home

We are home!

Moriah and I arrived home last night at 7 pm. We surprised the boys, which was super-fun and a great birthday present to Jackson, as it was his birthday yesterday!

Many, many thanks to my mom, who went above-and-beyond in this last week and did so much to support us and help us out. She was there yesterday for the echocardiogram, the LONG wait for discharge, and to bring Moriah and I home. We are so grateful to be well-loved!

My thoughts this morning are with a baby who was added to our room yesterday afternoon before we left--a little boy named Jospeh, who appeared to be born with a severe cleft pallete. I had the impression that he is parent-less and may be a ward of the state, and his little cries all afternoon just broke my heart. May God bring him all he needs in the days ahead!

Also, a nurse yesterday shared her life story with me, through tears. A story that included the death of two of her three children. My prayers are also with her this morning.

We rejoice with those who are rejoicing, and mourn with those who are mourning. In this way, we experience life in all its beautiful and horrible fullness.

Thank you, friends, for grieving with us, for hoping with us, for standing with us. Your laughter, your tears, have been of great comfort to us. Moriah will have six weeks of recovery here at home (we have to be careful how we lift her, and be sure her incision heals well, and do a few doctor's visits, and have a visiting nurse)...mostly, we are marvelling that the surgery is really behind us, and the post-care not nearly as scary as we thought. So thankful this morning to have my husband home for the next week and half to help Moriah and me, and so thankful to God for all the loving people who brought meals, baked cakes, dropped off bread, sent flowers and gifts, showed up, walked our dog, picked up our children...where would we have been without this community of love? Thank you, all.

home today!

We should be leaving the hospital within an hour or so! I can't believe it...over the weekend, they said they'd do an echocardiogram today and possibly we'd go home tomorrow morning. But today they determined we are all set to go home; we're just waiting for a last check-up with the nurse practicioner and the cardiologist and our discharge papers. I can't believe it.

Saw Moriah's heart of the post-op echocardiogram study today. Mom and I could see all four chambers, the valves between them, and the two patches on the septal wall (the wall that divides the atria and ventricles). I had this overwhelming feeling of all that conspired to make Moriah well...the expansion of the cardiology clinic here at Children's in the 1970's (as our nurse, who has been here since then, told us), a man named Dr. Emani who decided at some point in his life to pursue cardiac surgery...so many little details, all coming together to bring health to our little girl. How does one say thank you for such a conspiracy of love? I am truly grateful, and our daughter is well because of so many people who chose a particular life course to better the lives of sick children. This is a God-work, as it is marked by love, and I am humbled again to see it sneak into our lives and make another one of our children whole. To have two children reborn to us by miracle-medicine, this is a divine work, and we are unsure how to even say thanks.

thanks

After journaling a prayer of thanks this morning, I opened the Psalter to this morning's reading and read these words: "Thank you! Everything in me says, 'Thank you!' Angels listen as I sing my thanks. I kneel in worship facing your holy temple and say it again, 'Thank you!' Thank you for your love, thank you for your faithfulness; Most holy is your name, most holy is your Word. The moment I called out, you stepped in; you made my life large with strength." (Psalm 138)

I love that image--a life large with strength. I used to believe that God's blessings were evidenced in goodness, as defined by things I wanted. But Moriah's birth has taught me again that this is not the case. I wasn't sure I wanted a baby; I got pregnant. I wanted a healthy baby, I got a baby born with an extra chromosome and a heart defect. I wanted a natural childbirth; I got a C-section. I wanted to breastfeed; I lost my milk. In eleven weeks, it seems that most of my prayers have been answered with a resounding "NO."

And yet. And yet I give thanks today, as one who is realizing again that when what I want in life actually does happen, it is a mercy, and a grace, and that when it doesn't, I might still learn to be thankful, and to trust. I wanted my baby's heart to be made well, and it is well. And mostly, I have asked for the strength to walk on through these past weeks. I sit in Moriah's hospital room this morning as the sun streams in the windows, and feel this strength, and say thank you.

Today is Moriah's 11-week birthday, and I took some photos of her scar, now that all of her wires and tubes are out, to celebrate. It's also Jackson's 12th birthday--his 6th birthday celebration with us. And, it turns out, it MIGHT be the day we're discharged from the hospital. Moriah had a fabulous day yesterday, resuming her usual eating habits and rhythmic way of life. She is going in for a sedated echocardiogram this afternoon at 1pm; if she wakes up well, and eats well thereafter, they may send us home. Unbelievable.

"For all that has been, thanks. For all that will be, yes."

hope

Sometimes, hope is profound. When we hope for a good outcome for our daughter, even while knowing the risks, for example.

