-read the "Retreat" post from Thursday and saw this: But you know I occasionally seem to worry, anyway, .... And I cannot hear anyone who knows me in real life, reading that and gasping, "Really?? You??"

I was not at all an anxious freak about going away this weekend, nor did I have flashbacks about that NYC "Wilderness Experience" I did years and years ago in college, during which Nancy Mean dropped our class on 42nd street (not The New 42, the Old 42nd Street, the "Deuce") and told us to spend 2 hrs "sightseeing," and then find our way by subway to our next destination. At night. Or remember getting dropped off in the middle of the woods to stay for 24 hrs with only water, pencil and paper, sleeping bag, .... and no toilet paper. So I never associated the secrecy of all of this event with those experiences. And I do not wonder, after all these years, why I was the one always pretending to be unafraid on those wilderness experiences, because I was by far the bravest retreatant to attend this weekend. Untold numbers of people were blown away by my courage, wild dancing, singing, and generally loose fun-loving personality!

Because I had no anxieties about the unknown elements of the retreat I was to be going on, I did not just a few days before I went, bully/annoy/nag/cajole my friend whose name I cannot mention here, or my daughter (again, not mentioning names and she's NOT a blog contributor) to give me just enough details to calm me down. I would never have done that because they were sworn to silence, and I have no fear of letting go, .... not me!

And I am not feeling that words would be inadequate to express the gratitude I feel to so many new sisters for welcoming me into their hearts and lives, and to some of them for expressing surprise and disappointment (in a totally complementary and laughable way) when they found out somewhere at the end of the retreat that I was not Catholic (because it was a Catholic retreat). I didn't chuckle when they told me that they think I'd make "an awesome Catholic." I felt totally loved. Ooops. I meant to say, I didn't feel at all loved, not at all. And I didn't have the best time I've had in several years. Nope, not me!



And Becca, Mallorie's speech therapist, didn't seriously dance and squeal this morning when I told her that Dr. B doesn't mind us feeding Mal without a swallow study.

Retreat

I have an amazing opportunity to leave for a few days for a religious retreat. Back in May, a friend suggested that I would enjoy the experience, and I began thinking about what it would take to make it happen within my level of comfort, "one day." Initially, I couldn't imagine it happening at all. That's because, with Mallorie demonstrating apnea from her first day of life, my life since her birth has revolved around watching her breathing. It's more than the normal, have a newborn and be afraid to leave the room to take a shower, because what if the baby stops breathing? This baby does stop breathing.

We've had some scary times, times when we have had to breathe for her. And a night when I woke (twice in the same night) to sounds I didn't recognize and Mallorie looking like she was having a seizure, because I had become so sleep-deprived that my body in self-preservation mode, just slept though the alarms and incorporated the noises in my dreams. That night, she had had so MANY episodes of apnea that I'd stopped hearing the pulse ox alarm, and it was only the grunting noises she was making (and God) that woke me in time to "bag" her and get her breathing again.

We have come a LONG way since those early days. For one thing, we learned after that really scary night, that a really low caffeine level was allowing the apnea to rear its ugly head, and we have since become experts at knowing we have to bring her in for a blood level any time she has a days or nights of apnea in a row. And since she's not growing as fast as she did when she was a newborn, she doesn't need dosage adjustments as often, anyway. For whatever reason, apnea hasn't been the major discussion point in our lives in ages, but it is still there. And I don't sleep deeply at night. Just as in the early weeks and months of having a newborn, I still don't pull the covers up too closely around my head when I sleep, because I need to be able to hear the alarm, or the quiet little noises Mallorie makes just before she starts spitting up, so I can give her some water to rinse her throat and stop the cycle, or reposition her to make her more comfortable and less likely to aspirate. And the others in our family seem to not hear her apnea alarms as easily, so I just don't leave home overnight. Ever.

So back in May, when I thought about what would be barriers to me attending this retreat, I thought about the nighttimes and wondered how I could ever feel safe if I was gone at night. I thought maybe ... if we could find nurses or someone else to stay up with her at night. So when the OB who cared for me during Mal's pregnancy also mentioned the retreat, I mentioned my concerns about nighttime, and wondered if I could bring my breastpump. (I had heard you have to give up your keys, watches, phones, ...) She said the pump was OK, and they'd try to help figure out the nighttime situation, and later she got back to me and said she had nursery and L&D nurses who said they might be able to watch her at night. One was one of Mallorie's many "moms," Helen, who was the nurse in charge the day Mallorie was born and present at her birth.

I know. Who ever gets kindnesses like that?? So I began to think, I could go on a retreat.

But over the past few weeks, I got a little crazy over how in the world I, in my OCD-ishness, was going to type out a "care notebook" and include every little thing someone would need to know to care for Mallorie while the rest of the family slept. And I was going to create that notebook in my "spare time." (Do any of you moms out there have a template? Have you done such a thing?)

There are just so many things I needed to include, even if all meds are given before the family goes to sleep. I was thinking I needed to add pictures of her best sleeping positions, explanations/pictures of how to "prime" her feeding tube instead of plunging from above (to avoid stimulating reflux), ways we've learned to stop the gag/vomit cycle, .... You get the idea. I was dreading the process of getting ready so much, and I was going to need 2 retreats just to get over the stress!

Then Tracy, our sweet friend/nurse who already knows Mallorie so well, told us she would be happy to watch Mallorie all those nights. So now, instead of writing out instructions for all those amazing volunteers, all I have to do is ... well, nothing!

But you know I occasionally seem to worry, anyway, so if you don't mind, please pray for Mallorie's health while I am away, and for me to just let go of the worry and enjoy the experience. The other kids, I know can survive illnesses and bounce right back. Truthfully, probably Mallorie can, too. But you know. I like to try to feel like I've got everything "set up," so nothing can go wrong.

