We are hoping Sarah has a virus. That is not a sentence I ever thought I'd think, let alone say. Sarah is sick. She was not able to keep anything down all day, not even pedialyte. She is sleeping relatively peacefully now, and I am taking advantage of her sleep and her feeding tube to sneak in a few milliliters of pedialyte at a time. There is a nasty virus going around. A lot of Sarah's cousins, Aunts and Uncles have gotten sick. We are hoping that is what Sarah has. We are hoping because the alternative is worse. When we last talked to her Neurosurgeon we set up the neurosurgery to happen before the cleft palate repair and before her fingers are separated. This surgery had to be first because it can not wait. The surgery has to be done before the pressure on her brain reaches a point where it can cause damage. According to the images, we were not at that point but we were close enough to stop waiting and schedule the surgery. We were told to watch for neurological symptoms, which would be unexpected but not out of the realm of possibility. Watch for unexplained vomiting and lethargy. We called the neurosurgeon, in case he wanted us to come in early. He said if she gets worse, not better go to the ER. We called her pediatrician, who (assuming it is a virus) wanted us to keep her hydrated. Switch to Pedialyte, since she cannot keep the milk down. So, here I sit at 2:30 a.m. hoping that my daughter has a virus while a give her a "sip" of pedialyte every ten minutes or so. She has been keeping it down since 10 p.m., when she fell asleep and I started giving tiny sips instead of giving 1 1/2 oz every two hours. Josh will take his shift soon. Please pray that this is a virus and that she heals quickly. Also, I am hoping that we do not have to postpone surgery. Obviously, she has to be healthy to get surgery, but this surgery is on a timeline to protect her. We are calm, if tired. And we are confident, as ever, that God is taking care of our Sarah.

surgery scheduled

Little Sarah is not so little anymore! She is seven months old and she is beautiful. We are so proud of our wonderful little girl. Sarah has been making all kinds of sounds. She watches when people around her talk and she tries to mimic. She especially seems to enjoy watching people singing. From afar, music delights her as it does most children. But if you are holding her and you sing, she watches this curiosity. How do we do that? I enjoy her curiosity. She reaches for things and rolls every which way to see things. She scoots and rolls. She is not very mobile yet, but she is close enough that we do not leave her alone on a bed or couch. She bats at her toys. She sings and chats and yells, sometimes. In general, though, she is a pretty quiet baby. And she is a stoic. She rarely complains, even when you know something is wrong. (When she does complain, you had better fix it quickly though. She is not patient.) She loves to be outside, as long as it is not too cold or too bright. Our beautiful, wonderful, precious little girl is facing another major surgery. On May 2nd, she will go in for another neurosurgery. The primary goal of the surgery is to relieve pressure on the brain. This time they will be doing reconstruction. In the first surgery, she was too young to do any reconstruction. They took out some bone. Her brain, relieved of pressure, rounded the shape of her head. This time, they will be doing reconstructive surgery as well. This is a major surgery. As before, we are very happy with her doctors. She is in very skilled hands which belong to very kind men. Her plastic surgeon, in particular, was very excited about the outcome of this surgery. We are too. They will be using a ventricular drain to drain some of the excess fluid. They are still hoping to avoid a shunt. The ventricular drain drains out of the body and with it they can more closely monitor the fluid and the pressure. So, less fluid means smaller. (I do not really know how much.) They will widen where her head appears pinched, above her temples. They aim to allow the brain room to grow outward, as opposed to only upward. This relief mean her head will be rounder. She has very large "soft spots." All babies have soft spots, where the plates do not touch yet. Hers are much larger. Much. They will begin to address this as well. Please pray with us that she stays healthy between now and her surgery. And, of course, for a successful surgery. Thank you so much for you prayers for our little miracle. She amazes and amuses everyone who knows her.

Clinic

Sarah had her first clinic on Tuesday.

