"Its not fair.  I don't want you to go to the hostible." -Lily

Its not fair.  Life isn't fair.  Isn't that what we were told growing up?  The knowledge doesn't make it any easier, just like the knowledge that somewhere someone is starving does not incline any child toward enjoyment of limp, bland veggies.  

I am feeling kind of pummeled.  

When I was seventeen my Aunt took a group of young pilgrim cousins on a pilgrimage to Santiago de Compostela.  It was a wonderful, though often trying experience.  On our pilgrimage, everyone had their own set of problems.  I doubt anyone would have said it was easy, but I also doubt that any two of us would cite the same difficulties.  Some had terrible shoes, and therefore terrible blisters.  Some had amazing shoes which they had not broken in, and therefore had terrible blisters.  Some had terrible packs.  Some had overpacked.  Some were morning people, some not.  Some needed coffee to even pretend to be human.  Some of us tended toward preachy philosophizing.  Some of us were simply too out of shape.  

I remember thinking one day, as we hiked uphill all day, "what could possibly be worse?"  The next day I learned that downhill all day is worse.  

It was a great group of people.  We were mostly Catholic, though not all.  We argued about which college was the best. (Thomas Aquinas in Santa Paula, California or St. John's in Annapolis, MD?)  We hunted for blue flowers.  We sought after fresh squeezed orange juice and the best cup of coffee in each town.  We prayed regularly, led by our fearless leader.  We read from the Magnificat magazine and from the little flowers of St. Francis.  We stopped at three in the afternoon, wherever we were, to pray the Angelus.  We tried to help each other.    

It was easy to see the best in people.  One cousin brought medical supplies, in case we should need them.  A few days in, he could be found at every stop attending to the gruesome blisters of both cousins and strangers.  (When we got to Santiago, he could not go around a corner without running into a grateful fellow pilgrim.)  One cousin could always be depended on to defuse brewing arguments, not with humor but with a sweet and calm sensibility.  Each side has merit, or if not, at least each side would refuse to yell at her.   Another could make anyone laugh.  

I am sure that we each have different memories, and I cannot be relied on for my memory.  Still, here is a favorite memory:

One particularly hard day ended rather too late for me.  I did not get as much sleep as I would have liked before I had to face the next day.  I have no idea what anyone else thought that morning, but I was tired and grumpy before I began.  It was the first morning where I just did not want to go.  Prior to that, I had started happily, and ended exhausted and in pain every day, with varying degrees of happiness or comfort in between.  I haven't got a clue what I said to my cousins, or if I said anything.  I hope no one recalls that part of that morning as clearly as I do; if they do they are sure to recall being the brunt of an unjust verbal assault, from a usually quiet cousin.   

I went out, in my still-slightly-damp-from-hand-laundering pants.  There, cheerfully charging ahead was my irrepressibly exuberant cousin.  Encouraging the stragglers, with a laugh in his eye and a slight wave of his hand, he started marching!  A booming baritone filled the damp and dewy morning. "I've been working on the railroad..."  Selfish as I am, I cannot recall (possibly did not even notice) the rest of the family's reaction to this... this what?  This unforgivable morning elation?  This ludicrous enthusiasm?  This inexplicably contagious cheer?  

I will never forget it.  At once, I felt happy.  Ashamed that I'd been feeling sorry for myself.  Glad to be in  wonderful company.  And, most astoundingly, cheerful and ready to face the day.  Nothing had really changed.  I was still very tired, and maybe a little discouraged.  I was facing another hard day.  But there he was, singing and my attitude, my outlook was entirely changed.  It was a little thing, but it marked such a dramatic change in me, that I won't ever forget it.  The song carries more emotional baggage for me than it deserves.  When I hear it (more often than you, likely.  I was a preschool teacher, and now I am a mom with young kids.)  I am cheered and encouraged again.  I think of my cousin with love and gratitude.  I think of the road to Compostela.  I think of how wonderfully happy I was.  I think of the Little Flowers of St. Francis, which I read for the first time on that road, and I think of Perfect Joy.  I think of blisters and flowers and aching legs and joy!

The lowest lows can turn into the happiest memories.  There are a lot of songs about how hard things make us stronger.  I agree, but its not enough.  Hard things often yield incredible joys.  Education. Childbirth.  That is the nature of a pilgrimage: going a great distance, even with discomfort, for some larger purpose- some joy.  Heaven even, if we consider life itself the pilgrimage.  

