Monday, December 26, 2011

Happy Christmas!

Christmas is wonderful! Christmas at the hospital probably sounds gloomy, but it isn't. Not here, anyway. The kids have piles of presents from the hospital. I rearranged Sarah's room. Well, I did not do it. i requested that it be done, and i stood watch as three people who worked here did. I thought I had made a simple request. I wanted to turn the bed perpendicular to the way it was, so that i could set up a Christmas tree where Sarah could see it. I wanted a little Christmas corner, where we could sit together as a family and unwrap presents, and I wanted Sarah to be a part of it.

It was quite a thing, watching these nurses and techs maneuver the various lines and tubes. They are all hooked up to big bits of equipment, and connected to the bed. Have you ever played the game where you get a group of people to all grab hands- any hands- and then try to untangle temselves without anyone letting go? It was kind of like that. I kept apologizing. I had no idea it was going to be so difficult, They did it. They assured me it was no problem. I draped a hospital tray with a white sheet and I set up the tree on top. I piled the presents around the tree and scattered them down- not on the floor which is a dirty hospital floor- but on the sheet fell to the floor and trailed a bit.

Josh and Lily came, and we all went to Mass at the Shrine of the Immaculate heart of Mary. We were blessed with confusion about the appropriate time to arrive. We thought Mass was at 4, so we arrived at ten till. It was at five, but the seats were gone long before that. It was beautiful. The choir was good. Some children performed a pageant. Lily loved the angels!

After Mass we came back to the hospital and unwrapped presents. lily chose Sarah's presents first, She unwrapped Sarah's first doll, and she climbed on a chair so she could reach high enough without help to place the doll in Sarah's arms. It was lovely.

Josh and Lily celebrated Christmas Eve at his grandmother's house. I was not there, so I have little to note excpet that Lily asserts that the excursion keeping her out well past her bed-time was worth it.

Christmas morning was lazy here. Sarah and I slept in peacefully. Josh, on the other hand, had a very excited three year old. They did the Christmas morning thing, complete with a feast for breakfast, stockings filled brimful next to the fireplace, and mountains of presents. They did this all at my parent's house.

I did go home, to my parents' house, for Christmas dinner. It too was a feast, followed by yet another round of gifts. Aunt Lucy and Uncle Peter were there, and I had a lovely evening with only minimal worried for my Sarah. We left her in the care of a wonderful nurse.

Our house never did get decorated. That's OK. No one is there anyway. Our hospital room is decorated.

Sarah is looking well. She is still intubated. Tomorrow they are going to reevaluate, but they say they would like to give her a test to see if she is ready to extubate.

They have given Sarah a full sized hospital bed this time. She looks tiny in it! I have, thus far, resisted the growing urge to pile all her stuffed animals around her. We'll see.

The bed is cool. It does all kinds of neat things. It inflates in a rotation in one mode. That keeps her body moving, gently, while she is sleeping- sedated. That way the pressure moves around, so she does not get stiff muscles and bed sores. It also has a "Chest PT" operation. It basically thumps her back, gently but firmly, as you might if you were trying to burp a baby. That solid bounce helps her loosen some of the stuff in her lungs. It raises and lowers and inclines, as hospital beds do. It alarms if we forget to put the sides back up. It knows enough to not want to drop the baby. Its cool.

Christmas, so far, has been pretty wonderful. I have been surrounded by good people and laughter. I have enjoyed a feast. I watched my daughter thrill at one present after another, and very sweetly make sure her sister was not left out. What have I missed really, except the breakfast feast with scrapple and egg nog?

This really is the best place that you do not want to be. Maybe I will make it home before the end of Christmas. I am a Catholic, after all. We celebrate Christmas for a few weeks!

Friday, December 23, 2011

Home and back again

I knew I'd be busy when I got home. I knew that bringing a baby home when I have a child at home was going to be difficult. I even knew that I was going to get less sleep than I needed. I have joked that it is a pleasure to be facing these particular problems. These are normal. Some days have been harder than others, but things have been generally wonderful at home. As long as I set aside schedules, stress levels hover between moderate and manageable.

My calendar reminds me of the doctor's appointments. My cell phone reminds me to feed the baby every three hours. Lily reminds me that she needs to eat. My husband reminds me that I need to eat.

I have been supressing my inner-grinch. I love Christmas. The magic of the season, for me, begins with this mysterious and exciting time. Waiting, anticipating, preparing. During Advent, we read all the prophesies. Wait in joyful hope!

Jesus is coming. There is a contagious energy in the sharing of this mystery. We are not just getting ready for a giant birthday party. He is coming again, and this preparation is not merely superficial. Prepare ye the way! Deck your halls, but don't forget to prepare your heart. This season is for sharing in the mysterious, joyful, and exciting anticipation of the Messiah. A joyful celebration of His first coming is incomplete if it does not remind us to reflect on and prepare for his second coming.

As the decorations come out earlier and earlier, I choose between grinch, self-rightious moralist, and a very quiet version of myself. I try to bite my tongue, but the commercial "25 days of Christmas" undermines Christmas by erasing Advent.

"The people who walked in darkness have seen a great light. (Isaiah 9:2) ...but they ignored it because they had red and green glitter in their eyes.

Inner grinch unleashed.

So, I do not like to put up decorations until it is almost Christmas. We only took the boxes out of the attic last week. Christmas does last a few weeks, but it begins on December 25th. We have a a wreath wrapped in a purple ribbon, because Advent is a penitential season. The table cloth is pink, with a purple runner. Christmas colors won't come out until Christmas.

A twinge of regret afflicted me last night. If I was less fussy about seasons, colors and decorations, my house would be decorated. It is not. It will not be on Christmas.

Sarah is sick. Last night, Sarah got her first ride in a helicopter. They brought her to Children's hospital, in DC, again. She was admitted with pneumonia in both lungs, and RSV. She is intubated and sedated. And speaking of colors, she is a lovely shade of pink today- White and blue are well enough for Hanukkah decoraions and candles. Skin color, not so much.

i do not know how long we will be here. Last night they told me that a normal length of time to be intubated with RSV as bad as hers is about 4-5 days. And then they have to wean- both the vent settings and the sedation. Again. It is discouraging to see her like this again. But there is no arguing that she needed it. Yesterday I hope that breathing treatments would be enough, but clearly not. In truth, she is not less responsive today (sedated) than she was yesterday. Yesterday, she was so miserable, so tired, so unable to fight that my little fighter did not even yell when she got a heel prick, or when she was suctioned. Today, though sedated, she is fiercely resisting these necessary intrusions.

So we are back at Children's hospial. There is no better place in the world to hate to be.

Pandora expressed my feelings well this morning:
But the waves are calling out my name and they laugh at me
Reminding me of all the times I've tried before and failed
The waves they keep on telling me
Time and time again. 'Boy, you'll never win!'
"You'll never win"

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"

"Then I heard every creature in heaven and on earth and under the earth and on the sea, and all that is in them, singing: "To him who sits on the throne and to the Lamb be praise and honor and glory and power, for ever and ever!"" Revelation 5:13

Thursday, November 24, 2011

One of the many pleasures of parenting is the music. This morning, I woke up humming. "This little light of mine, I'm gonna let it shine!"

It is a long weekend. No one is here. The hospital is mostly empty. The cafe is closed. My doctors are not here. My nurses are not here. So far, the only familiar faces are the resident (God bless the medical residents. They never go home!) and the front desk staff. This depleted staff will not send my baby home.

"Won't let Satan 'poof' it out, I'm gonna let it shine!"

It is easy to slip into self-pity. That is not from God. God has blessed me enormously, and I will not let Satan's whispers muffle God's voice.

It is harder to be patient, as homecoming feels more imminent. Sarah looks well and seems happy. I will spend a few hours with my family having a Thanksgiving feast today. Soon we will be going home. Not today, and not as soon as I had hoped, but soon.

It is a beautiful day. Lily is singing. Sarah slept all night again, so I slept all night again. The sun is shining. The Son is my light, and He fills my life with joy.

"Let it shine, let it shine, let it shine!"

Wednesday, November 23, 2011

Well, it is the eve of Thanksgiving. I am still typing on a fussy wireless keyboard in the NICU, hoping I don't make too many egregious mistakes.

Sarah's g-tube was placed on wednesday a week ago. Last week I was discouraged when Sarah threw up, just after surgery. It set back feeding by two days. Two days is forever when you are counting down days to go home. Yesterday I was discouraged when, at the end of the day, I got sick. I do not know whether it was the republican debate or the hospital cafeteria salad that did it, but it was awful. I left without even kissing my baby goodbye. Today, I am determined to stay encouraged. It is Thanksgiving, after all. Here is what I am thankful for this year:

I have two beautiful daugters. They delight and amaze me every day.

My husband. He has kept this family focused on Christ, even, maybe especially, when things seem hardest. Sometimes when it has been a few nights since we have seen each other, I miss him awfully. I have to remember what a blessing that ache is. I love and am loved by a wonderful man.

My parents have provided food, rides, support and love. Mom put up, and kept up to date, the caring bridge page. They kept Lily singing and praying. Importantly, they provided consistency through the chaos for Lily.

Which leads me to Aunt Kathie, who came into town expecting to help me at home with a baby but instead was a full time caregiver for a three year old. Sarah and Lily's (truly) Great Aunt made the impossible possible. Figuring out DC traffic so that Lily could come in and out of the city.

