Yes, I hear that phrase at least twice a day now. Usually I am singing this around six or seven in the morning. It is just catchy enough to stay with me throughout the day. I have yet to memorize the rest of the song, which is also slightly annoying because it's that one line, over and over and over.
I'm sure someone warned me during my pregnancy about how TV time would not longer be mine, but really the only advice I remember is get sleep. The advice came in two forms. The first was before she arrives sleep as much as you can. Unfortunately, tingly hands kept me up most of the night in months five through eight. The second was nap when she naps. I fully intended to follow this, but when Lucy goes down for a nap I run around trying to get any and everything done I can while she is quiet. I had not yet done this until last Sunday arrived. Lucy woke up at six am and although we were not up late the night before, I was dead tired. I put her in her bouncy chair and the aforementioned cartoon on the tube and laid on the couch. But a number two through her onsie put a little damper in my relaxing morning. I stripped Lucy down and grabbed the scale (we still have to weigh her to ensure she is gaining weight). Lucy decided the scale would be a great place to pee. After she finished, we got a diaper on, a onsie and settled on the couch. To my surprise, I looked down and she was sound asleep. I slowly got up and walked into the bedroom, set her in her crib and for once took some advice and laid down too. It may have been the best hour and half nap I have gotten since last October. We shall see if I follow that advice again. I hope so!
We were hoping the echo would show some improvement in her pulmonary arteries. The additional diuretics, however, did not help to open the pulmonary arteries so Lucy will definitely need a catherization. This will be an overnight stay at the hospital, so the doctors can monitor her after she comes off anesthesia. The catherization will balloon the narrowing pulmonary arteries to allow more blood flow to her lungs. This should help her come off oxygen. We are trying to schedule this within the next two weeks. The catherization will delay getting the g-tube by about three weeks. We will look to schedule the g-tube placement in early December. Possible early Christmas present: a tube-free Lucy. That would be amazing!
Our meeting with Early Intervention also went well. Lucy qualified and will receive physical and speech therapy once a week. We have been working with her before our sessions start and already see amazing progress. She found her feet and is very curious.
The biggest accomplishment so far is she is no longer a supported sitter! Lucy is able to sit for about three minutes on her own. She absolutely loves this new point of view. Sometimes she will even sit up in her bouncy chair.
She has been making progress in her feeding too. We have been practicing with puree foods and prunes seem to be her favorite. As you can see below, most of the food does not make it into her mouth. We are also slowing increasing volume while decreasing time. Yesterday was the first day since July 15th that Lucy did not throw up! We hope this too can become the new pattern.
Sometimes she even helps with laundry, but she is not real good at folding.
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