Othertimes, hope is very simple indeed. After a long day yesterday of a flight-y nurse who was really freaking me out with her lack of attention to detail (this is the disadvantage of the 12-hour nursing shifts...it makes for a long, long day when the nurse isn't so great), today I'm hoping for a competent, communicative, able-to-remember-stuff nurse. I would love to avoid spending my day today telling the nurse when she last gave such-and-such medication and then having to correct her math when she tells me four hours have gone by (um, sorry, only 3) and Moriah is due for another dose (um, no she's not). Spoke with the charge nurse about that one yesterday evening in my best I-am-a-rational-and-calm-mother voice, so I have reason to hope today I will not ever have to deal with Nurse Crazy again.

Other hopes: that the sniffling nose I thought was a reaction to the dry air around here will not turn into a full-blown cold. That Moriah will continue to eat every four hours, a pattern she began overnight, much to my delight. That I won't need an afternoon nap again today; we're taking Orilus and Jackson to the movies to celebrate Jackson's birthday, and I'd love to stay awake for the entire film. That my grande cup of London Fog (oh, sister, how can I thank you for introducing me to this delight?) will never, ever run dry. That I'll have time to blow dry my hair this morning.

As I wrote this, a beautiful nurse appeared like an angel in the doorway, with a schedule for Moriah's meds today. A light seemed to shine from behind her. Hope, my friends, is not the thing with feathers...it is a blonde-headed nurse with a pad of paper, a pen, and a brain for remembering stuff.

May you, too, find lots of small (and even silly) things to hope for today!

moving east

Just as I was getting to bed last night (at 8:30--I know, I know, but this has been my usual bedtime since Moriah's birth, which might explain why I haven't returned your phone calls if you're one of those people who's actually awake past 8:30 and have tried to call me in the last 2 months)...the nurse got a phone call. A new patient needed Moriah's bedspace. So suddenly, suddenly, Moriah was deemed ready to leave the Cardiac ICU and move to the Cardiac floor on 8 East. Her central line was taken out, her paperwork handled...and we were moving. By 10. By 11. By 12. At 12:30, I finally wheeled my suitcase in my pajamas and flip flops behind Moriah's crib (she has a crib now!) from 8 South to 8 East. I think I got some sleep in between those hours, but not much.

I unpacked and resettled Moriah in the dark, as I'm sharing a room with another family. Got my linens. Made my fold-out-chair-bed. Crawled under the blankets for a good, deep sleep...and the other baby in the room began wailing. He settled down. Moriah started fussing. I got up and fed her. I was wide awake and finished a book by headlamp. Went to sleep. Other baby moaning. Moriah hungry again. I think, total, I slept maybe 3 hours.

But the good news is that we moved to the East floor which can only mean one thing...we are making progress! Moriah has so few lines now...just 2 IVs, one in each foot, for getting her meds when she needs them (they stopped the continuous fluids last night to encourage her to eat again). She has pacemaker leads implanted in her chest, just in case she were to suddenly need them--these are some of the last lines to come out before we go home. She had leads for heartrate and oxygen, and an occassional blood pressure cuff. That's IT. I can't believe it.

I have no idea how long we'll be here...probably 5 more days, at least given what we had been originally told. Moriah's lungs need to clear fluid, as they are quite wet (common after surgery). So she's taking Lasix for that. She needs to eat, and show she's eating enough, and putting out what she should. So we're back to weighing diapers, weighing the baby, counting ounces of formula...all too familiar territory for us.

Moriah has eaten three times since 9 pm last night, when she began. But she wouldn't eat this morning at all...I'm not sure if she's worn out, or if she just didn't like the Potassium I had put into her milk. Please do pray she resumes eating today so that she doesn't need IV fluids and can continue to make progress on her own.

They've also taken Moriah off the little bit of oxygen she was getting by nose since they removed her breathing tube yesterday. She's holding her own at a 100 O2 saturation!

Thank you for your continued prayers for Moriah. I'm so glad Orilus and Jackson will make their first visit to see Moriah since her surgery this morning, as I miss them terribly. Tomorrow, we're going to celebrate Jackson's birthday together here in Boston (his birthday is Monday, and he'll be 12). I'm really looking forward to having some good family time this weekend, and hope I'm awake enough to participate. :)

Big hugs to all from Moriah and me!

breathing on her own

As you can see from the photo, Moriah is on her way to becoming "wireless."

About 2:15 this afternoon, her breathing tube was removed, as well as the tube taking bile and air out of her stomach, and the oxygen monitor on her brain. Her face is mostly all clear, except for a nasal oxygen tube that's providing her with a little extra oxygen as she breaths on her own.

