social butterfly

Friday:  Sophia had an early morning appointment with the endocrinologist to check on her hypothyroidism.  Her levels were normal, so that was reassuring.  The doctor seemed to think that if anything were to get out of whack at this point, it would be going back to being hypo-thyroid (more sleepy, etc.).  The docs in the hospital seemed to think that they might have to adjust her Synthroid down again (that she’d become hyper-thyroid), so whenever Sophia would be restless or not sleep much, I would assume she was getting hyper-thyroid.  But, it turns out that sometimes she just does normal baby things that aren’t related to one of her diagnoses! It’s been good to be back at work to talk to people about things their babies do/did–reminds me that there isn’t an intervention or medical strategy to address each new thing she exhibits.  It feels like you just get into this pattern of watching everything so closely.  John brought me back to reality too when I talked to him one morning and he said Sophia had been crying all morning–I asked whether we should call the doctor.  He just laughed at me–”She’s a baby; she will cry.” It just seems like whenever she acts unusually, she’s trying to tell us something…


Saturday:  Grandma came to stay with Sophia while we went to a friend’s wedding.  It was close enough to home that we could come back to feed her.  Our RN friend Ann who just retired from Fairview came over too to keep Grandma company.  Sophia was in great hands!  My friend who got married has had MS for almost 20 years and was able to walk down the aisle with her parents.  I was so impressed and was reminded that it is always important to dream big.


Sunday:  Siobhan and Aisling came by for Siobhan’s 10th birthday breakfast before she flew out to San Francisco to visit her grandparents.  Sophia has really been smiling a lot and she is beginning to enjoy imitating facial gestures.  “Auntie” Nicole also came by in the afternoon for a visit that Sophia enjoyed immensely.


Monday:  We had our first OT out patient session today. Our pediatrician thought we should do this since it was taking the school district so long to get started.  This therapist also did an evaluation of Sophia’s status, and Sophia did a good job waking up for therapy and showing off for the therapist.  Everyone seems impressed with how coordinated and strong she has grown. One of our main goals will be to get Sophia to stop the neck arching she does whenever she is laying down. We are thinking we might have to go back to the Danny sling to keep her upright in her bassinet; she keeps wiggling down and arching severely.


Tuesday:  Sophia was so good during her hour-long echocardiogram on Tuesday that the technician kept calling her “angelic.” In addition to the “echo,” Sophia had lots of other things going on yesterday, and she was such a trooper through them all.  After her 6AM breakfast (eating all 3 ounces by bottle) and a brief nap while Mom showered, she moved on to an OT/PT eval by the school district at 8:30.  She did a good job showing them what she could do–tracking voices and toys, moving her head from side to side on her tummy, smiling, etc.   She is technically evaluated as a two-month old, because of her prematurity.  This makes her more on track with some things, but still delayed, so we have plenty of things to work on.  She really focused on faces (rather than toys), so the therapists commented that she seemed like she would be very social (hard to imagine with such introverted parents).


After that she had to eat early so we could get to her echo on time.  We went back to the same department we had our fetal echocardiograms in.  We had a technician that had done several of these for Sophia before.  Unfortunately, I’d forgotten to bring the device that clamps off her G-tube once we take the venting syringe out after feedings.  I went up to the hospital floor we’d been on, recognized the first nurse I saw, and got a couple of replacements–it is such an odd feeling to feel at home in the hospital.  The technician shared that she had just lost a 10-week-old granddaughter to miscarriage.  They’d had genetic testing postmortem and determined that the baby had Turner’s syndrome.  She reiterated that most miscarriages are the result of genetic anomalies, so for Sophia to survive this far, she must be pretty strong.  


We also went to the pulmonologist.  She’d gained only 1/2 ounce since Friday, which puts her just shy of the 9 pound mark (8’15”). Since she is just 22 inches long, she is proportioned appropriately but they want her to grow as fast as possible for the next surgery.  My mom reminds me that she is still smaller than my brother was when he was born; she seems so big to me now; I can’t imagine where she would have fit inside me; at this point I don’t even remember being pregnant.  We tried to get some more answers about the cough she has before she eats.  He talked to us about using saline for her congestion (and said that the previously prescribed Albuterol would make things worse rather than better, relaxing muscles which will constrict the airway).  We opted for the home recipe (not so surprisingly, water, salt and baking soda) over the $6 marketed version.  We are supposed to put 2 1/2 tsp in her nostril (so it is enough to get to the back of her throat) and then suction it out.  He also ordered a sleep study at home to see how her oxygen levels are at night (although they were good in clinic).  Sophia then had a chest x-ray on the way out, and he’ll call with the results.  Our last stop was the pharmacy to get capsules of Prilosec (instead of the suspension (liquid) version), so we don’t have to keep going back for a refill every 9 days.  Sophia tolerated all of this amazingly well, even her car seat.  She was awake for all of this too, however, so she got really overtired.  We let her sleep through her last feeding and just put it in her tube. Papa has become so adept at changing her diaper that he didn’t even wake her.  


Wednesday: It was a pretty mellow day today and Sophia seemed to be getting caught up on sleep after her crazy day yesterday.  Although when she was awake she was in a really good mood and had a fun and smiley afternoon with Grandma.  Grandma carried her in the Baby Bjorn for the first time on our walk around the neighborhood, and as usual Sophia napped the whole time (something about being in the bjorn and the rhythm of walking really relaxes her).