Martha, Ann, Denise, Michelle, Jackie-- above and beyond.

Sarah has the best possible care. She is doing better than anyone who met her in her first week imagined. This hospital is amazing, but even before she was born she was cared for by a whole slew of caring, intelligent, amazing doctors.

We have health insurance. Really good health insurance. The tests, the surgeries, the consults, the ICU- It is a blessing to be able to consider what Sarah needs without worrying about money.

Friends. We have made new friends here. Our old friends have been amazingly supportive. We are blessed to have the company of such wonderful people.

Community. St. Paul's community embraced us with prayer and support. St. Paul's Church has had us, at times, wondering why we left Maryland. St. John's, thankfully, reminds us that there is a vibrant and warm community in VA as well. They, who do not know us yet, have reached out as well. We have felt the warmth of being wrapped and raised up in prayer.

Our neighbors are awesome.

Our faith. It is easy to forget that Faith is a gift. Ours has sustained us this year. This year, God told us, very clearly, that going through the motions is not and never was enough. He used difficulty to direct us toward Him.

Music. Lily sings and our hearts are lifted. The radio plays a song with just the message I needed in that moment. I leave Church humming. Pandora makes the hospital room a little less hospital-like. I am thankful for music.

We have our own home.

We have food.

We even have coffee.

With all of these blessings, I refuse to be discourged that the doctor cannot tell me when we can go home. We have to get the sign off from so many teams- it will not happen tomorrow. But, tomorrow is Thanksgiving, and on Thanksgiving, Sarah will be eating more than she ever has- just like the rest of us. She will be getting full amount of food the needs by tomorrow. That has been what we have been told was the final benchmark for her to go home. So, benchmarks accomplished, we go home soon. Just as soon as neurosurgery, plasic surgery, ENT, nefrology, pulmonary, general surgery and (of course) our own NICU team say she can go. Maybe cardiology too. But they will because, as Lily told me, "Sarah is fine now. So we should all go home to sleep."

Saturday, November 12, 2011


When Lily was learning to count, among the first things she counted were the silos on the farm.  There were three; three is easy.  She would count them every time we went for a walk, which was most days in good weather.  As she got better at counting, she still counted the three silos every time we walked by them.

Around that time, we took Lily to a city where she encountered towering buildings of many denominations.  "Silos!"

We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use.  They are not full of food for animals, or anything else.  They are just impressively tall buildings. 

Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.

Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore.  She had always loved her walks, so we pressed a little.  Lily was afraid of the silos.  Startled, and worried, we wondered why.  "They are going to fall down."

The world had been rocked and things seem to be falling apart.  What do we tell her?  Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?

It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase.  That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies.  Potty training regression. (check.)  Temper tantrums. (check.)  More clingy and sensitive than normal. (check.)  On and on the list went with predictable familiarity.  Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous. 

What could I say to alleviate her fear?  I wanted to gather her up and tell her that everything would be fine.  Soon, life would go back to normal. 

Sometimes silos fall. 

On Halloween Lily wanted to be a butterfly fairy.   Or a princess.  Or a butterfly princess.  Or a fairy princess.  let there be pink!  Let it sparkle!  Let there be magic and flying! Let it be beautiful, light and happy! 

I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume.  Skipping down the road, she used her magic wand to turn the cows into frogs.  She turned a puddle into a mirror.  She turned me into a pirate.  Uncle Chuck and his dog, Jethro, were threatened. 

Then we arrived at the silos. 

A meltdown?  Would I have to carry her home? 

Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers!  One purple, one pink and one blue! 

We had a family meeting on Thursday to talk about Sarah.  We have not had these meetings as often as one might like or expect; this in only the second.  At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child.  Now, the kidneys are fine; they cannot find evidence of the earlier finding.  The liver is fine; despite all evidence, she never had biliary atresia.  Her heart is fine.  Her lungs are fine.  Her brain is fine.  Our baby is going home!  One serious concern after another melted away. 

Next week, Sarah will have a surgery to place a tube in her belly.  She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home.  It could be a few days, it could be as long as a few weeks.  But we are going home soon.  Miracles abound!

Through everything, we have depended on our family, our friends and our faith.  Our relationships are stronger.  Our faith is deeper.  Our marriage is better.

We will have to create a new "normal."  But I think Lily is right.  Our silos are beautiful towers. 

Thursday, October 13, 2011

The baby is crying1

Lily told Sarah, "you need to get rid of that tube, so we can all go home."  Sarah is breathing, on her own.  We are not ready to go home, but Sarah is breathing.  I have never been so thrilled to hear a baby cry!

Monday, October 10, 2011

Wonders and signs

I cannot believe how long it has been since I have posted here!  Time flies in the hospital, believe it or not.  I kind of feel like the rest of the world should be pause, since I am not there.  Weeks fly by, and my newborn celebrated one month since her birthday on the feast of our Lady of the Rosary.

A bit of business before I forget: My mother has been keeping a caring bridge website up to date with information about little Sarah.

It amazes me how well God knows me.  It amazes me every time He gives me a boost every time I need one, and often before I have thought to ask.

When Josh and I drove away from the doctor where we first learned that there was something wrong with the pregnancy, we were silent.  We were afraid.  I did not know how to process the information, and certainly I did not know how to handle it.  We had the radio on, as always in the car, to Lily's favorite radio station which plays contemporary Christian music. The song came on I will walk by Faith, whose lyrics include the lines,

Would I believe you when you would say
Your hand will guide my every way?
Will I receive the words You say
Every moment of every day?
Well, I will walk by faith
Even when I cannot see.

As we wondered about our peanut sized child, we worried.  We worried about problems we could not see which would inevitably put us on a path we could not predict.  Would we hear His voice?  Would we listen?  It is hard to walk in faith when you really cannot see- but I guess that's what faith is.  I cried as I listened, and I knew that Josh and I would do the best we could to listen to God's voice, and to simply trust that He listens to us.

Later, when Sarah was born, the prognosis was worse than we expected- though certainly not out of the realm of what we spoken to our doctors about.  We were "prepared."  Nothing can prepare you to to hear that your child is not expected to live.  When wecame out of the meeting with the doctors, our older daughter Lily, gave us the pictures she had been working- pictures of Sarah under a rainbow.  God is in control.  We are not, but He loves us and whatever happens, He will take care of our baby.

Another time, when I had just said goodbye, again, to Lily and climbed in the car to drive away I felt that now familiar tear.  Lily ask questions.  Where are you going?  When will you be back?  Can you just bring Sarah home now?  I began to cry and for the first time wonder if I could do this.  I was tired, and getting more tired.  Lily missed home.  Sarah's emotional needs, slip down on the priority list.  How long had it been since I slept in the same house as my husband?  Can I do this?  Again, it was the radio delivering the message: a song I did not know came on and the line I heard was, "I can do all things, through Christ who gives me strength."  Chin up.  God will not give me more than I can handle.

My brother, Mark, forbid me to try and think about everything at the same time.  Just deal with one thing at a time.  I try.  Just take one step, and then another.  And when there are setbacks, try not to dwell on the regression.  Just keep taking steps forward.

Magnificat magazine quoted St. John Chysostom:
"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men.  For, if we ourselves do not succomb unrestrainedly to grief, he will qickly take away the portion of grief we feel; whereas. if we give way to excessive grief, he will permit us to become entirely possessed by it.  If we give thanks for it, we shall not be disheartened."

I thought the quote applied well to fear and I have thought of it often since I read it.  Mark's and St. John's advice, sound similar to me and I try to keep them both in mind. 

Sunday morning was particularly difficult.  We had been discussing taking the tube out and letting Sarah breathe on her own.  We were thrilled that she seemed to be making progress.  Then she ad a particularly bad day which culminated in self-extubation (she took the tube out witout the doctor's permission!)- twice!  Twice in six hours.  It was a pretty major setback.  The more than doubled her sedation to be sure it did not happen again, and we stopped talking about getting he ff the vent.  Suddenly, we were talking about a Trache.

As things started to settle, in an artficially induced calm, I realized that the peace Josh and I had been experiencing was missing.  I was not just fearful, I did not know how to hold my head up.  I realized that just in those few days of relative calm I had settled into old habits- forgetting to pray or praying short memorized and unfelt prayers.  I do not blame myself for her episode of agitation, but my lapse in faith was certainly why I had been unable to face these problems.  I told myself that I did not have to go to Church that day- my daughter's health was a valid excuse.  I am still pretty sure that I could convince most people that it was a valid excuse.  God knew, better than I, that I just did not want to face Him.  I was feeling sorry for myself and pleased to immerse myself in my problems.

I went to the hospital chapel, where there was supposed to be mass.  I knew I was too late, and I knew it.  But it soothed my conscience to make an active effort to get to Church.  The chapel was empty.  There on the table, someone had left a pile of prayer cards with the following prayer:

Nade te turbe,Nade te espante,
Todo se pasa,
Dios no se muda,
la patiencia
todo la alcanza.

Quien a Dios tienenada le falta,
solo dios basta.

Let nothing disturb thee;
Let nothing dismay thee;
All things pass: God never changes.
Patience attains
all that it strives for.
He who has God
lacks for nothing:
God alone suffices.