At a clinic, children with similar complicated issues come to the hospital on the same day so they can see many of their doctors on the same day. Sarah has been recommended more than one clinic. On Tuesday, we went to a craniofacial clinic. ENT, Audiology, Speech, Dentistry, Neurosurgery, Plastics and Genetics.

When we arrived at the hospital, we had a time, but no idea where to go. We knew we were meeting with doctors all day so it seemed important to be in the right place and stay on schedule. So we asked at the security desk on arrival. They sent us to an office listed as doing a number of things, but including the craniofacial clinic. It was not the right place. They sent us to the ENT(ear, nose and throat). I explained to the receptionist at ENT that I expected to meet with lots of doctors, all day, but I was not sure where I was supposed to start. I asked if I was in the right place. Without looking, he just answered, "You'll have to come here eventually. Sign in." I tried to ask if I would miss my other appointments if I was in the wrong place. He gave me a look like I was crazy. Puzzled and a little worried, I sat down and waited for an hour or so. We worried the whole time that the reason it was taking so long was that we were not there at our scheduled time. We worried that we'd throw the whole day's schedule off.

Finally, we were brought back to a patient room where we met with a PA. She asked us a lot of questions, and then sent us away for a hearing test in Audiology.

Audiology and Speech are in the same place, so we did both while we were there. Audiology and speech were both good, but they did not offer new information. Audiology retested her ears, and reiterated that she has fluid in her ears causing hearing loss. Speech was glad to hear how well Sarah has been doing with her bottle.

It had begun to dawn on me that maybe we did not have appointments. Maybe we just had a list of doctors. We asked our friend from speech. She explained that we were where we were supposed to be. She told us that we should have gotten a packet in the mail explaining how the clinic works. We'd bounce around all morning between one set of doctors, then break for lunch, then we'd go upstairs and meet with another set of doctors, but they would come to us, so we'd just stay put. I wasn't sure if that should make me feel better or worse. It meant that it was not my fault that we waited for an hour in a waiting room. It also meant that there was a possibility we would wait similarly for each other doctor. She sent us back to ENT and we went with the confidence of people who knew where they were and where they were supposed to be.

ENT was closed for lunch. The receptionist (not the same one we had met earlier) told us to either break for lunch or try Dentistry. We went to Dentistry.

Dentistry was something of a surprise. It was not on my radar at all. Apparently, kids with Apert syndrome don't always have all their teeth. Sarah's jaw looks "full." There is not much to do now, except take note. The dentist thinks she has all her teeth. One suspects that they could x-ray and see more, but even with more information there is not much to do this early.

Back at the ENT office, we finally met with a doctor. He recommended tubes in her ears. The tubes will help the ears to drain. The will also vacuum out the fluid currently causing her hearing loss. Placing the tubes is relatively simple and it does not take very much time, but it is done under anesthesia. So, he is going to try to coordinate with Sarah's other surgeons.

After the fluid is gone, she will get another hearing test. It is possible that the tubes will resolve her hearing. If not, we will follow up with ENT to find solutions.

We did not break for lunch. We were afraid that all the waiting had not left us time for the afternoon doctors. So we grabbed a bite on the go.

The afternoon was much less stressful. We did not wait in the waiting room for long, they took us right back. We did not wait for the doctors for very long in the patient room. First someone came from psychiatry. I am glad that they are following, but the conversation was short. Sarah seems to be doing well, developmentally. She is a baby, acting like a baby.

We waited to see who would come in next. We could hear some of our favorite doctors in the hall. The neurosurgeon came in first. (Josh offered condolences since the Pats lost the Super Bowl.) But before we had gotten far, the Plastic surgeon came in. And a doctor from genetics. And then another plastic surgeon. They did not each meet with us and then converse elsewhere. They did the consult together. It was pretty awesome.

It is fun to watch a discussion on an interesting subject between the top experts on the subject. The topic that day, in that room full of brilliant minds was my daughter.

Sarah needs surgery to separate to separate her fingers, to repair her cleft palate, to protect her brain from pressure and to reconstruct. The biggest question of the day was not what needs to happen, but what is the timeline?

