A lot has happened since I last posted!
My parents came to visit and helped us out tremendously during the week from Magnus's birthday until Thanksgiving. While they kept him entertained and helped us clean the house, we were able to work, take care of the mountain of household tasks that had been accumulating, and train our new nanny! Yes, we finally have childcare again, thank god. I think the two weeks prior to my parents' arrival were the most exhausting of my life, between trying to work full-time, take care of a baby full-time, and having to deal with all the new medications and equipment (for example, I had to call the home health care supply company EIGHT TIMES in order to get Tender Grips, the little bandages that adhere his oxygen cannula to his face).
Magnus had a great birthday. He received many excellent gifts, and now has an enviable stash of toys and books, and plenty of new clothes, too. In addition, my sister initiated, and my mother facilitated, a birthday card campaign for Magnus; we received nearly 100 birthday cards for him! Some of them were from people Iggy and I have never met, and others were from family members, neighbors, old friends, and even two of my former elementary school teachers! My mom and I spent the afternoon of Magnus's birthday reading through those cards with tears streaming down our faces. Even though I know objectively that we have a lot of wonderful support, caring for a sick baby can feel isolating on a day to day basis. I don't see my friends very often anymore; in fact, since Magnus had his G-tube surgery in July, Iggy and I have been unable to go out together at night, since we haven't had a babysitter who knows how to work his feeding pump. So getting all those cards was kind of my It's a Wonderful Life moment, when you realize that you're not alone, and that in fact you have more people rooting for you than you ever could have imagined.
We had a party for Magnus's birthday on Sunday. Thanks to Grandma and Grandpa's babysitting service, I even had a chance to make cupcakes, which other people seemed to enjoy, although Magnus was not too enthused about them. Many friends came, bringing yet more gifts, and Magnus basked in the glow of his many admirers. That was by far the most people he'd ever been around, but he did very well, and only seemed slightly overwhelmed when everybody started singing "Happy Birthday" to him while flashbulbs went off all around him.
Another exciting development that happened this week is that we began the weaning process. The plan is to transition Magnus off of breastmilk and onto Pediasure. I have some mixed feelings about this, as Pediasure is a highly processed mixture of cow's milk, fats and sugars, and has a long list of multisyllabic ingredients. I had asked the dietician who works with his GI doctors about more natural alternatives, and she said that while there were children's formulas made from more natural ingredients, they didn't taste very good, and so were generally only recommended for kids who are 100% tube fed. So, in the end, my desire for a more natural diet for him is outweighed by my desire to no longer spend 2 hours a day pumping breastmilk, and my desire for him to eat by mouth. The dietician suggested that we transition him onto the Pediasure by starting with a bottle that was 1/4 Pediasure and 3/4 breastmilk. To be conservative, I started him with a bottle that was 1/6 Pediasure and 5/6 milk. And then he took one swig of it, made a horrible face, and then instantly vomited. It was, to say the least, disheartening, but we kept trying, and now he seems to tolerate that mixture well, so today I'm bumping him up to 1/3 Pediasure and 2/3 milk. Wish us luck. Anyway, I guess this gives us more impetus to step up our efforts to encourage him to eat solid food, which we've kind of been slacking on of late.
My parents left early in the morning on Thanksgiving day, and we had some friends over for dinner that afternoon. Last year on Thanksgiving, Magnus was 2 days out from his Norwood, which meant that he was in the ICU, completely sedated, "breathing" with the help of a ventilator, his chest was full of drainage tubes and pacer wires, and his sternal incision was still open because he was too puffy for it to be closed. So I wasn't able to hold him, but I was able to look right into his chest and see his heart beating. Iggy couldn't handle seeing him in that state, and since seeing Iggy so upset made it impossible for me to hold it together, we mutually agreed that it was best for him to just spend the day at home getting Magnus's room ready for his eventual homecoming while I stayed by myself at the hospital. So, even though we've had a rough month, this Thanksgiving was dramatically better than last year's, and we didn't have to look too far to find plenty to be thankful for.
11 months ago