Healing and the teddy bear hat

Sophia has been healing well this week. The chemical burn on her neck from surgery is gone; the scab on her chest incision has almost fallen off completely and the redness has lessened; she is rolling over more and trying to sit up while you hold her like she was before surgery. Home health came twice this week and determined that Sophia hasn’t been gaining weight since she’s been home, so we have increased the amount we are giving her. Hopefully, that will do the trick. With her reflux, it is hard to get much more food in, but we’ll try. Sophia’s cough and spitting up have definitely returned. No one has been able to figure out why she is having problems once again after two good weeks. We go to our cardiologist on Monday, so hopefully, she’ll have some ideas.

After home health had been here the first time, on Monday, CVTS (cardio-vascular-thoracic surgery) called to have us reduce Sophia’s blood pressure medicine by half; her blood pressure had apparently been too low. I asked the pharmacist when I picked up the new med how to tell when her blood pressure was too low. She told me to watch for dizziness. After I explained that Sophia was only 7 months old, she said to watch for fussiness. Hmm… again, hard to discern in a 7 month old with an incision into her breast bone, severe reflux, and well into her attachment phase! As it turns out, once we halved her dose, she stopped making that piercing cry when she wanted something (the one I thought was the result of her lungs working better). I’m not exactly sure why that would be, but perhaps she was trying to tell us she was dizzy!

On Tuesday, I went in for a fetal echocardiogram. They didn’t see anything of concern, but couldn’t see the aortic arch – where Sophia’s aortic coarctation was. The doctor said these tests are pretty unreliable in fetuses anyway (they had been unable to see Sophia’s). So, once again, the advice is to get an echocardiogram on the baby before we leave the hospital. Apparently, such left side heart defects are often hereditary. Sophia’s coarctation (surgery #1) was not associated with her Down Syndrome (although her VSD and ASD (surgery #3) were), so they want to be sure to look for a similar heart defect in the new baby.

Many people have asked about the chances of the new baby also having Down Syndrome. There are three different ways a baby can end up with an extra 21st chromosome. Only two to three percent of babies with Down Syndrome have the kind that is inherited from a parent (a balanced carrier who isn’t affected him/herself, but has chromosomes that are stuck together). Sophia, however, has the most common kind: Nondisjunction Trisomy 21 (which accounts for 95% of the kids born with DS and is not hereditary). We do have a slightly increased risk simply because I am a year older, but the odds aren’t increased any because of Sophia’s diagnosis. The doctors seem concerned that we have not done any genetic testing – I guess their job is easier if they know. The cardiologist that did the echo said: “I guess bad luck usually only strikes once.” This really took me aback, as I don’t consider Sophia to be the result of “bad luck.” I do feel badly for her that she will encounter more struggles than most people and teasing from ignorant people, but I certainly don’t consider her bad luck. I guess some physicians are more sensitive than others…

Sophia’s teachers came to work on her eating on Tuesday. Since her reflux has returned, she gagged immediately on both the bananas and the bottle I was feeding her. Last week was a nice holiday from all that, but it looks like we are going to have to start teaching her to eat all over again. Hopefully, as her stomach grows stronger and she is able to sit up more, she’ll have less reflux and then less gagging. After struggling with eating, Sophia eventually fell asleep while I held her, but as soon as the teachers left, she was wide awake again! I think she learned this ‘possum trick in the hospital. 🙂

Saturday, we brought Sophia into the salon where John and I both get our hair cut. We thought she might be able to do something with Sophia’s hair since its getting so long. As much as we love all that hair, it does need some work. After we had our hair cut, we thought better of the idea–it would be pretty hard to cut the hair of a baby that doesn’t sit up and isn’t ready to lay on her stomach because of surgery. She’d also likely spit up since we’d just fed her. Maybe next time.

Because of a scheduling mix up, we ended up at Bakers’ Square for breakfast in between our haircuts. We sat in a sea of Wisconsin red and Gopher maroon and gold–it probably wasn’t the most germ-free place, but we didn’t anticipate the game day crowd. Sophia was amazingly patient throughout all of this. I think we are getting spoiled and are in for a surprise when her sister arrives.

Later that afternoon, we attached the winter cover to the stroller and walked up to the Asian market. Sophia loved wearing her little teddy bear hat. She’s all smiles when you put it on. It’s like she knows how cute she looks in it. There are a few photos of her in the home-sweet-home album.

She had a couple more chances to wear her hat on Sunday: one when we walked up to the Barnes and Noble (that turned out to be closed) and another when we met some friends for dinner to celebrate John’s birthday. The three hour dinner really pushed our luck. She fell asleep eating and slept until painful gas woke her up, but never did fall back asleep again. She was pretty unsettled not having her normal places to get comfortable, but was all smiles when she got to put her hat on to go home!