The past few days have been difficult.  Sarah went in for surgery on the 2nd, and was home on the 8th.  On the 10th, we took her back to the ER, after a brief consult with her pediatrician, with a mysterious blistery and spreading rash on her arm.  A frustrating few days later, we came home again on the 12th- barely in time for Mothers' day on the 13th.  Lily got sick on the Mothers' day, and is not yet well.  Today, my back is giving me incredible pain.  (And, the icing: regular hormonal discomforts returned the day before surgery.  I thought that wasn't supposed to happen until I stopped breast feeding?)  I am discouraged.

We are home now.  We have lots of follow-up visits, and we are having trouble scheduling them.  We are using gallons of Purell and Tylenol.  What measure shall I use to describe stress levels?  What could be worse?

I've been working on the railroad...

home and back again

Sarah's surgery went well. She was home earlier than expected, on Tuesday. She looks beautiful if you can look past some angry bruises. Unfortunately, Sarah got an unrelated infection. We took her to her oediatrician this morning. She called our neurosurgery team, and between all of us we decided to play it safe. So we are at the hospital again. IV antibiotics for 24 hours, and then we'll reassess. None of us have gotten even close to enough sleep in recent days. Sarah has been miserable. I will try to use the hospital computer tomorrow. I am using my kindle. Tedious typing. A real update soon. For now, we are optimistic but exhausted. We trust that God knows what He is doing, and maybe one day we will be clued in. Josh has kept us centered in prayer. Joyful feels disingenuous, but we are faithfully calm.

Surgery tomorrow

Sarah's surgery is tomorrow. We have to be at the hospital at 5:30 a.m.. If I had thought this through more carefully we would be at the Ronald McDonald house tonight. As is, we are planning to leave the house at 4. I am not excited.

I set aside important things, in these days leading up to the surgery. The house is a disaster. Instead, I pulled out my crafting skills for a few projects that felt more important than a clean house.

If Lily is going to live out of a suitcase, it is going to be her suitcase. So, I took Lily to a fabric store, where I let her pick out a few of those bundles of pre-cut quilting fabric. We needed a bunch of different prints. We cut birds and flowers and butterflies out of the various prints, and used wonder-under to adhere them to her boring suitcase. Then we decorated it with paint pens and puffy paint. It is beautiful. We made her carrying bag in the same way, for books and toys for the car, hospital room or anywhere else boring that she might find herself. She is excited about her bags.

Last time we were in the hospital, Sarah's ID bracelet chafed her skin. By the time we got home, it looked pretty bad. I had tried various things to protect her skin, while there, but none worked well. So, this time, I decided to make her a wide, snap closure, fabric bracelet, to wear snugly underneath her ID. I chose a few bright fabrics and set to work with this simple project. I was almost done when it occurred to me that I probably could have purchased something like a wrist sweat band for the job. Mine are cuter. At least that is what I am telling myself, since the job is done.

Since we are going to be in the hospital for awhile, we are going to move in. We bought a reed diffuser, so that the hospital room will not smell so hospital-like. We bought 3M hooks, so I can hang a cross in the room. I spent the day trying to decide what Sarah will want in the hospital. Definitely, her kick and play and her piano. Probably her mobile. Maybe her teddy bear. We are ready.

OK. We're not ready.

There is no way to get ready for a surgery this big. We have prayed, and solicited prayers. Lily is nervous, which means she is not sleeping well, and she is more needy than is normal. I am nervous, too, I suppose. Anyway, my temper is quicker than is normal. Josh and Sarah are both, blessedly, acting totally normal.

Dr. Keating says we should plan on being in the hospital for about ten days.

We are praying that Sarah does not need a shunt. We are praying that there are no complications. We are praying for a successful surgery and a speedy recovery. We are praying for grace, strength and peace.

Some people have asked what we need. Honestly, I do not know how to answer the question. At first I thought I should start an Amazon wish-list. I tried, but it felt disingenuous asking for the things I started listing. They are not needs. The reason I have difficulty is that we are in a fantastic hospital and taking advantage of a fantastic charity just up the road. They take very good care of us. So, if you are thinking you would like to help us out, and you are not sure how, we would be very glad if you helped the people who are helping us. Ronald McDonald House and Children's Hospital would be glad of your help.  And we do need your prayers.

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.