Sarah's next surgery is a big one. Her neurosurgeon and her plastic surgeon will work together to alleviate pressure by widening the area for her brain to grow, so that it can out not just up. (Or, as Lily put it, "Her head is tall, tall, tall!") They will use a ventricular drain to drain some of the fluid, but in a very controlled way. They are still hoping to avoid a shunt. She does have more fluid than is normal, which contributes to her head size. It is an art. Too much fluid puts pressure on the brain. The fluid is helping though, it acts like a balloon, helping to hold shape and also a cushion. The ventricular drain will help them monitor all these factors with precision. They will be grafting bone, filling in some of the holes.

After it all, her head will be rounder and look smaller and, of course, her brain will be protected. It is not scheduled yet, but it will be in mid to late April.

The experience was surreal. I left the room thinking that the surgery was no big deal. Company can skew perception. It took a few days for the magnitude of this surgery to sink in.

I still do not have the fear that I expect, so I thank you again for your prayers.

It has been a long time. I am sorry. It is not because I do not have the time, although many days I do not. It is not because I do not have the inclination. I broke my computer. I am borrowing one tonight.

Sarah and Lily are doing very well! We have fallen into a routine. I should tweak details, since we are probably going to bed too late and waking up too late. But we have a routine, and it works. Even on Josh's thirteen hour work days, we are usually doing just fine. I can keep up with my life, but I cannot catch up.

Big news! One of Sarah's doctors cleared her! Sarah does not need to consult with cardiology anymore! This is fantastic news. Cheer! So, the number of doctors we have to follow up with went from too many to count, to one less than that.

We went to a lot of appointments last week. So, here's the latest:

Audiology: Sarah did not get the normal hearing test that newborns get before leaving the hospital. Apparently, babies with a cleft palate usually fail the screening. So, we went for a much more extensive, and interesting, brain stem response test. Sarah slept in my lap with little probes all over her head. The audiologist tested each ear independently with a tiny little speaker which made tiny little noises right in the ear. The idea is that if she can hear the sound, the brain stem will respond sending little pulses, which the probes can pick up. She tested various volumes and pitches, and established that Sarah has pretty significan hearing loss in her right ear and slight hearing loss in the left. That would be useful enough information, but the test goes on.

She placed a device on the bone behind the ear, and it made a small noise. I guess it is a little bit hard to describe. The question is, is the hearing loss physical or neurological? So, the test bypasses the middle ear. Does a vibration on that bone register a response? It does. The hearing loss is physical, and therefore treatable. So, the final question is, is the hearing loss a question of anatomy or is there fluid? To test that the audiologist uses a tiny device in the ear. She explained what she was doing, and could not repeat what she said. My understanding is that she essentially used a mini-plunger (with a technical name that starts with a T) to see whether the ear drum could move. Sarah does have fluid in her ear. This is not a big surprise; she is healing from a significant respiratory virus. The ENT (Ear, Nose and Throat) doctor will have to evaluate whether or not she needs tubes placed to drain the fluid, and also whether or not there is also an anatomical issue.

Nephrology: (blood pressure & kidneys) They are not worried. They stripped her naked, weighed her, put her on crinkly, noisy paper on a patient bed and then took her blood pressure. It was high. They did not, from that informative diagnostic, treat her for high blood pressure. They let me hold her, feed her and comfort her. Then took it again. Her blood pressure is fine.

The history is that she had high blood pressure in the NICU. It was high enough that they did treat it with blood pressure medications. It came down to within a normal range when she stopped gagging all day- that is- when they took the feeding tube out of her mouth because the g-tube been surgically placed in her belly. Apparently gagging all day raises your blood pressure.

There was also a prenatal finding that had something to do with the kidneys. A duplication of some duct or other. To be honest, it was so far down on the list of early concerns, I did not fully understand. In any event, it is resolved. We follow up with nephrology in April. They ordered ultrasound imaging, but they are not concerned.