On her own. Yesterday, they stopped her heart, cooled her body to nearly freezing, and fixed two holes. Today, I watch the heart monitor's rhythms, watch her chest rise and fall, and feel the miracle of it all. The surgeon came by to see her this afternoon, and I thanked him profusely again (mostly, you want to ask these doctors to your house to dinner, maybe invite them to live with you forever, you become so quickly enamored and grateful to them for saving your child's life)...to which he said that what he had done had been really a small thing.

At first, I was thinking, the guy should really learn to take a compliment (if someone told ME my job was a miracle profession, I think I could at least say, "you're welcome"). But then I was reminded of Mother Teresa's words, "We do no great things, only small things with great love." I wonder if for Dr. Emani, heart surgery is his "small thing," the thing he does so well and so easily he almost takes it for granted. His gift. Even so, he did it with such tenderness and care for us and Moriah that I am deeply touched. His love-gift blesses me, and has changed my daughter's life.

Also, I'm touched tonight by the barista at Starbucks, who made a London Fog so slowly and with such attention that I was convinced it would be the best cup of tea I have ever had...and it is. Mmm. Small things, great love.

Shabbat

The sign in the elevator this morning reminded me that this evening is the start of Jewish Shabbat (Sabbath); for that, one elevator in this building stops at every floor for 24 hours, so that those observing Shabbat do not have to push the buttons and interrupt their worship. What a gift, to have an entire day set aside for worship and reflection, prayer and slowness.

I write from the Cardiac ICU (CICU, which our friends who have been here before endearingly call the Kick-You). Strangely, I do not feel "kicked" at all here. Instead, I am re-discovering the Shabbat calm that permeated my days here three years ago, when I lived for 2 months with Orilus on the isolation floor.

I understand that most people do not experience life-in-hopsital in this way. It is a gift and I can only be grateful for it, and receive it humbly.

My day began a few times this morning, as I was up at Moriah's bedside every 2 hours or so throughout the wee hours of morning. But when I finally got up at 6:30, it was to kiss my daughter again, to lace up my running shoes, and to walk the Fenway.

It's strange how my feet remembered the path. I walked, jogged, and ran this loop countless times in the two months I stayed with Orilus here three years ago, and the passing of that time, and all the life we've lived since, was too much for me to meditate on very long this morning. Instead, I marvelled, and put the thoughts away with a prayer of thanks. My iPod wasn't charged this morning, and this turned out to be a great gift, as I was able to pay more attention as I walked. There were familiar sights--around the next bend, the two stone buildings I remembered were still standing--and then there were surprises, things I had forgotten--the tressle of a bridge that is no longer in use--and new things to see--the rhythm of a couple jogging in perfect unison, the guy with amazingly long and beautiful curly hair, the ducks splashing in the river.

I returned to shower (on a different floor in a different building entirely, as there aren't showers on the CICU) and thought about all the hospital bathrooms in which I've showered...so many hospital stays since we adopted our boys five years ago, and that, too, was a thought too large for my heart to contain. I made my own breakfast, as Moriah's nurse for today watched me pull out my Tupperware, oatmeal, and apple and slowly realized that I knew more about hospital living than she had expected. I ate alone, in a Family Waiting Room (there is no food allowed here in Moriah's tech-savvy pod), at a round table. I greeted another mother who came to dig out her own cereal and bowl from a cabinet (the first stranger to speak to me all morning, as my "good mornings" on the Fenway were all ignored). She was strangely excited about the Harry Potter movie on television, and surfed the channels until she found it, turning up the volume to an unusually loud level. I was amused. The janitor came in to empty the trash. The mother left. The mother's husband came looking for her. I turned the TV off so I could finish my coffee, read another chapter of a book on spiritual living, and journaled in silence.

Meanwhile, Moriah was here, getting tubes pulled out of her body, the nurses preferring me to leave them to their work. So far, she's lost her catheter, a direct line to her atrium, and a chest tube for draining blood. The goal of today is to take out her breathing tube; we had thought this might even happen overnight, but she did not wake enough, and her lungs were too wet. So we wait today, and I feel my mind, body, and heart return to the all-too-familiar rhythm of slow hospital living. A Shabbat. A mindfulness I struggle without much success to maintain in my usual life.

This, today, is life. To know that my daughter's heart is repaired, and healing. To welcome the possibility of a long life for her, even as I ponder what this means. Maybe it means an increased ability to take each day as it comes, to do what I can rather than trying so hard to do it all, to see life as beyond my control. Jason and I have a feeling that Moriah is going to re-orient our lives, as the boys did in so many ways when they first arrived. We welcome the learning we need to do, the growth. But for today, we are just us, sitting in blue chairs around her bedside, reading books and making each other laugh, and relaxing in the calm after an anxiety-ridden day yesterday. Today feels like a Shabbat, a much-needed rest.