St. Therea of Avila

I went to Chuch, and the priest preached about missing Mass.  The Psalm was psalm 23: The Lord is my shepherd!  Again and again, just when I need to hear God's voice, He speaks.  These days, the message is not subtle.  God's grace is all I need.  His strength, not mine, will carry me.  His wisdom, not mine, must lead.

Saturday, September 24, 2011

How do you choose between your children when they both have needs, but their needs are mutually exculsive?  I only have two kids, and my second is only two weeks old.  This is a new question for me. 

Sarah is in the hospital.  She is in good hands, between the many doctors, nurses and therapists who visit her every day.  But she is recovering from major surgery, and facing still more.  It feels wrong to leave her side.

Lily too is in good hands.  She is staying at my parents' house, and my aunt with her every day.  But, she is used to having Mommy with her most of the time, and I am not.  She is used to being the center of my attention, and now she is not.  It can be hard when a new sibling comes along, under any circumstance.  Here, the new sibling came, and forced Mommy and Daddy to stay away for days at a time.  It is hard for Lily, and though I think she is bearing it well, she is certainly showing signs that she is struggling.  She has more temper tantrums and she wants to snuggle more.  She makes more demands, and her manners have deteriorated.  The heart ache, however, comes from her quickness to fall into tears.  She rarely cried before.  It is awful.  I do not want to leave her, even in the capable and loving hands of my family. 

Maybe I will take the nurses up on their many offers to put me in touch with an organization that is set up to help parents wade throught these questions with thteir children.  I have resisted it thus far.  I don't know why. 

Part of me wants to shower them both with gifts, I guess because I feel like they are getting inadequate Mommy time.  I have mostly resisted the impulse; I know it is not the right thing to do.  But Lily did get a little set of Hello Kitty chapsticks.

I took Lily tot he gift shop yesterday to pick out a present for Sarah.  (If it is from Lly, it is a lesson, not an unnecessary gift, right?)  She chose a little, blue teddy bear.  She gave it toSarah, and has, since then, every time she comes in the room, checked to make sure that Sarah can reach her teddy bear.  The nurses know it is a gift from Lily, so they tuck it in with Sarah. 

I tell myself that I should be counting my blessings.  I have been considering how long we will be in the hospital.  How long can we sustain this?  I should focus on the miracle: I am indeed planning to have both of my girls home together.  I do not know when, but I do expect it to happen. 

Thursday, September 22, 2011

Sarah's surgery went well.  She is in recovery now, and we are incredibly proud of her.

Her doctors are amazing.  We are very blessed to live close enough to this incredible hospital. 

We believe that she is a miracle, a gift and a blessing.  She is an amazing tiny little person. 

I spent my morning yesterday confused.  What kind of a mother does not feel anxiety while their two week old child goes in for a serious surgery?  I was not anxious.  I was not worried.  It was not that I was unaware of the risks of the surgery.  It was not that I did not care about the outcome.  I did trust the surgeon and his team, but I did not have an inflated confidence.  I knew she was likely to lose half, or more, of her blood.  I knew that removing pieces of bone from around her brain would be frightening under normal circumstances, and hers was complicated.  I felt no anxiety; no fear.  What kind of a mother does not experience fear?

I have asked for prayers for peace.  I can only say that, against the odds, those prayers were heard. 

The surgery went well, although she did lose a lot of blood.  The pressure was relieved, and even without any attempts at reconstruuction, she looks better.  Her forehead looks less painfully protruded and tight.  Where the fusing was most pronounced, her head has rounded out.  Her color is finally returning now- she is a pretty pink baby again!  Yesterday, after surgery, the only color I saw was in her angry little face.  I was sorry to see her so upset, but it was good to see she is still my strong fighter.  Her body was pale white- but as she demanded that someone address her headache, she kicked both legs, waved both arms, opened both eyes and yelled.  Her face turned temper tantrum red.  I tried not to laugh when she removed her turban style head covering, which protected her stiches.  I tried not to laugh, when she tried fought the wonderful nurses caring for her.  I was delighted to see my strong little fighter fighting.  Not so delighted, however, that I would resist the nurses who upped the pain meds.  She needed to rest and recover. 

Thank you for your continued prayers. 

Monday, September 19, 2011

No storm can shake my inmost calm, while to this rock I'm clinging.

I have not always, in these past few days, felt like I had the energy to pray.  I feel God's presence, and His peace.  It is the prayers of other people that have carried us.  I am astounded to learn how many people are praying for my sweet daughter, Sarah.

I have been having trouble forming my thoughts.  Not just here, but everywhere.  I have questions for my doctors, but I do not know how to express them.  When Lily asks where I am going, or when I will be home, I do not know how to answer.  When the doctor asked this morning when Sarah last ate, I knew the answer but blanked on the words.  This is one of the reasons that I have not kept up with this blog.  I have been out in the waiting room, drinking my coffee many mornings (no coffee in the rooms!!) staring at a computer screen wondering what to say.

We have wonderful doctors caring for Sarah.  They are the best.  We have been speaking mostly with the NICU team and the Neuro team in the past few days.  Sarah's brain needs surgery to relieve pressure.  There is already damage.

There is some confusion about what decisions we have discussed and how we have made decisions.  The confusion stems from my own confusion.  The NICU team, when we met on the Friday after our daughter was born, recommended that we let Sarah go peacefully.  They assured us that they could make her comfortable.  We resisted the idea, and wondered whether they were basing their recommendation on quality of life concerns or on whether or not she had a chance to live.  We did not want to send her for surgery if she could not survive it.  We do not want to give her unnecessary pain.

The neurosurgeon, also at the meeting, wanted an MRI.  We hung our hope on the MRI.  It was not the right thing to do, but we wanted to hope.  An MRI was ordered and days later we got a report.  The young doctor who met with us showed us some frightening images and told us that the recommendation was that we let Sarah go peacefully.  So, we decided to let her go.  We thought that the Neuro team had reiterated the NICU team's recommendation.  We thought the surgeons had said don't do the surgery.  Word quickly spread that we had decided to let her go- though we did not know when she would go since we refused to turn off the ventilator.

As it turns out, the young doctor was a member of the NICU team.  When I realized my mistake, I quickly insisted that we meet with the neurosurgeon that we had come to trust.  He expressed confidence that this, the first of many surgeries, had a very high chance of success.

Surgery is scheduled for this Wednesday morning at 7 am.  We expect that it will take five hours, including time to sedate and prep.  We are confident that we have made the right choice.  We are praying for our doctors' hands, Sarah's health and our own peace.  We are feeling peace.  Whatever happens, we know that Sarah is in God's hands.

It feels unnatural to be at peace now.  Then I think about how many people I have asked to pray for wisdom and peace for Josh and me.  Prayers work.  As crazy as these days have been, we are calm.  We are tired and I'd be lying if I said we were not afraid.  But we are peaceful.  Praise God!

Other small victories of recent days:
Sarah is eating more and seems to be tolerating it well.  Sarah's ventilator was weaned a few times this weekend.  Sarah has charmed everyone who has met her.  We are told that she has nurses requesting her care now.

We are asking for prayers on Wednesday.  Pray with confidence- God is listening and we have already been uplifted by your prayers.  Pray with joy- it is often through the hardest time that we come closest to our Lord.  Pray for strength for little Sarah and us.  Pray for peace for Lily.  Pray for our doctors- especially her neurosurgeon who will be performing the surgery this Wednesday.

Thursday, September 15, 2011

A week later

Sarah was whisked off to Children's hospital.

We have been here a week now.  Hundreds of offers of help and promises of prayer later, we are relatively peaceful.  A few notes on recent days:

Sarah is on a ventilator.  She cannot breath effectively on her own.  A few days ago we were assured that she was becoming more dependent on the vent every day, when they hoped to wean her off slowly.  Yesterday and today showed improvement.  We cannot say that the trend has definitively changed, but we note hopefully signs of progress.

Sarah's little heart seems to be working well.  It has to work harder than it should.  I still have questions because I do not clearly understand.  For now, it looks OK, though enlarged, and it is stable.

Sarah was started on food yesterday.  She seems to be tolerating it relatively well, but we do not know for sure yet. 

Sarah has been looking at us.  It seems to me that she has begun to focus her little eyes on things, sometimes us.  Josh took a beautiful picture of her looking right at him yesterday.  She is a normal, sweet, precious little newborn in most ways. If you put your finger in her hand, she will grab it, though her fingers are fused together, so it looks like she cannot.  If you sing to her, she cheers up.  She likes to be held and talked to and swaddled up tight in her blankets. 

Her brain was damaged by pressure.  The MRI images are a little scary.  She has spinal fluid that has not been able to drain properly caught in the front.  We will talk to neorology tomorrow and hopefully get a clearer idea about what is happening and what, if anything, can be done.

A week ago, we were faced with an enormous amount of information, most of which felt new to us.  We were asked to consider how aggressively we would like to try to find solutions.  Surgical options yet unclear, we were given the recommendation to let her go peacefully. 

Sarah was baptized.  Our wonderful pastor came all the way from Leesburg to bring her this beautiful welcome into the Church.