Neurology was interesting. Apparently, the rule of thumb is to expect to lose about a month developmentally with each hospitalization. So, I guess that means we should expect Sarah to have lost two months. It is a weird guage, since kids are all different anyway and presumably regression will also depend on why the child was hospitalized. Still, it is a useful note.

The neurologist explained that Sarah's anatomy makes moving her eyes difficult. Eyes sit on the out side of a cone- like if you put a beach ball in a traffic cone. The muscles which move the eye are inside the cone. Sarah's is more narrow than normal, which constricts the muscles. Also, normally eyes are imperceptibly turned in toward each other. If they were parallel, we would see double. Sarah's eyes are turned a little more toward each other than is normal, so she has to work to make her eyes see a single image. That is why when she is alert and looking at something, her eyes move in tandem. When she is tired or dazed, her eyes often cross.


Neurosurgery: Our doctor ordered a CT, but says she looks fine. He reiterated that the longer we can delay surgery the better. As has been explained before, the earlier we do these surgeries (relieving pressure on the brain, facial reconstruction) the more likely it is that they will have to be repeated. Making sure that she gets the surgeries before her brain is in any danger is the main concern, but fewer surgeries is better. We will wait as long as we can. Also, the surgeon is a Pats fan, which we figure means that he knows his stuff.

Radiology did a CT, and the radiologist who met with Josh was initially very concerned. So Josh was concerned. Apparently, she simply had not seen the prior images. The images, I can tell you having seen them myself, are pretty startling. I may ask for a specific radiologist next time, since we have relationships with two. Any technologist in the department can take the images, and the radiologist interprets them and sends the report to whichever doctor ordered them- in this case neurosurgery. After comparison, she said she did not see much change, which is good news. The neurosurgeon will get the images, and we will go from there.

Plastic surgery: Plastics have a number of projects with our little girl. They will work with neurosurgery on facial reconstruction. They will separate her fingers. They will repair her cleft palate. These things are all a little daunting to me, but the surgeon inspires confidence.

The palate will not be complicated and it has to be done before she is a year old or she will have speech delays. That makes sense. Fix the mouth before she learn to use it to make sounds. A year sounds generous to me, since babies begin to mimic younger. Her surgery will be sooner though, so I will not fuss.

Her fingers will be separated in three surgeries. The first will separate the thumb, or perhaps the thumb and the pinky. That surgery is relatively easy, and the surgeon suggested that he might coordinate with his collegue who does cleft palate surgery; likely they can be done at the same time. Fewer sedations!

Gastroenterology: Reports that she is a "feisty little mic." We like that doctor.

Her G-tube is doing what it is supposed to do. The site of the surgery looks good. She will need to upsize soon; babies grow fast. If the peg (the bit that goes into her tummy which attaches to her feeding tube) pops out, we are told we should just put it back in. No big deal. Right. We are pretending not to be intimidated by that apparently common occurrence.

She is gaining weight and looks healthy. So, the feeding is going well! She is still on exclusively breastmilk. (My sister calculated that I spend 22% of my life feeding her: 20 minutes to pump, 20 minutes to feed, every three hours.) I'd like to complain about the pumping, but I cannot in truth. I call it my baby-enforced break time. I read or play on facebook on my Kindle while I pump. (Find me on Facebook!)

All of this brings me to the appointment which was most exciting to me: Child development! I did not know what to expect. Everything in development affects everything else. With my Montessori upbringing, I have been concerned that the fusing of her fingers would inhibit learning. I worry that the palate will slow speech. I worry that because she does not move as much, her brain will not develop properly. Moving matters. Activity, or lack thereof, does affect development. Obviously, the muscles themselves grow stronger with use. Tightness can cause pain. These thing matter. But also, as you use your body, your brain develops connections. Using the arms alternately, rather than in tandem, for instance helps to create pathways in the brain. Babies naturally do things to start this development, but not if they are sedated, as she was for so long, or if their muscles are tight, as hers are.