As my college classmates and I used to say to one another on Fridays after a First Testament lecture, "Shabbat Shalom." May the day bring wholeness, and peace. Not just to Moriah, but to all of us who are in such great need of Holy Love.

Healed Heart Day

We are so, so relieved to report that Moriah's heart is fully repaired, pumping on its own, and doing beautifully. The doctors keep telling us how beautifully her surgery went, and her nurse here in the Cardiac ICU says she's "perfect" and right where they want her to be. I have so much to write about today, but want at least to share our good news with you, and to share photos of Moriah as she looks tonight (she's sedated and intubated). I'm staying with Moriah while she's in the hospital (probably about a week), and Jason is back and forth, managing the boys at home and visiting us, too. We hope Moriah will be off the ventilator tomorrow (you can see that tube going into her nose in the photos) and will be free of the tube going into her mouth, which is pumping bile and air out of her stomach. Tomorrow, we may get to see her face without anything attached! If all goes as planned, we'll leave the Cardiac ICU Saturday for the Cardiac floor, and hopefully leave for home about a week from today.

Friends, THANK YOU for your prayers today. We were much-sustained and are so grateful for all your love and support. While the photos of Moriah may look scary to you, to us they represent the start of her new life, and the potential she now has to live long, and well. Celebrate with us--Moriah's healed heart day!

Off to bed...it's been a long, long day and I am so tired. Many thanks to you all for loving us today.

Pre-Op today

We survived...and dare I say, thrived...in Pre-Op today! Thank you so much for your prayers and thoughts for us today...we felt so surrounded by love, and had strength for every moment. The day was long--6 hours--and we were bombarded with information, meetings, and procedures, and grew tired of sitting in plastic chairs. :) But as usual, we found the staff at Children's to be amazing, and a great help, and we left today feeling Moriah is in good hands--theirs, and God's.

Tomorrow's surgery time has been moved to noon. The surgery will last 5-6 hours, in which time Moriah's chest will be opened, her heart and lungs stopped and placed on a bypass machine, her two holes fixed, her extra tissue removed, and her heart (hopefully) restarted. Pray with us that they can restart the heart in the OR; apparently sometimes some kids need to come out of surgery still on the bypass machine. We're praying for a fully functioning heart at surgery's end!

Our good friends whose son went through a similar surgery last year told us how they turned their anxiety-filled waiting room time on the day of surgery into a celebration of sorts. It reminded me that this was one of the key ways we survived Orilus' transplant--we marked days, and celebrated them. I remember on Orilus' transplant day, we hung signs everywhere that said "New Life Day" and decorated his isolation room entirely. We're going to do this tonight, here at home...hang signs for the boys to see in the morning, celebrating Moriah's "new heart day." We are hoping for a new heart, and so that's what we are going to celebrate, even in the face of risks. There ARE risks, but there is hope, so we will trust that Love will see us through.

So, friends, party with us tomorrow as we welcome Moriah's HEALED HEART DAY with open hearts of our own! We will be thinking of you all as they take Moriah from us tomorrow around noontime, knowing that as they empty our arms, you are filling our lives with your prayers and whispers for peace and grace. We love you for that.

Happy heart day, little girl. May Jesus show you his great, great grace and make you well.

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videos at 10 weeks old

to-do's

Jason is home from work for the next two weeks and after a full weekend visiting family, we began ticking items off our to-do list today in preparation for Moriah's surgery. Call doctor so-and-so. Cancel appointment such-and-such. Meet with Early Intervention. Finish schedule of who is where and who is helping and what we are eating in the next 2 weeks (yes, it's on an Excel spreadsheet). Sort baby gifts. Store too-big baby clothes in the attic. Donate those that are too small. Email. Run to Target for jeans that actually fit, snacks for the hospital, and Jackson's birthday presents (his birthday is in one week). Iron. Make an appointment to have a family portrait taken. Try to maintain smiles--one crying baby, one grumpy teenager, and the rest of us hungry and tired--during said portrait-taking. Answer the phone. Ignore the phone.

It has been a full and busy today, with tomorrow's to-do list already growing, as Wednesday is our all-day of Pre-Op, and Thursday is the actual surgery. For us, tomorrow feels like the last day before it all begins.

