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!