We had a long and fascinating consulatation and we left with a list of goals and ideas to reach those goals for Sarah. We were also encouraged. She is doing very well, developmentally, all things considered. Yay!

On the list of things yet to do:
We have to get the county to evaluate her. They will be the ones to provide regular, in home, speech and physical therapy. We need it.
Opthamology. Her eyes do not close all the way. They have to make sure they eye is not being damaged, and at some point, I assume, they will test her vision (though I have no idea how.)

Scheduled:
At the end of the month, on Februaury 28, we will be taking Sarah in for a craniofacial clinic. Many of the teams we work with will all be in the same place at the same time, including plastics, ENT, and neurosurgery. I believe speech will be there too. I have never done this before, but my understanding is that we meet with many doctors during the course of a long day. Other kids with similar issues do as well. At the end of the day the doctors get together and discuss each case with one another and make a plan. They can coordinate surgeries and make recommendations with each other in mind. So, at the end of the month, I expect to have a much better sense of what the year will look like for little Sarah.

Please keep us in your prayers.

I heard the bells..

I heard the bells o Christmas day, their Old familiar carols play.

Christmas songs are familiar. The same songs every year, with occasional additions, bring joy. It is the one time of year when everyone hums, everyone knows the song. These enduring carols each capture a glimpse of Christmas; they reintroduce the story of the nativity. Or, in some cases, they glory in the celebration itself, disposing hearts toward joyful appreciation.

And mild and sweet, their words repeat with Peace on Earth, Goodwill to Men.

Like a bell, repeating, resounding, echoing sometimes loud, sometimes quiet, this carol is simple and lovely, musically. It begins with sentimentality. Soft, familiar. Beautiful. But is it real? Is there any depth to the joy of Christmas?

I thought how, as the day had come, the belfries of all Christendom had rolled along the unbroken song of peace on Earth, goodwill to men.

This year, a familiar battle played out once again in my new hometown, Leesburg, VA. Christians, every year, want to put a nativity scene on display at the courthouse. Atheists see the dislay as an assault on the separation of Church and state. The court tried to settle the dispute fairly. Last year they decided that anyone can put up a display, they just need to get a permit which are given first come first served. It seemed sensibly settled. Christians could have our nativity. Non-Christians who want to celebrate a secular Christmas could have their secular displays. An atheist display last year included a "letter from Jesus" enjoining his followers to follow him with more humilty.

But, of course, mankind being what it is, sensible solutions did not solve the problem. Christians got angry with the (relatively innocuous) displays. Atheists were not appeased- they did not want their own display, they wanted the nativity to disappear. The battle continued. And this year, the atheist struck a low blow. Will Christians still stand behind free speech? Atheists hung a skeleton, dressed as Santa, on a cross as their display. Defended, I could almost be persuaded that it held a cerain artistic value. Something about the consumerism of a secular Christmas. The sin of man put to death. conquered by the cross. It could almost be a Christian message. This delusion sharply deteriorates, however, when you bring your three year old through town. It is an assault. It is meant as an assault. We are supposed to see it, cringe, and take down the nativity.

Then in despair, I bowed my head. "There is no peace on Earth!" I said. For hate is strong, and mocks the song, of peace on Earth, goodwill to men.

Hate is strong. There is so much evil in the world. The skeleton Santa is just an ugly image, albeit an image designed to disturb the joyful, if sometimes shallow, sentimentality of this season. Perhaps it is silly to get worked up over an image when there are so many examples of real evil, real hatred.

It is easy to find examples of hate. Easier still, if we can expand what we mean by hate to evil. Evil.

People lie. Sometimes they lie at the expense of other people. Good people fall to pieces; destroyed by things like addiction or mental illness. Religious zealots attack. Atheists recoil and respond with equal or increased venom. War. Poverty. Greed. Illness.

...