On the one hand, we are coping by doing one thing at a time, by making plans (always I laugh at this irony--so much out of our control, and so obviously, and yet I insist on making a schedule, planning meals, and doing other tasks that help me to manage/control what I can). We're not falling apart, in fact, we're hardly crying. We are having difficult conversations--again with the boys tonight, and with each other last night, as Jason recalled (grimly) the meaning of Moriah's name as we find it in Scripture. Moriah is the name of the mountain on which Abraham nearly sacrificed (or sacrificed, depending on your tradition) his son, Issac. We are left wondering...will a "ram" be provided? Will we see the hand of God's provision this time? And how--and how painfully--will our trust in God be stretched? I think of Abraham, who walks down the mountain, and seems to be alone (his son is not mentioned at the end of the ordeal). Why was he alone? What was he thinking then? And I think this mountain-sense--that we must climb the mountain of Moriah's heart-health, that it is an inevitablity we must face--leaves us wondering how we will venture "down" from the mountain--alone, or with our little girl in our arms?

We hope, how we hope, for provision! We comfort ourselves with our surgeon's reputation, and the reputation of Children's Hospital, and the relative ease of the surgery as heart surgeries go. What is not comforting, it turns out, is our faith, insofar as it gives us no guarantees of any outcome. Instead, we find again that faith is being sure of what we cannot see, and that what we cannot see is not the outcome (actually, I can imagine Moriah healthy quite vividly), but God Himself. God is the great mystery, and it seems to us that as the years go by, we understand Him less, even as we grow in our knowledge of His love for us more and more. It is a paradox. I cannot explain it--what it feels to be so completely loved, and yet so utterly unsure that Love means "rescue" everytime.

I've actually been thinking of this, too, this rescue imagery. Some of you know I once completed a lifeguarding course as a high school swim coach. One of the most startling things I learned in that course was that often, to save a drowning person, a lifeguard must push the person under the water, and hold her there until she stops struggling. Otherwise, she will take the lifeguard down with her, putting her own life and the lifeguard's in danger, and thwarting her own rescue. Lately I feel like this drowing person, wanting to take God down with me by outlining for Him exactly how I'm sure He should behave. And He is much too big for that, and too strong, and so He necessarily pushes me down under so that I stop struggling. I must surrender. Perhaps this image is too stark for many of you, but it makes sense to me, and helps me to trust God more, to see that pain can be a great gift, can even result in my own salvation.

We so appreciate your prayers as we continue to grapple with what these days may bring us, to hope that they bring a new heart for Moriah, and to walk with faith and love up a mountain that seems rather steep right now. What will we find there, on our Mount Moriah? We are not sure, but we are sure that like Abraham, like the Jews that followed later in pilgrimages up Mount Moriah to their temple, we will find a great teaching-place, and return from our pilgrimage marked by surrender, and kept in the great Love of our mysterious God.

weekend

We are spending the weekend with family--mine yesterday, Jason's today. My mom's birthday was yesterday, and Jason's dad's is today...and it's sort of last get-togethers-before-surgery. I'll post more, I hope, at the start of this week, when there is a bit more time...though our to-do list before surgery seems to be growing by the minute. We are experiencing great calm, though. Thank you, friends, for your prayers, as I really feel sustained in these days!

a word of encouragement

A friend sent this to me this morning, and I thought it so appropriate, especially since Moriah's middle name is Pearl:

"A tiny bit of sand lodges in the flesh of an oyster and becomes an irritating intrusion. Unable to expel it, the oyster covers the particle with layer after layer of a milky secretion until the irritation has become smooth, round and acceptable...Unlike other gems, pearls are drawn from something that's alive. Pearls are produced by a life that has overcome affliction, that has overcome suffering. Little wonder they are so valuable!" Pearls of Great Price by Joni Eareckson Tada

surgery will be Thursday

In the midst of a day in which Moriah and I were running between two Boston hospitals, the Cardiac Clinic at Children's called my cell phone yesterday to tell me that Moriah's heart surger will be Thursday, September 24th. We'll spend Wednesday in Pre-Op appointments (how I remember this from Orilus and Jackson's surgeries pre-transplant!) and will receive a surgery time during those appointments on Wednesday. Most likely, we'll be asked to arrive at 6:30 am and surgery will probably begin a while after (8 is my guess). It will take 5 hours, about an hour of which will be the time in which Moriah's heart will be stopped, put on a bypass machine, and then taken off the machine to restart on its own. Writing those words make me want to throw up.

Time, time, time. In typing that paragraph, I realize how often I'm typing times--dates, hours. What struck me over and over yesterday was the calm that Moriah has brought me with regard to timing. Yesterday, again, she had perfect timing. She woke up hungry when we were sitting in waiting rooms. She was awake for her most important appointments, when doctors wanted to play with her and check on her development. She slept while we drove in to the city, between the hospitals, and out of the city. I remember in Haiti, when I was living there for a month right before we brought the boys home, I attended church with another adopted mom. The pastor was preaching in English and Kreyol, and so I was able to understand when he explained that there are 2 words for time in Greek--chronos and kairos (sorry to all my seminary scholar friends if I've misspelled those). Chronos is time as we usually know it--hours, minutes, appointments, schedules. Kairos is "ordained time"--time as God creates it, providential timing. As in planned, or purposeful, or meaningful time.

