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.)
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.