When Sarah was born, the whole world seemed to us to be in uproar.  There was an impressive storm which lasted for days.  The first we saw of the sun, was just after we heard from the doctors with their disturbing recomendations.  Later, Lily came to the hospital to visit.  She spent her time in the waiting room drawing pictures.  Lily brought us a beautiful picture of her baby sister, Sarah, under a rainbow.  Josh first noticed and described this sequence. 

"God said: This is the sign of the covenant that I am making between me and you and every living creature with you for all ages to come: I set my bow in the clouds to serve as a sign of the covenant between me and the earth" Genesis 9:12-13
We are praying for wisdom, peace and joy.  We are praying for Lily and Sarah.  We are praying for our doctors. 

There have been many small moments of revelation and hope.  I'd like to share them, but for now, I miss my daughter. 

Thursday, September 1, 2011

rolling with the changes

We rescheduled. Sarah CKatherine will be born on September 7, unless she chooses to come sooner.  I suppose it is about time that we pick a consonant. None of us, the doctor, my mother, myself, believes that she will wait over two weeks for the previously scheduled birth on the fourteenth.  Some have worried that we changed the date because of worries about Sarah's health.  Nothing has changed on that front; we still do not know exactly what to expect.  We still hope and pray that when she is born she will not need immediate surgery and will be allowed to stay with me, and not whisked off to Children's.

I had looked up the fourteenth. Apparently, it is the feast of the Exultation of the Cross, which is a feast day that is not only celebrated by both Catholics and Orthodox, but in fact it is celebrated on the same day. That is pretty cool, although I do not understand how our old calendar friends can share a feast day. It is a different calendar! Maybe I just did not read enough. The feast day is not, anymore, relevant to the birth of my daughter.

So what about the seventh? Apparently a whole slew of saints, but none that I know, share the day.
(St. Cloud, St. Regina, St. Grimonia, St. Eustace, St. Alcmund, St. Anastasius the Fuller, St. Augustalus, St. Tilbert, St. Carissima, St. Clodoald, St. Diuma, St. Eupsychius, St. Eustace, St. Evortius, St. Gratus, St. Faciolus, St. Hilduard, Bl. John Duckett, Bl. John Maid, St. John of Lodi, St. John of Nicomedia, Bl. Louis Maki, St. Madalberta, St. Marek Krizin, Bl. Ralph Corby, St. Memorius, St. Pamphilus.  Yes, my hippie friends, apparently there is a St. Cloud.)  

Lord, prepare us! 

Monday, August 29, 2011

My next scheduled visit with the delivering doctor was not until September 8th.  I was having contraction this weekend.  I am pretty sure the baby has dropped.  In any event, her head is not in my rib cage anymore.  For the first time in awhile, my breathing is not constricted.  Her movement seems normal.  If anything, she is moving more than she was.  I called the doctor to fill him in on the changes, and he wants to see me tomorrow (he is a fantastic doctor!).  So, tomorrow I will be at the doctor's office, bright and early in the morning.  I guess tomorrow we find out if the delivery date is going to be moved or not.  We are far enough along that Sarah could come any day.  That is not the worry.  The worry is that if I go into labor before the scheduled date, it becomes an emergency C-section, not the planned and scheduled one we had hoped for.  That matters because we want all of Sarah's doctors available for whatever she needs.  When we scheduled originally, my doctor coordinated with a whole slew of doctors from Children's.  We will know more tomorrow!

Tuesday, August 23, 2011


We are getting close.  I am conflicted.  On the most selfish, but also very real and present level, I cannot wait for Sarah to be born so that I can lie down comfortably again.  Or walk without pain. Or sleep for more than an hour without needing to use a bathroom.  On the other hand, whenever she is born we have to face what is coming.  For now, she is safe.  If there is something wrong with her heart, my body is currently doing the work for her.  Likewise with any potential respiratory or digestive troubles.  Safe is important.  As soon as she is born, she will have to do these thing herself.  Then, selfish again, I simply cannot wait to meet her.

We get to know very little before birth.  Here is what I know so far.  She responds more to Lily, her sister, than to anyone else- even me.  She ignores most people, but when Lily greets her she always responds.  Lily will come kiss my belly and say hello.  Sarah will kick and wiggle and push back against Lily's hands.  She knows her Daddy's voice.  His work schedule keeps him out late a few nights a week.  When he comes in and says goodnight to me, she starts moving.  She does not like it when Lily cries.  She either blames me, or she thinks she can get out an fix it.  I am not sure which.

Lily has been having a hard time too.  She knows that Sarah is coming.  Sometimes she is very excited.  She tells me that she loves her sister, and she kisses my belly.  Yesterday, unprompted, she told me she was ready for Sarah to come.  She proudly tells people she is a big sister.  When strangers ask, as they will, if she is going to be a big sister, she gives them more information than they ever wanted.  Yes.  She is a big sister.  Sarah is in Mommy's belly, but she will come out soon.  She is big, but not very big because she is just a baby.  She is not even as big as Allyssa.  And on and on she goes.

She does not complain about Sarah, ever.  But she is more prone to temper tantrums.  She needs more hugs and kisses.  She wants to snuggle more.   I suspect that this is mostly just normal first child worries about change than anything else.  I do think she knows that we are worried though.  She is very perceptive.

I know that consistency would be the best thing for her, but we have been bouncing back and forth a bit.  I passed out for a second a few weeks ago.  My doctor is not worried.  He said he would be if it happened more than once.  So, I am not worrying, except that I do not want to be alone- especially not alone with Lily. So, when Josh works (long hours, three days a week) I go to my parents' house.  I am comfortable there.  Lily is too.  We lived with my parents for the first two years of her life, after all.  It is a second home.  Still, back and forth is a little hard on her.

We just felt an earthquake.  It is the first I have ever experienced.  Odd.  Exciting.  Different, a little scary, definitely an act of God.  Control is a scary thing to lose, but I guess a reminder every once in awhile that we are not, and never were, in control is good.  Mini-earthquakes and babies are not that different.  God is good.

Saturday, August 13, 2011


I have been getting questions, so here is brief update on what we know about Sarah's condition.

Sarah was diagnosed, via prenatal genetic tests, with a genetic syndrome called Apert's.

Her skull is fusing, though there is some disagreement from my amazing doctors about where and how much.  She will be facing surgery in the first year of her life to allow room for the brain to grow.  It also means that she will look different.  The shape of her skull being the source of the disagreements, we do not know exactly how severe the abnormality is.  We know that her forehead is protruded- even I can see that in the imaging.  The good news is that the brain currently has room to grow.  She is not likely to need surgery until she is at least six months old.  That may sound awful, but it is a lot better than immediately after birth.  Also, since it has room to grow, the skull is not currently constraining her brain growth, so it is not being damaged now when there is little we could do.  A pediatric neurosurgeon will do the initial surgery, which will make room for the brain.  A plastic surgeon will do the reconstruction.

Her fingers, and probably toes, are fused together.  We do not know whether it is skin or bone that is fused.  Also, there is some question as to whether the thumb is fused with the fingers or whether it is separate.  This is another surgery that she will face.

Her lungs, once a source of great concern, look good now.  In the first MRI, they appeared larger than normal, indicating fluid in the lungs.  By the second MRI, that appeared to have cleared up.  The doctors are keeping a close eye.  Apert's often comes with respiratory issues, which is another reason to keep close watch.

Today we had a third echo.  The cardiologist said that the heart has not changed, which is excellent news.  He said they is some, but not much, fluid around the heart, and the heart is slightly enlarged.  That too, sounds awful but relative to possibilities it is good news.  He will examine the heart within hours of birth to make sure all is well.  The hope and expectation is that the abnormalities will take care of themselves at birth.  There is a possibility that the heart has other problems, that we cannot see until birth.

There are some other concerns.  They are, or seem anyway, more minor.  The gall bladder is not apparent in the imaging.  That, in and of itself, is not a concern.  But she will have an abdominal ultrasound soon after birth to make sure that all the essential organs are present and functioning properly.

Although the brain is not pinched or constrained, that does not mean we are home-free as far as concerns about neurological issues, which are a potential symptom of Apert's.  There could be none, or there could be severe problems.  We cannot know now, we can only pray.

Sarah is also breech.  Her head has been tightly pushed into my rib-cage.  That, along with concerns about her skull (which being fused may not be suitable for natural birth) means that I will give birth via C-section.  That is a bit of a disappointment, but I am not willing to put my at-risk daughter at-more-risk according to my whims.  Having never considered that before, I was never in a position to think about the upside.  This is going to sound silly and obvious but it is new and exciting to me.  I got to schedule the delivery, which means I know when she will be born already- unless I go into labor early!  Her scheduled birthday is Wednesday September 14!

That is, in a nutshell, everything we currently know.  At least, it is everything I can think of without going through notes.

I finally met the doctor who will be delivering her.  I am thrilled to announce that he is every bit as good as the recommending doctor's at Children's hospital said he would be.  He is warm, and has a great sense of humor. He listens to my concerns, and is very responsive.  I only with I had been working with him all along.

We have been praying for our baby's health.  Please continue to keep us in your prayers.

Friday, August 12, 2011

I read a particularly painful article recently and it has plagued my mind.  I should have known better, but curiosity (or something) got the better of me.  My newspaper, the Washington Post, ran a very sympathetic article about the late-term abortionist, Carhart.  He sees his work as missionary- a reprieve for those who desperately need his services.  And who, you might ask, are they?  They are women like me.