I got to thinking yesterday that Moriah is a gift of kairos timing. She seems to have this way of arranging my days, even the busiest ones (as these last few have been) to be ordained and purposeful. I've not once been frustrated with her for waking up, eating, or sleeping at the "wrong time." I'm learning to trust her timing. And it gives me this general sense of hope with regards to her surgery, that because it's her, the surgery must be right "on time," coming just as she needs it most. I'm so comforted to know that God and Moriah are conspiring together (at least, I think so) to make kairos time happen.

We had the difficult conversation with Orilus and Jackson last night over dinner about if Moriah could die. We were honest with them. Words can't express how I wanted to just cry at that moment, and wish to have the power to take away all my children's pain--the pain of anticipation and worry among them. We explained to them how difficult it is for us sometimes to believe in God, to trust Him, how angry and disappointed we sometimes are because He doesn't do things the way we want. His goodness is not always our pleasure. And yet, we learned during Orilus' transplant, and will learn again, that though our faith guarantees us no outcomes, it does provide meaning to the narrative of our lives. It helps us to make connections, and to see what otherwise could be unseen and ignored. Things like kairos timing.

So we are trusting this is all purposed and purposeful, somehow. We are hurting so much, and finding again that surrendering is much, much more painful than we ever thought. We so appreciate your prayers for us as we try to trust in God's kairos.

surgery will be next week

I've been awake since 3:30 this morning, so this will be necessarily brief.

Moriah did a GREAT job today...she took sedation medication like a champ, and woke up as soon as they were done (and I mean, AS SOON...she has amazing timing, seriously. Actually, Jason told me she reminded him of a Meppelink--for those of you who don't know, this would be my mother's side of our family--who are notorious for being fast-paced, impatient, and forever ready to "move on"...this is very much my personality, so I was quite proud of her). We were relieved she handled sedation so well, and the cardiac clinic was able to get all the pictures they needed.

Briefly, the echocardiogram showed 2 holes as we had seen them originally after her birth--one between the atria (a medium-sized hole), and one between the ventricles (a very, very large hole). There's also some extra tissue in her left atrium that will need to be removed. As the cardiologist put it, she will NOT get any better than she is right now, and will only get worse, and given that she's old enough, and big enough, he'd like to proceed with surgery.

He's putting us on the surgical calendar for next week...we are waiting for his office to call us (hopefully tomorrow) with an exact date.

As I write this, I feel for the first time real nerves--butterflies, and a pit in my stomach. Most of this evening, I have felt shock, and some weird sort of denial. Perhaps the sort that helps a person to keep it together in front of doctors and in front of one's other children. Jason is feeling simliarly. It's like we both KNOW we are freaking out, but we don't actually feel it. This may sound strange, but it's a grace for now. I don't have time to freak out--Moriah has two totally unrelated appointments (GI and Down syndrome clinic) at two different Boston hospitals tomorrow. Another long, long day, and this one, I have to do alone (was so glad to have Jason with me this afternoon, as I would have been overwhelmed without him).

I began my day after carpool at Lynn beach, walking the boardwalk deliberately and slowly (in contrast to my usual I-must-lose-baby-weight pace). I stood for a while at the beach and prayed, and offered my day to God, and asked for beauty, and sanity, and peace. And mostly, I asked for awareness of His presence, the faith to believe Spirit really is all around, and Love is not far away. I felt these things today, and as I end the day now 12 hours after standing at high tide's edge, I hope again for the grace to take this week one moment at a time, the grace to forge a new life from the one I expected, and was not given. Grace to trust the Giver, and receive the gift--Moriah, and all she is teaching me about hearts and love, weakness and inner strength.

morning wake-up

Woke up this morning to Moriah's choking on lung fluid. If ever there was a cry for mercy, the one I feel this morning, though I am unable to shed any tears, is such a cry. God, have mercy on her!

So thankful the echo is today. In great darkness, I can see such light. Today, the light of ordained timing, amazing friendships (thank you, Amanda, for helping us out this afternoon), and the tender humility of a day begun in desperate prayer with Jason.

cardiology tomorrow

Quick Update:

Moriah's echocardiogram has been rescheduled to tomorrow at 2:00 pm. She will need to be sedated, so they can get good pictures of her heart. We should know thereafter if she will need heart surgery; the cardiologist agreed with me yesterday that we should move forward, and quickly, if the holes are there. He said that her brain is developed enough to handle the start-stop of the heart that will be required of her in open heart surgery, so we are able to move safely forward.

It's been a difficult day for Moriah; lots of loud, fast breathing.