I began to write this post over a week ago. When I began, I had a clear direction. Somewhere in the middle, my thoughts frayed. I could not finish it.

I felt as though I was unraveling too. Every end I could imagine fell flat. I wrote and erased about a half dozen endings. They all seemed either false or trite.

I have often used this blog to talk myself out of feeling sorry for myself. I believe with all my heart that God uses suffering to grow great fruits. I believe that we are called to be joyful.

The tagline I chose, "Rejoice always; pray without ceasing," finishes in scripture with the explanation, "for this is the will of God, in Christ Jesus, for you." Really God? This is your will? Sarah was only home for three weeks! I could not sleep. I could not go home. I was second guessing my parenting. If I had noticed sooner...insisted we stay in the ER the first time... If I had not taken my daughter out of the house... Could I cave protected her from this? Protected all of us? I was feeling very sorry for myself.

On Wednesday, Sarah seemed to be improving in many real ways. Most notably, she was breathing on her own. We had moved out of the ICU and into a "family centered care" wing. There, I was primarily responsible for Sarah. But, I could not feed her. Only the nurses were allowed to use the machines, and it takes a machine to feed her. I could not give her any medicine. I could hold her, play with her, burp her and bathe her. No one came into the room except by request. I had no idea how long we were going to be there. Days? Weeks? The doctors would only vaguely answer, as they always do, "It depends on Sarah."

I was lonely. I told myself I deserved a bit of self pity and I indulged. I spent Christmas, New Year's and my wedding anniversary in the hospital.

Sarah cried all day. As often as she was awake, she cried. It broke my heart. I began to feel like I was not strong enough. Or maybe, just not attune enough to my daughter. I was something not enough. I would get her to sleep, and then some unsuspecting hospital employee would come in. They knew me. They knew I was friendly and wanted to chat.

Imagine being the brunt of an enraged, probably unhinged Momma because you dared to say, "Hello!" This did not help my social depravation.

Its OK, I told myself. Sarah usually sleeps all night. She often sleeps from midnight till ten. I talked to my husband on the phone. He reassured my, with his calm faith, that God was in control.

At three in the morning, Sarah was still crying. I was crying too. I put her in her crib and went to my bathroom and cried. But, not wanting Sarah to be alone in her misery, and certainly not wanting to be caught crying, I composed myself. My body, if not my emotions, were under control. I went back out. Too tired to sing, or hold my daughter, I decided to read a light-hearted murder mystery and pat her back.

The first page I read, the hero of the book (not an overtly Christian book, just light brain candy) preached, "cast all your anxiety on Him, because He cares for you."

I must be very dense, that the Lord always chooses such obvious messages and vehicles for His message. I closed my book and I prayed. I tried to set aside my anxiety. I calmed. Sarah calmed. By four, we were both asleep.

We were woken at seven. I was livid, but I bit my tongue. I had to know what the plan for Sarah was. As it turns out, at seven, they took her off all oxygen support. They knew she did not need it awake, but to go home, they had to see her in a deep sleep, and not struggling to get enough oxygen through her blood. Fortunately, since she had been awake so long, she slept easily all day. We were discharged that night!

Then pealed the bells, more loud and deep, "God is not dead, nor does He sleep; the wrong shall fail, the right prevail, with peace on Earth, goodwill to men."

Nothing huge changed. There is still evil throughout the world, and indeed much close to home.

But if we listen, and sometimes even when we don't, the almighty, eternal, all-powerful God speaks. The evil cannot win.

God is listening. He is watching. He loves us. Our Father, ever alert to our needs, cares more deeply than we can imagine. Our pain pains Him. He is more aware, and more sensitive to hate.

And we, His people, are the bells carrying His message, ever the same. He is eternal and eternally good. He has conquered the night. His is the victory, and the evil of this world- deeply painful and impossible to ignore- is not eternal.

Till, ringing singing, on its way, the world revolved from night to day. A voice, a chime, a chant sublime, of peace on earth, good will to men!

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!

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