Exactly 21 months ago today, I had to open my hands and let go of control, in somewhat the same way I feel like I'm being asked to do today. Though my sweet doctor tried to give me control of parts of the experience that day, truthfully, none of us had control of what God was going to do in that room on that day. And God did just fine on His own. :)

So today, I'm loosening the grip again, and going on a retreat. My first one ever, by the way!

Crazy mommy and crazy sister

Hannah brought Mallorie to me about 30 minutes ago, with panic in her voice. "Mommy! I was watching Mallorie, and she was sleeping on her tummy, and let me show you something."

Here's what I heard.

MOMMY!! MALLORIE!!!! OH, NO!!!! LOOK WHAT'S WRONG!!!!

I was quite short with her, because I was trying, myself, to silence the alarms going off in my head. I let her show me whatever it was she wanted to show me.

"Look. I think there's wrong with her neck or her arm. She can't move it right, or hold her head up or turn it like she did before."

I "heard", HER NECK AND/OR ARMS ARE BROKEN OR OUT OF SOCKET!!! MAYBE IT'S A SEIZURE CAUSING STIFFNESS!!

In my head, I was already halfway to the ER in our car, and texting the pedi on the way. I took Mallorie from her, and the barely visible nurturer in me who knew she was supposed to be calming Hannah, stopped snapping at her and said, "She's fine." And let Mallorie wake up gradually, and soon she was smiling. Her neck and arms are fine. And she's never had a seizure in her life. I deleted the saved text.

So tomorrow morning, when you read my post, you will understand. There's just a lot of crazy in this house.

Not Me Monday

Go to www.mycharmingkids.net to join in.

I recently learned about this therapeutic way to share each Monday about your previous week, so that you can move on into a new week, completely purged of whatever you wish to leave behind. Here goes.

Since Mallorie has not yet had her swallow study, I most certainly did NOT on Sunday let her taste a little bit of Gerber Turkey, Rice, and Garden Vegetables Dinner with her (gasp) mouth.

I did not and would never let the other kids see me do anything like this, either.

I also did not have Hannah participate by letting her puree the Stage 3 food in the Magic Bullet until it was a nice, thin consistency.

And, of course, I did not grin deliriously smile the rest of the day, knowing that turkey means she might be "tasting" Thanksgiving dinner, um, breast milk, in a few short weeks. If she is still in the mood, that is.

I would never have done any of these things, because I actually have to look her pediatrician in the eye one of these days on the 18th.

Oh, and Jessica, I absolutely, positively, NEVER put any of the leftover puree into her g-tube, because you, and Alex's GI, nutritionist, and speech therapist, (and Mallorie's Spina Bifida doc and the dietritician she brought in to speak with me) all recommend that you don't put food down the g-tube! And so that would be just wrong.

Maybe even almost as wrong as feeding her by mouth pre-swallow study.





And that is not Turkey-Rice-GardenVeggie puree on her sweet post-surgery face. :)

Jacob told me this evening, Mommy, I miss the Mallorie with the cleft lip and palate. So I guess I can admit that I do, too.

Kenzie and Faith

Kenzie is back in her home away from home (hospital room!). Please pray for her and for Faith. She has some specific requests posted on her blog.

Brief, but spectacular lives

I fell into bed last evening with this on my mind. That by mentioning only a few of the longer-surviving of the trisomy babies I know, to make one point, I left out the biggest part of the truth about what the fight entails. The literature about babies with conditions linked with the coined phrase, "incompatible with life" and termed "lethal," states that most of these babies will not make it to term. That most who do make it to term and survive birth, will not live long. We were quoted, days, weeks, 2 months. Because of this information, even most medical professionals do not have any sort of hope to offer expectant (or new) parents. And without hope, many will endure a pregancy filled with despair, added to the necessary grieving. Or will choose to end the pregnancy, thinking, "What difference does it make?"

What no one seems to share with parents is that there is hope. Hope that you will fall helplessly and madly in love with YOUR child, regardless of the number of days, hours, or months your baby lives. That your baby will look like his or her relatives. That you will love and kiss your baby's face, even if there is a cleft, or something else unusual. In fact, you will come to love your baby's club foot or cute hands as your favorite features. And if your baby is not a long-term survivor, you will long to relive the moments you shared with him or her again, and again. Or even "just one more time." That you will savor each beautiful photo of your child's life. That there will not be one moment when you regret the decision that you made to hope for life, and wait for God's plan to be unveiled. That you will see, smell, feel the weight and softness of your child, and know you have in your arms an intentional creation of God, a person who was created in God's own image. That God's image must not have to do with physical "perfection."

And if you ask the moms I know who have miscarried babies, or had babies born still, even they will tell you that each baby is remembered, and is indelibly written on their hearts. Most of these babies have names given by their families. You should read the long list of comments left on the Bring the Rain blog for National Day of Remembrance for pregnancy and infant loss to see the impact a brief life can make.

There is always hope when you open your heart to love and to God's gifts.

So meet the rest of the babies who have graced dear friends' lives, and whose brief, but spectacular lives have made a lasting impression on my heart. Whose parents chose to trust in the hand of a personal and all-powerful, all-knowing God who does not make mistakes. Who did not view their babies as incompatible with their lives, despite a diagnosis of Trisomy 18 or 13.

Meet Christian Dale, Eva Janette, Macie (T13), Maddox, Mary Grace, Nathan (T13), Poppy Joy. And I can't leave out Asher (who did not have T18 or T13). Each a precious child given God's breath for their time on Earth, and now comfortably seated on God's (apparently spacious) lap! Each fearfully and wonderfully made, and not a mistake to be "fixed."

See! I will not forget you . . I have carved you on the palm of my hand!
Isaiah 49:15