Please pray for us to find a way for both Jason and I to attend the appointment tomorrow, which actually begins at 1 and probably won't finish until 6. We're mostly praying for clarity for the doctor, that what needs to be done will be obvious to him, and to all of us. We're praying for peace, especially for our little girl.

pediatrician update

So...we went to see Moriah's pediatrician today. She weighed in at 9-1/2 pounds; actually, not that much since her last weigh-in two weeks ago. The pediatrician confirmed that Moriah looks great (and she does...no blue skin or physical appearance of heart failure, though he was concerned about the symptoms I described to him). But when I called the cardiologist back to tell him her weight and the pedi's impressions he decided we should be seen soon anyway. I'm waiting now for his office to call me back (probably tomorrow morning) with Moriah's new appointment time for a sedated echocardiogram and follow-up consultation with the cardiologist. The echo will allow the doctor to see her heart again, confirm the presence of the holes, and if they are there, schedule the surgery. He agreed with me that there really is no point in waiting longer; she weighs well, she's old enough, and he understands we'd like to move forward before she gets any worse.

I have to say, I had the distinct impression a couple times today that the doctors didn't really believe me. Apparently it's really unusual for symptoms of heart failure to come on so quickly. It's strange that her rapid breathing is not all the time, just some of the time...apparently. But I'm finishing this evening with a little girl who should be eating 25-30 ounces a day, and took only 16 all day today (and let me tell you, that's only because I offered her food every single time she woke up, even if she wasn't asking for it). I sit typing at the dining room table with the monitor next to me so I can hear Moriah as she sleeps in my bedroom, and her breathing is so loud and so quick I know that something is wrong with her (earlier tonight, I counted 93 respirations in a minute, and anything over 60 is fast). So maybe it's not classic heart failure. I don't know what it is; I'm not a cardiologist. But I AM a mother, and I know when my daughter is fussier than usual, less hungry than usual, more tired than usual...and I know when my heart is breaking as I watch her. This for me is the "loudest" symptom of all.

I've been reading another book, Expecting Adam, this week. It was sent to me from my Dad and Vicki, a memoir by a mom whose son has Down syndrome. It seems this is the only way I can take in information about Down syndrome since Moriah's birth...through stories. I have yet to open one "informational" book from the library stacked in the pile in my dining room. But this book, Expecting Adam, so well describes what I think, and feel...it is like meeting a friend, and it feels hopeful and healing. It is also hilarious, and a wonderful memoir on motherhood in general. It has been a great gift in my life in this last week, bringing light when I couldn't see too well.

Also a great gift...the unexpected graces of "daily bread," and I mean that literally. We had three people bring us bread on Friday...I felt as if God were reminding me to trust for daily, moment-by-moment provision, though it was such an obvious metaphor it made me laugh aloud. Then, as I typed this blog post, a friend called about carpooling tomorrow, and prayed with me, and I felt the reminder again. Daily bread. God's presence, just when I need it. Grace for now.

2-month birthday

Yesterday was Moriah's 2-month birthday! Happy birthday to our little girl.

Thanks for all your thoughts and prayers this past week. My mom went into the hospital suddenly last week and ended up needing her gall bladder removed. She's home now, and recovering well. I'm really glad I live close enough to be able to run back and forth to see her--I'm back to Worcester again tomorrow to hang out with her at home while she rests (you ARE resting, right Mom?!) and recovers.

Moriah's doing about the same. She's on Lasix now, and continues to have episodes of quick breathing. She's eating less, and becoming more fatigued while she eats--yesterday, it took an hour for her to eat 2 ounces. I talked with her cardiologist again this morning and he asked me to take Moriah for an urgent care visit to her pediatrician today, to check her weight and to see if something else is going on (ie a flu) or if he believes that what we're seeing are signs of heart failure. If they are signs, we're going to need to see the cardiologist this week or next, and put the surgery on the calendar within the next couple weeks. He agreed with me that there's no sense in prolonging surgery if surgery is what she needs. We've waited for her to gain some age so that her brain can develop (this is helpful, he told me today, when they stop and restart her heart during surgery...gulp). She's old enough now, her brain developed enough now, for the surgery to proceed safely.

So we're waiting today...our pediatrician will weigh in this afternoon and we'll go from there.

Orilus and Jackson are doing great through all this. They have proved to be SUCH a blessing...after so much struggle in their own lives, it's so amazing to see them adjust back to school with little fanfare, to enjoy their classes, to have friends (they are now tying up our phone quite frequently, actually, talking with their friends). Orilus is playing soccer on the middle school team this year, and Jackson has signed up for drama club again--he's hoping to again do the lights for the show this year (he LOVES electronic/engineering-type stuff). Jackson's also wanting to resume piano lessons this year, too. They are absolutely adorable with Moriah--picking her up when she cries, carrying her around, feeding her, sitting with her, kissing her before they go to bed each night, running back into the house to say good-bye to her before they go somewhere...it's done my spirits good to think about what an amazing gift of healing and calm Moriah has been to them.