Women who are late in their pregnancies, and know that their children will be born with certain problems.  I was about 31 weeks when I read the article, which is far too late for most abortion providers, but not for him.  The article said that he will provide them as late as 34 weeks.  

In case you have never gone through this particular life excitement: at 31 weeks, my daughter responds to noises and my emotions.  She pushes back, when my husband puts his hand on my belly.  She flips around every which way.  (At the moment, I feel a bit like a moonbounce.)  She calms when I sing.  She moves erratically when Lily cries.  I do not know every specific of her development, but these things are impossible not to notice.  Meanwhile, I am huge.  (Imagine my surprise on the realization that my maternity clothes no longer fit.)  Sometimes I cannot catch my breath because of the way she is sitting.  Sleep is evasive.  I do not have many food cravings, but I have a few.  I have been wanting a beer.  In general, beer during pregnancy is a bad idea.  I would not have felt the slightest guilt over having one beer, except that I could not keep it down.  Reflux is not fun.  My point is that at this point in pregnancy, we are actively being Mom.  We cannot do what we want, eat what we want, look the way we want.

I am sympathetic to women who, early in their pregnancies, are frightened either by the pregnancy and its ramifications for their lives (huge!) or perhaps by early diagnosis with poor prognosis.  I know the fear.  Even now, with many of my earliest concerns alleviated, I still have fears.  Can I handle this?  Will I be able to give this child, my child, a real childhood?  She will need so much surgery, can she handle it?  Can I?  What about my older daughter?  Will she get the love and attention she deserves from me when my attentions are so focused elsewhere?  I could go on, and my list is long even though I have what is probably the most supportive family a mother could want.  My parents, siblings, Aunts and Uncles, cousins, in-laws and especially my husband, are all supportive.  They have not just supported me with good thoughts and prayers, but they have gone out of their way to think about practical ways that they can help.  This is what it means to be pro-life.

Few people have the kind of support I have.  So, I am sympathetic to the fears.  But I simply cannot imagine the pain a woman must be in that she could, at this late point, successfully convince herself that her child was not a child at all.  When it is early, and the child's impact on my life is little more than the cause frequent bouts of nausea, it is wrong but understandable that a woman could so lie to herself.  This late, however, after so many months of catering to my child, and living my life around her... well, that must be some extraordinary fear.  It breaks my heart that these women's fears are acknowledged, but not addressed.

I know that there have been recent protests in front of Carhart's practice.  I know that he decided to close his doors while the protesters were there.  I know some of the protesters.  I hope that in their earnest desire to save the children, they can be just as earnest in their desire to provide the women with the love and care that they need.  Address the pain and fear that they must already be experiencing.

Father in Heaven, I beg you to bless all women facing this crisis.  Give them the courage to find the help they need and the humility to accept it.  Shower them with your grace and comfort.  Let them find warm hearts in those who would offer help.  Protect them from judgmental anger on one side and painful ignorance of life, fear and pain on the other.  Surround them with your love, and in that love let them find peace.  Amen.

Sunday, July 17, 2011

The Good Shepherd

The LORD is my shepherd; there is nothing I lack.

The night before I had my hospital visit, a friend posted this psalm on facebook.  I was up all night throwing up.  I was more nervous than I have been even in recent memory.  During the day before, small things were setting me off.  My Aunt called, because she had found an OB who would take me even this late, and who was excellent.  Unfortunately, the doctor is about an hour's drive away from me.  My father wanted me to alert the fire and rescue squad of our situation.  If you call an ambulance they will not take you to the hospital of your choice, they will take you to the closest hospital.  There is a good chance that if Sarah is born at the local hospital, we will be almost immediately separated.  She is likely to need higher level care than they can offer.  So she'd be moved and I would stay put for the duration of my recovery.  I was on the verge of tears right at the dinner table at the thought of calling the rescue squad.  It was just more than I could think about at the moment.  I read the familiar psalm, but I could not help thinking, this is not the scripture for me tonight.  I just laid in bed, feeling scared and trying to get past my fears on my own.  I recited some familiar prayers, but I was not really praying- just reciting.  I have known for months now about the various potential health problems my daughter is facing.  I expected that the next day those potentials would stop being potential.  

In green pastures you let me graze; to safe waters you lead me; you restore my strength. You guide me along the right path for the sake of your name.

I woke the next morning before my alarm.  It was one of those mornings where I was not sure whether or not I had slept.  At 4:30 a.m. I checked my clock to make sure I had not slept through my 4:45 a.m. alarm.  I waited, wide eyed, until 4:45 before getting up and taking my shower.  We were out the door at 5:15, as we had planned.  We left Lily behind.  We had slept at my parents' house so that we could leave Lily behind.  She was asleep when we left.  I was fighting strange tears again.  This time, they were for Lily.  How could we just leave her behind.  I was completely focused on Lily most of the way to the hospital.  As soon I as was sure that my parents were awake, I checked on her.  She was still sleeping, of course.  Fear is irrational, and apparently it will cling to anything.  I was going through the motions of the intimidating day- but the fears would not leave.  They clung tight to anything except the realities of their invention.  

 Even when I walk through a dark valley, I fear no harm for you are at my side; your rod and staff give me courage.

My first appointment was with the MRI.  I was actually excited about it.  I had fallen asleep during my last MRI and, as you can imagine I desperately wanted to sleep.  Nausea ruins everything.  I did not get to enjoy my MRI nap, because as soon as I lay down, nausea hit.  They did the MRI with me lying on my side, which helps a bit.  (I should note, the technologist who did the MRI, was the same guy who had done my earlier one.  He remembered us.  It is that kind of place.  They guy who takes care of hundreds of patients, remembered us from our test two months ago.)  After the MRI, he took us to get the ultrasound.

After the ultrasound, we had a bit of downtime.  We had just over an hour before our next appointment.  It was early for lunch, but we had skipped breakfast.  So we went to the cafeteria.  At this point, we had not met with any of the doctors yet.  So, we did not have any new information yet.  Our discussions were limited to how much we liked the MRI technologist, how much we missed Lily, and how much I wanted a cup of coffee.  We ate.  We called Lily.  (She was having a fantastic day!)  We found coffee.  Eventually we made our way to our next appointment.

Our genetic counselor had once again thought about how to make our lives easier, and how to make the diagnosis make more sense.  She had tried to collect all the doctors together for a meeting with us.  That way, we would get out earlier, and also we could have a whole picture rather than a piecemeal account collected from all over the hospital.  We did not get all the doctors together, but we did get the neurosurgeon and the radiologist, as well as the genetic counselor, in the room together.  It was pretty exciting to hear them talking as a team.  The neurosurgeon will make sure that Sarah's brain has room to grow.  Since the skull is fusing, this is a serious issue.  The good news is, her brain is not pinched or cramped now.  It has room to grow for a little while.  He also made it very clear that this is a serious surgery.  Although that is not surprising, it needed to be said.  He had been speaking with such confidence about what he was going to do, and how the plastic surgeon would put things back together, it was easy to forget what we were talking about.  It is a complicated surgery with a lot of blood loss and a lot of risk.

Then we met with the plastic surgeon.  We really like him.  We arrived for the appointment early and we left late.  I know he is enormously busy.  I know how valuable his time is.  He made us feel like he had all the time in the world to answer any questions we had.  He has experience with Apert's children.  He has done the surgeries that Sarah needs before.  He had the confident competence you expect from a surgeon, but also the warmth you would expect from a pediatrician.  He will work with the neurosurgeon on any surgeries done on her skull.  He will also take care of her hands.  Her fingers are fused together.

Then we went to get an echo.  The cardiologist said that everything looks the same, which is what we had hoped.  The vessel carrying blood from the umbilical cord to her heart does not take the normal route, through the liver.  It does not have anything to slow the blood flow.  If at birth it has not caused any damage, it should not be an issue.  However, this anomaly could strain the heart.  In this case, no news was good news.  He wants one more echo before she is born.

Finally, we met with the radiologist and the genetic counselor.  We were meeting with them again because they both wanted to make sure that we had a whole picture.  Radiologist gave us all copies of her report, and she put up the MRI images on a screen for us to look at together.  She compared this MRI with the last.  She does have some concerns that she would like addressed at birth.  Little Sarah will have an abdominal ultrasound in the hours after birth.  Although there is no evidence of CHAOS anymore, she wants to keep an eye on the lungs and respiratory system.

The bottom line from our perspective, although we do not expect to need surgery in the first hours, or possibly even the first few weeks, after birth, Sarah should be born in a hospital where any of these issues can be addressed promptly.  We decided that we wanted the Children's hospital team, as it is now apparent that they are a team, close by.  We have chosen an OB in DC, and made contact.  He has worked with these doctors that we have come to trust.  He was recommended by our genetic counselor, and she called him.  He called me back and if all goes well, my first appointment with him will be this week.

 You set a table before me as my enemies watch; You anoint my head with oil; my cup overflows. Only goodness and love will pursue me all the days of my life; I will dwell in the house of the LORD for years to come.

I had so much anxiety leading up to that hospital visit; more than I had yet experienced.  Keep your head up, and keep moving.  That was what I told myself.

