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.

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. 

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! 

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!

Earthquake!

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.

Update

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.

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.