Thank you for your continued prayers for all of us. We feel so needy sometimes, and are so humbled by our own tears, doubts, and fears. We are grateful for love expressed through you.

sadness tonight

Feeling sad tonight. A close family member (not living in our household, but someone close to us) is in the hospital and is going to need sudden surgery this week. Also, Moriah is showing signs of heart failure in the last few days...I got so little sleep last night because I kept waking up to listen to her loud, way-too-fast breathing, and counting her respirations per minute. I called the cardiologist today and he put her on a medication to take fluid from her lungs and help her heart to function better; we hope it will improve her labored breathing. She's also not eating as much, or as efficiently. She's overtired, and fussing more...it looks like surgery is most likely, and maybe sooner than we thought. I'm not surprised by this, just exhausted and sad for all the difficult news today.

back by popular demand...

Moriah this morning!

back to school

Orilus and Jackson returned to school today, grades 6 and 5. Wow. They almost look excited. Almost. :) Moriah, on the other hand, screamed and screamed...I told the boys it was because she was so sad they were leaving...

3 hospitals today

Hospital #1: Children's. After waiting over TWO HOURS to see our cardiologist, we finally did. Luckily, he is worth the wait. He was impressed with Moriah's condition; his words were "I can't believe it." He really thought by now we'd be seeing signs of heart failure, including labored breathing and a lot of sweating. Her heart also sounds good, and her EKG went well. He explained to us that often children with Down syndrome have a lung resistance that can mask the seriousness of their heart conditions; the resistance can also postpone the symptoms of heart failure, which is, of course, dangerous. Or...her heart is growing some tissue that is closing the holes in her heart. Given the huge size of one of the holes, he said he would be shocked if this were the case, but he wants to take a look to see what's going on. So in one month, we're going back for an ultrasound (an echocardiogram) so he can see the holes. If they are still there, he's going to want to put her surgery on the calendar (because if her lungs continue their resistance, they can actually be damaged by 6 months of age, so the heart should be fixed before then). Or, if they are closing, he may decide she doesn't need surgery after all. This was huge news, as it's the first time anyone's ever mentioned that surgery may not be necessary. I know so many of you are praying for a completely healed heart, and we are so grateful...in some ways, you are standing in the gap for us when our own faith and energies for prayer and meditation are so weak. Whatever the outcome, we trust God is working into us what is good, and working through us what He must. Over and over we keep asking Him to get ultimate glory through our family, even if this means our discomfort and suffering. I'm reminded of the disciples' question, "Lord, why was this man born blind? Was it something he did?" and Jesus' loving and very difficult-to-take answer: "This was done that the work of God might be displayed in his life." We are asking God to work acceptance and surrender in us, and this is no easy or light thing, as we find again that the things that most point to God in our lives are often our weaknesses, our fears, and our suffering.

Hospital #2. We were late for our appointment at Orilus' hematologist at Mass General. A week and a half ago, Jimmy Fund had been unable to draw his annual post-transplant labs--he's a really hard stick. So we asked to try at MGH, and after waiting an unnecessary 45 minutes there today (notice a "waiting" theme here? Maybe I'm going to learn/re-learn patience as part of this ultimate surrender stuff...maybe), this incredible nurse actually got in on her very first try. We were PSYCHED. Orilus was so happy that as a joke he asked for a Barbie band-aid, and was rewarded with a Hello Kitty one, as Barbie was all gone. :) We left laughing.

Hospital #3. Moriah returned to the Cystic Fibrosis clinic for a re-do of her sweat test to see if she has CF. And this time...they got enough sweat! Results are pending; we should find out tomorrow.

We left the house at 9:30 this morning, returning with all 3 kids in tow at 5pm...a truly exhausting day.

In other news...Moriah is looking so healthy, having gained nearly a pound in a week--she's up to 8 lbs, 12 oz now. Her formula situation seems to be resolving (again); we're just praying she's not allergic to this one, too...once we get her adjusted, we'd hate for them to find blood in her stool again, and have to switch again.

Meanwhile, God's dealing with our own hearts in so many ways; sometimes I think that it is our hearts that need the most "work"--need to be enlarged, and softened, and grown--while Moriah's heart will be found to be the most perfect. I pray this is so.

I heard this today: "Happiness grows in direct proportion to our acceptance and in indirect proportion to our expectation." We are working at surrendering our expectations, laying them down, and opening our hearts to acceptance instead.