This morning, our pastor preached about the parable of the mustard seed.  We did not get the usual sermon about how God can do great things with tiny things.  His spin was slightly different, and exactly what I needed to hear.  He reminded us that faith is a gift from God.  We can grow in faith, as we grow in our relationship with God, of course.  We should not say that we do not have enough faith.  We should not say it because we have no sense of what God can do with our mustard seed.  But also because we know that God gives us everything we need and always enough.

God gave me faith.  It did not feel like enough.  I stumbled badly through that long day.  I leaned hard on my husband.  I asked others to pray for me.  (Yes, me!  I felt very selfish asking for prayers for myself, not for my daughter.)  I tried to listen when I knew God was speaking to me.  I tried to pray, when my fears kept me awake and made me sick.  At the end of the day, I knew God had carried me.

Even when I walk through a dark valley, I fear no harm for you are at my side; your rod and staff give me courage.

So, I did fear.  I will probably continue to have fear.  Some days are harder, and that was one of the hardest. I know that at the end of the day, God is in charge.  He will equip me to handle what comes in the way.  He loves my little girl, and He loves me.  Maybe this is what it takes to grow a mustard seed.

"I am the good shepherd. A good shepherd lays down his life for the sheep." John 10:11

Wednesday, July 13, 2011


Tomorrow, I will get up roughly four hours before I usually get up.  (That is 4 instead of 8.)   That way I can be on time for my various appointments at Children's hospital.  I have another full day of appointments at Children's.  I am nervous.  I am meeting with the various surgery teams who are likely to participate in the care of my daughter.  I am also getting another ultrasound, another MRI and another fetal echo cardiogram.  The tests will show more clearly what is wrong than they did last time, because Sarah is older.  The abstract issues we have been facing will be discussed in practical terms tomorrow.  Please, say a prayer.  Maybe prayer and exhaustion can keep my nerves at bay.

Saturday, July 9, 2011

back from vacation

Thank you.  I have gotten so much encouragement and prayer support, some from people who have never met me, from readers here.  I am sorry I have not posted in such a long time.

I just got back from our week-long vacation.  We decided we needed a real vacation, so we left our computers at home.  We brought our phones, but they are not smart phones, so no internet, and we did not carry them with us everywhere.  Cell phones can be great; you are never alone when you have a cell phone.  Miss Manners recently wrote an article that referred to them as leashes, and that is how I often think of them.  Since everyone has instant access to everyone all the time, some feel that they are entitled to immediate response from anyone.  We were comfortably disconnected.

Now returning home we are re-immersed into our busy, ever-connected life.

I spent my morning on the phone with various scheduling departments and doctor's offices.  Children's hospital made that particular chore easier.  We have to get another MRI, another Ultrasound, and another echo.  We also have to meet with the neurosurgury team and the auto-laryngology team and, of course, the genetic counselor.  I only had to talk to one person to set up all those appointments.  Our genetic counselor, ever making my life simpler, gave me a direct line to someone who could coordinate all the appointments with all the different doctors and departments.  That is no simple chore, and we are very grateful.  I am grateful that I did not have to talk to six different people to make my six different appointments.  I am grateful that I only have to go all the way to the hospital once, since she made the appointments for the same day.

Then I began the more difficult chore of finding a new OB.  I know, it is getting late.  It is getting more and more urgent that I find someone.  It is hard!

My pregnancy is getting harder too.

Little Sarah seems to think that she can get out only she can find the right place and push hard enough.  I have been trying to explain that no matter how hard she pushes her head into my rib cage, she will not get out that way.  Anyone who has ever raised a child can tell you though, children do not always listen.

I look and feel as though I am further along than I am.  Everyone who asks is surprised to find that I am not due until September.  They try to hide their surprise, presumably thinking I will be offended that they have noticed my size.  I can assure you, wearing these proportions, I am more aware than you of my size.  I am not offended in the least if you should happen to notice that, for instance, you may not have arms long enough to give me a hug.  I am, however, slightly amused when you try to hide your awareness.

I am tired.  Really, really tired.  I do not remember being this tired when I carried Lily.  Maybe my memory is colored by the joy if meeting her.  Maybe it was easier.  I know I was smaller.  (About half my maternity clothes don't fit!)  Pregnancies are unique, and this one makes me tired.

We spent half of our vacation in a family house, halfway up a mountain in New Hampshire.  I had hoped that I could climb a bit.  Not serious climbing, mind you.  I had no intention of doing any rocks or cliffs.  I had no intention of making it to the top of anything.  But some easy mountain hiking sounded wonderful.  The house has a meadow cleared in the back, so that we can enjoy a spectacular view of another mountain.  On the first day I was there, I walked, slowly, with my daughter stopping to pick wildflowers and wild strawberries about every three steps, to the end of the meadow and back to the house.  I barely made it.

It is not that I was tired, though I was.  What mother is not used to continuing to plod ahead, though she is tired?  I was in pain.  My abdominal muscles hurt.  All of them.  All around my round belly, I was in pain.  I began to wonder if I should call for help.  I would have, if I had to go much further.  I did not know whether this was my muscles protesting against carrying my ever-growing belly, or whether it was contractions.  I made it to the house and I laid down for the rest of the day.  The pain went away and did not return.  I spent most of the rest of my vacation smiling at the same view from the adirondack chairs just outside the house.

So now, home again, I am disinclined to do much walking. I understand that someone makes garments that support pregnant bellies?  I am not sure how such a thing would work, but I am going to look into it.  It would be nice to take some of the weight off my abdominal muscles.

The best part of our vacation was the company.  We spent time with family.  We spent days with cousins I have not seen in years, along with their spouses and children that I had not met.  We spent days with my parents and siblings.  We spent days with my Godmother, and her family.  It was just wonderful.  I have been blessed with an amazing family.  Seeing so many people from both sides of my family in such a relatively short time was an eye-opening delight.  What a joy to have such different people, supportive in different ways, surrounding me and my little family!  What a pleasure to glean wisdom, amusement, and advice from such varying sources!

Wednesday, June 15, 2011

Broken tools

Baby update: I do not have any new news.  I have to go to the doctor twice a month- once with the regular OB and once with the specialist.  I have to get the MRI and the heart echo.  At thirty-two weeks, I will have to go to the specialist once a week.  I am not anti-medicine or anti-doctor, but I am beginning to weary of the doctor visits.  I should try to see them as encouraging and wonderful.  We were at the specialist's office today, getting yet another ultra-sound, and Josh commented that this was likely to be a very expensive pregnancy.  All I could think was, thank God medical insurance is not like car insurance!  They cannot raise our rates.

The air conditioner is broken.  I did not know it was dead, though I knew it was unhealthy, until I tried to turn it on last week when the temperatures were reaching up and over a hundred.  My parents, happily, had an unused window unit in their garage, which is now in our bedroom window- violating the homeowner's association agreements.  I refrained from further violation, in the form of a clothesline in the backyard.  I kind of want one anyway, and this seemed like a good excuse.  I was afraid, however, of incurring the wrath of the association.  Better to quietly break one rule, broken by necessity, than to flagrantly ignore all the rules.  Our dryer is upstairs in the hall, between the bedrooms.  I will not run it in the heat.  I chose instead to bring my laundry to my parents' house, like a college student. 

In other unrelated news, last week the Church celebrated the forty-fifth annual World Communications day.  In honor of this event, my computer was attacked by a virus, our camera stopped working, and my cell phone broke.  The message couldn't be clearer: I need to update and use newer, better technology. 

The annual event is one I had never heard of before this year.  It may have slipped by me again this year as well, except that my friend wrote a book.  Matt Swaim wrote a book last year, which I thoroughly enjoyed and highly recommend, called, The Eucharist and the Rosary: Mystery, Meditation, Power, Prayer.  This year he put out another book.  Prayer in the Digital Age came out this summer, and on the eve of the Church's celebration of World Communications Day, Matt visited to the parish where I grew up to discuss the topic.  If I am honest, I was not excited about the book.  I am not incapable of using modern technologies, but neither am I one to want the latest and the best- good enough is good enough for me.  Anyway, I thought that the book was going to explain how to incorporate the cool new gadgets into prayer.  I guess I thought Matt was going to explain how to use the confession app, for instance.  I should have known better. 

Matt discussed how changing communications can affect how we view people.  He warned us to watch out for online discussions wherein we attack people verbally in ways we never would in person.  He discussed the idea that in forums, like Facebook, we present the world with a created persona, and we use that created persona to interact with other like inventions.  These profiles are not like us.  We think about how we want to be percieved, and we project that edited version of self into relationships or "friendships" with other super edited personalities.  Though forums of this kind of a lot to offer, there are grave dangers in vesting too much in this alternate reality.  We can lose our sense of self.  Or, we can lose our awareness of the real dignity of each person.  We begin to view people as collections of data, rather than unique individual made in God's image. 

The latter leads to all kinds of problems, which are readily apparent in our daily lives.  Viewed as unexceptional compilations of bits, the people we interact with have no true value to us except to impart what data we might find useful.  That is a particularly ineloquent way of expressing that one of the dangers of this mindset is utilitariansim, which is the mindset which questions the value of the life of my daughter, Sarah.  It is a rampant and vicious rejection of the sanctity of life. 

Matt did not condemn modern communications.  He insisted that kept in their proper place, they are useful.  He discussed some of the various ways that technology can be an awesome aid to our prayer lives.  Whether it be to set our phones to remind us to pray at specific times, or perhaps to inform our faith, or to gather groups to pray and inspire without geographical boundries, contemporary communication can be an awesome tool.  With that in mind, I will share the statement which Papa Bene released discussing social communications:  Truth, Proclamation and Authenticity of Life in the Digital Age.

Again, in honesty, I have not yet read Matt's second book.  I have it in hand now, and will read it soon.  If the book covers the same ideas that Matt discussed in his talk, it is indeed well worth reading. 

As I decide what can be fixed, what I can live without and what needs to be replaced, it has been useful to meditate on the role of social media in my life. 

"Believers who bear witness to their most profound convictions greatly help prevent the web from becoming an instrument which depersonalizes people, attempts to manipulate them emotionally or allows those who are powerful to monopolize the opinions of others. On the contrary, believers encourage everyone to keep alive the eternal human questions which testify to our desire for transcendence and our longing for authentic forms of life, truly worthy of being lived. "  Pope Benedict XVI

Friday, June 3, 2011


We got the results of the genetic test back yesterday.  We have a diagnosis.  Sarah has Apert's syndrome.

I am not going to lie.  I am more intimidated by the diagnosis than I anticipated.  I have been reading about the syndrome.  The genetic counselor sent me a number of resources.  Some are medical, and they describe what the diagnosis means from a medical perspective.  Some are personal.  There are a number of different websites put up either by people who have Apert's or by their families.  It is simultaneously encouraging and intimidating to read these stories.  

There seem to be a wide range of potential symptoms for people with Apert's.  

"Do you not know that your body is a temple of the holy Spirit within you, whom you have from God, and that you are not your own?"  1 Corinthians 6:19

We are each temples for the Lord.  There are a lot of wonderful teachings about how to interpret that verse.  The context of the verse is sin and immorality.  We are told here that we must avoid sin, not just because we fear Hell, but because we are temples.  We care for our bodies with the same diligence that would attend our care for His home.  

But let me take you back a step, to the old Testament verse which got me thinking in the first place:

"Then David said to his son Solomon: "Be firm and steadfast; go to work without fear or discouragement, for the LORD God, my God, is with you. He will not fail you or abandon you before you have completed all the work for the service of the house of the LORD.""  1 Chronicles 28:20

I was looking for an answer to my fears, and that is what I was given.  I have a friend who keeps reminding me that our children are not our own.  We are just stewards; they belong to God.  We do the best we can to teach, form, raise and love them.  But ultimately, the work is for the glory of God.  As we raise up our little temples, teaching them to hold God in their hearts, we are doing the work Solomon set out to do.  And God is with us as we do it.  "Go to work without fear or discouragement."  It is what I needed to hear.

Wednesday, June 1, 2011

doctor frustrations

I went to the doctor yesterday.  It was a long overdue visit with my original OB.  I have not seen him in since we first got word that perhaps there was something to worry about.  I liked him when I met him, and he had come highly recommended.  I asked a few questions, and I asked his staff questions too.  I did not grill him, as I have grilled doctors before.  I liked that his staff has been with him for years- it is a small office and the staff has been the same for aver a decade.  I am suspicious of doctors who have a high turnover rate in their office staff.  I liked his manner.  Lily liked him, and he joked with her.  I liked that he not only plasters the walls with baby pictures, as many obstetricians do, but he keeps children's books in the office.

Now, I am beginning to question whether I want to stay with him.  What I do not like about him is that he seems to send me away for every possible test.  He does not even do the glucose test in office!  I have no idea how normal this is, but I do not like it.  That alone would not put me off, but in light of everything, I am losing confidence in him.

I want a natural birth.  I want the least medical intervention necessary for a healthy birth.  I do not want drugs and IVs.  I do not want to be tied to a bed in the hospital.  Women are very different, and it seems important to me that whatever a mother wants in this respect, should be her choice.  Some doctors push Ceseareans, some epidurals, some do not push at all.   That is what I want.  So, why do I choose a doctor in a hospital, not a midwife in a birthing center?  Keeping stress low matters in pregnancy, and my choice keeps my stress low.  I want a hands-off doctor, who will intervene only when necessary, and who will know when it is necessary.

Most troubling, when I asked him about the various tests, he seemed not to me familiar with them at all.  He did not know what they showed, or even where and why I had taken them.  So I asked, just to make sure, if he had received the reports from all my other doctors.  He had to look, but he had in fact received them.  If he had said something like, "I am sorry, I received them but I have not had a chance to look at them yet," or "Yes I saw them, but to be honest, I am not a specialist and I did not understand it all," I would be OK.  As it is, it seemed to me that he was not in the slightest interested in understanding my specific case.

If the doctor is going to hand off every test, every concern, every worry, to another doctor- why am I with him?  He would not even interpret the results of the last test I got, he just read me the report written by another doctor.  He would not tell me what was going on, whether or not he was worried, what, if anything, there was to be worried about, he just sent me to a specialist.  I do not want a baby-catcher with letters after his name.  I want peace of mind. The doctor's job, from my perspective, is to understand what is going on when I cannot- and to help me deal with it.  If everything is normal, I do not need a doctor.

I will have to make a decision soon.  I chatted with the genetic counselor about all this.  She agrees that I should feel like he is directing, not just externally participating in my care.  But, she thinks I should present him with my frustrations and give him a chance to respond before I leave.  Decisions.  I guess I should count my blessings.  It is not every mother who has the luxury of choice when it comes to which doctors we want caring for us.

Sunday, May 29, 2011

The yoke is easy, the Cross is not

I have been couch hopping for a week.  Well, perhaps couch hopping is a more disagreeable depiction than reality.  I have been staying with family- on beds, but in more than one place.  We have not spent three consecutive nights in the same place.  We have had a lovely time visiting, but we are ready to go home.

We came home (is it confusing that I refer to my own house and my parents' house as home? Sorry.)  because someone in the family needed help.  It has been a wonderful, though stressful, week- but it is not my story to tell.  We cannot do much, but I can certainly help with childcare, so that is what I have been doing.

There is always something to worry about.  We can make ourselves sick with worrying.  Sometimes worries are small- I do not have the right salad dressing and my two year old might have a temper tantrum.  Sometimes they are very serious.  We face illnesses and money trouble.  These are the burdens of life, and they come in all forms:  mental, physical, financial.

"Come to me, all you who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for your selves. For my yoke is easy, and my burden light."  Matthew 11:28-30

What does it mean? How does it square with that other verse, "If anyone wishes to come after me, he must deny himself and take up his cross daily and follow me." (Luke 9:23)  

No one has ever (well, few and no one sane) argued that the life of a Christian is supposed to be easy or stress-free.  Is the verse referring to Heaven?  When we finally come to the feast, we will not have to pay or wash the dishes?  We will not have to order off-menu to satisfy the specific needs of our little ones.  (For clarity: here I am not referring to my darling two year old, but to little Sarah and her demands in utero.)  

I think not.  In Heaven those worries will be gone.  But here, we worry.  The burden does not feel light, it feels heavy.  Sometimes, very heavy.  It is not always easy to be a Christian.

I am no theologian, but I like to think that He is talking about something which we can all understand.  When we are struggling, whatever our specific struggles may be, we go to our loved ones and we talk about it.  We call it "unburdening."  Even when they cannot help, a listening ear can be enough to alleviate.  We get advice, hugs, prayers, support and sometimes just and ear or a shoulder.  Imagine the very best of friends: the one who knows what you are going to say before you say it, but still listens.  The one who could finish your sentences, but does not.  The one who always has the best advice, when you need advice but who also knows when what you need most is a hug.  Jesus offers to be that friend.  Only, He is God.  He knows me better than I know myself and He loves me more than I can imagine.  He can work miracles, and it is only through His grace and power that I have any of either.  

Ok, God. Here I am. I am giving you my burdens.  I will try to learn to hear your voice more clearly, so that I can take that easy yoke.  In you, I will find the strength and courage to carry my cross.  In you, I will rest secure in your love.  

Thursday, May 19, 2011

Calm and not Chaos

I went to the doctor again today.  I thought I was going in for a follow-up visit about the amnio.  It was also a consultation about a genetic test.  They wanted to test the cells which they obtained for the chromosomal tests (the amniocentesis) for Apert's syndrome.  Apparently they can do that.  The test is usually done after birth, and it is usually over 99% accurate.  Before birth, the test is only about 90% accurate.  As I understand it, it is kind of like a home pregnancy test in that it is pretty accurate, but not perfect, and when it is wrong it is a false negative never a false positive.  So in about two weeks, we will either have a confirmation or we will remain in diagnosis limbo, likely until birth.

The doctor I saw today is an awesome doctor.  Josh and I both had the same thought walking out of his office: "I wonder if he can be the regular OB."  (He cannot.  He only does high risk.)  He answers our questions, and makes us feel comfortable asking them.  Some doctors treat you like you cannot possibly understand, and some doctors are always in a hurry.  Setting him further above even other good doctors, his presence is calming.  He does not shy away from difficulties.  He was the first to begin to explain some of the very serious things that could be wrong.  He does not couch his explanations in propitious platitudes.  But he is calm and kind.

The most dangerous possibility currently on the table is called CHAOS.  The radiologist at Children's was the first to mention it.  She did not blow it out of proportion, but certainly wants to keep an eye on the lungs and hopefully rule out this worry.  CHAOS stands for congenital high airway obstruction syndrome.  My understanding it that it is a blockage that obstructs airflow so that the baby cannot take that all important first breath.  There are treatment options, but with serious risks.  Today, the doctor says he does not think it is likely.  By all means, we will get the follow up so that if it is an issue we have the right doctors on hand at birth.  He does not think it is CHAOS.  This is not as emphatically out of the question as trisomy is.  Nonetheless, we will take good news when we get it.  CHAOS is unlikely, and that is excellent news!

Monday, May 16, 2011

Guilt and insecurity

If I pray that my daughter does not have any of the various syndromes that the doctors are concerned about, does that mean that I love her less?  Or, conversely, if I do not pray that but instead pray for the courage to take care of my daughter in any of the many worst case scenario possibilities, do I lack faith?

Parents always second guess themselves.  We worry about everything.  Before I was a parent, I did not understand how these intelligent, loving, wonderful people could be so insecure in their decisions.  I worked in childcare, so I was on the receiving end of many questions.  I first noticed when I was seventeen.  I had been working in childcare for a year.  I was a confident, and competent, caregiver.  Parents started asking me questions about their children's development, health or behaviors.  Sometimes I knew the answers, sometimes I did not.  I was never, that year, faced with questions for which I could not find answers.  I was baffled.  Most of the parents were well educated, confident, intelligent people.  Why would they ask me, a teenager, if this behavior was normal, or if they should be worried about that rash, or if their child should know their colors by now?  

When I became a parent myself, ten years and thousands of questions later, I began to experience the same insecurities.  In my case, I worried very little about my daughter's development, but quite a bit about her health.  She was a very healthy baby, but I worried whenever she coughed.  I stayed up all night with her, the first time she had a cold, because I was afraid she might stop breathing.  I could remember thinking that all those questions, worries, and insecurities has seemed very silly and trivial to me.  Was it possible that I was less confident in caring for my own child than I had been in caring for others?  

Every decision felt very important and I probably over-analyzed most of them.  Vaccinations are the easiest example.  I read books and studies.  I consulted other parents.  I consulted a few doctors and nurses.  It was not a trivial decision, but neither did it have to be the source of frustration and worry that it was.  When I finally made a decision, having carefully listened to both sides, I worried whether I had made the right decision.  I knew how many people, whose opinions and expertise I valued, would disagree or even disapprove of my choice.  There are other examples as well.  Ask my poor husband, who had to listen to every side of every question.  

Now, I am facing different insecurities.  I can find answers, as I have before.  I can find the many and varying opinions of those whose many and varying opinions matter to me.

I have been told that difficulties are not from God.  If we tell Satan to leave our baby alone, in the name of Jesus, than he will.  He must.  I don't know how to receive that kind of advice.  Of course I believe that God can heal.  I believe in miracles, I have seen them.  I know people who have been miraculously healed by God's hand.  I also know people who have been healed, just as miraculously, by the hands of excellent doctors.  I also know people who were not healed.  If I do not pray as they tell me to pray, does that mean my faith is weak?

Sometimes I feel guilty, praying for perfect health.  Does the prayer admit that there is something less desirable about a person who has health issues?

I believe that God can heal.  I believe that God wants His people to be happy.  I believe that more than our happiness, He desires our closeness.  I do not believe that suffering has no place in Christian life.  Through suffering, we can come to be more like Christ and come to know Him better.  Suffering can teach empathy.  Suffering can teach humility.  Suffering can bring joy.  No one wants to watch the ones we love suffer, least of all, I expect, does God.  But we do, and sometimes the suffering fruits into wonderful gifts.

If my dear Sarah is born with any of the many complications my doctors are concerned about I will not love her less.  If she is not, I will not love her more.  I would be relieved that she would not have to suffer through that particular pain.  I tell myself it is like any other pain.  I hope my children do not break their bones, but I do not love them less or lose my faith if they do.  I hope that my children do not get sick, but it does not shake my faith when they do.  I hope that Sarah is healthy, and that she stays healthy.

Lord, strengthen me against my many weaknesses.  Let my heart reflect yours.  Give me the courage to face whatever comes, and the faith to place it in your hands.  Bless my tiny daughter, Sarah Catherine.  Thank you for this gift.  Help me to be a mother worthy of this gift of parenthood.

Friday, May 13, 2011

Since Love is Lord of Heaven and Earth, how can I keep from singing?

I guess I think in song.  Someone was singing that song yesterday, and it has gotten me thinking.  God is love.  He is in charge.  When I am powerless, I can either despair, or trust in God.  The first time I heard that song, I was at an abortion clinic.  I was a child.  It struck me with its message of a beautiful, faithful, strength.  As I watched pro-lifers being dragged peacefully off to jail in defense of the unborn, the song seemed singularly appropriate.  There is no evil, no power anywhere, that can stand against our Lord.
"What thought the Tempest round me roars,
I hear the Truth! It liveth!
What though the darkness round me close,
songs in the night it giveth.
No storm can shake my inmost calm,
while to that rock I'm clinging!
Since Love is Lord of Heaven and Earth,
how can I keep from singing?"
We went to Children's hospital yesterday.  We met with so many people, it was completely overwhelming.  It was a long an difficult day.  We had to get up earlier than I am used to, to be at the appointment ontime.  (DC traffic being what it is, we were late anyway.)  I had four appointments: an MRI, an ultrasound, a echo cardiogram, and genetic counseling.  The MRI was first.  (I fell asleep.  How does anyone not fall asleep?  They tuck you in to a little cacoon with as many blankets as you like, and your whole job is to lie still.  It is, admittedly, noisy, but after a few minutes I was used to the noise.)

The doctors were amazing.  Actually, the whole staff was amazing.  The technicians who actually gave me the Ultrasound and MRI were wonderful.  I had my MRI at 8 a.m..  At 2:30 p.m. I was in the cafeteria and the technician who had taken care of me came over to ask how I was doing, how everything went, and if I needed help finding my next appointment.  It was amazing to feel so human in such a large place.  I am not a chart.  I am not a number.

It was also nice to finally have some answers.  I know it has only been a few weeks.  I know that Sarah is still very small and getting the information, nevermind a diagnosis, is very difficult.  Still, it seems like it has been much longer, and I am not good with uncertainty.  Maybe that is one of the fruits God will grow from this pain; maybe I will learn how to handle uncertainty.

The doctors told the story of what they were looking at, and what concerns they had, from the top down.  The skull is a little bit misshapen.  The MRI showed a clearer picture than the Ultrasounds could, and it became clear why each doctor looking at the ultrasound had a different opinion.  It is slightly, not dramatically, different in a few different ways.  The radiologist thinks that there is fusing- that is that the bone plates have begun to knit together.  That can create problems for brain development, but so far the brain looks OK.  It is called Craniosynostosis, if you would like to look it up.

The lungs are the most serious concern.  They are larger than they should be, and the diaphragm is flat.  She, (the radiologist who was interpreting both the ultrasound and the MRI) believes that it is caused by fluid in the lungs.  That is not really a problem, unless it cannot get out.  If there is a blockage of some kind, than when the baby is born and has to breath for herself, she will not be able to.  I believe she called it CHAOS, but I will have to check on that.  Anyway, there are potential treatments, in the worst case scenario, but they are risky for both me and Sarah.

The heart echo also showed an abnormality, but it is less worrisome.  There is a vein (artery?) that brings blood from the umbilical cord to the heart.  Its normal path is through the liver, which slows blood flow.  Sarah's goes straight to her heart.  The concern is that it could stress her little heart.  It may not cause any problems at all, and it will be moot when she is born.  We follow up in one month to make sure the heart still looks healthy.

There were a few other minor things.  Taken together, the doctors are trying to find a cohesive diagnosis.  Their best guess now, which is not a diagnosis but truly a guess, is called Apert syndrome.  It does not fit perfectly, but nothing does.

The genetic counselor was very helpful.  She did not discuss abortion, as I feared.  It is really wonderful to have been so wrong about that!  She even asked if we had named our daughter yet, and thereafter referred to our daughter by her name.  When we met her, at first it seemed like she was giving a pop quiz.  We soon learned that her job was to make sure we had some understanding about what was going on.  She asked what the other doctors had told us, and whether or not we understood.  We discussed every piece of new information.  She paused every few minutes to ask if we had any questions.  When we left, knowing that we were sure to later have questions later, she gave us her contact information.  She made herself available to us, understanding that we kind of felt like deer in the headlights.  We were hit with a lot of information, some very difficult, all of it new, much of it medical, and we would need time to sort it out in our minds.

So, that is what we know.  It is good to finally feel like we understand what is causing concern.  We do not have answers, but we at least know what the doctors are seeing and why they are concerned about what they see.

We hear that knowledge is power.  Well, sometimes it is not.  Sometimes, it is just knowledge.  We know more, and we are grateful to the amazing doctors who were able to obtain and share that knowledge.  We expect to learn more still as Sarah grows.  But we are powerless to do anything for her, for now.   So, we trust in God, who is all-powerful.  We pray that He bless our tiny one.  Love is Lord of Heaven and Earth.

"O Most High, when I am afraid, in you I place my trust."
Psalm 56:4