Sunny day…sweeping the clouds away…

180px-zoefromsesamestreet.jpgCan you tell me how to get to Sesame Street? Zoe is looking less and less like her namesake from Sesame Street. They both, coincidentally have orange skin (or fur). Zoe didn’t exist during our Sesame street days, but thanks to my Aunt Peggy and Uncle Jim, we’ve learned all about the character Zoe and our Zoe now owns a Zoe doll. Her birthday is apparently only 2 days before our Zoe’s (March 10 (1992)). Sesame Zoe, however, is permanently 3 years old.

Sophia had two appointments on Friday at the Pediatric Specialty Clinic: Endocrine and Pulmonology. Her pulmonologist thought everything looked good and thought we should come back in September for him to prescribe another season of Synegis. He also commented that the preliminary results from the swab they took at GI on Wednesday showed staph growing, so we’ll see what the final results say and if they want to change antibiotics or not. The redness around her site has already improved, and I haven’t seen any blood in her stomach since we re-started the ulcer med. When he asked about her sleeping, I explained that we were working on overcoming my spoiling her, and he laughed and said I’d become her “transitional object.” But, he said, at least I recognized it, that many of his patient’s parents don’t see that they are the ones that caused the problem. He also said “what is the worst that could happen if she cries?”

Her endocrinologist also thought she was doing well, but said the lab results we brought in didn’t really make sense. One number (her thyroid level) was high, which meant the other number (her thyroid stimulating hormone) should be low, but it wasn’t. She wanted us to redo them there, but since the lab at our pediatrician’s office is so much better at getting Sophia’s blood drawn, she said we could have it done there this week. Depending on those results, she may adjust her Synthroid. She says that clinically Sophia is doing really well, so she is not concerned, but will see what the lab results show.

Sophia practiced her drawing again, but this time regularly insisted on having the crayon in her mouth. At one point she had a nice green streak on her upper lip.

The poor girls had to deal with me after reading what Pastor John wrote for his granddaughter Helena’s funeral (a heart baby). Sophia got a teary version of “I’ve Been Working on the Railroad” and Zoe got tears dripped on her. In case any of you want to cry too, I’ve posted it under “articles” on this site.

Siobhan and Aisling came over for another birthday celebration, and Sophia had a lot of fun seeing them again. Siobhan was able to actually pick her up and hold her. I think she likes being held by someone more her size; she really lit up with Siobhan. Zoe also liked the extra attention. She seems to be feeling better after getting rid of the garlic tainted milk she didn’t seem to like too well.

I think Zoe had her best night ever of sleeping without grunting and eating less frequently (until about 7 or so). Somehow, she has this way of being loud and eating erratically right at the time Sophia starts her morning coughing spells.

Sophia, on the other hand, had her worst night. She’d had a really sleepy day, so I thought she’d fall asleep right away. Three hours (and tears and spit up) later, she was finally asleep. I don’t know what it is with this 3 hour time frame. It had seemed to be getting better, but this weekend was another set back. I know if I had just held her for another 5 minutes during our “bedtime routine,” she would have fallen asleep, but then I’m afraid we’d get back to the point where it took her 3 hours to sleep even when being held. As I remember it, that is exactly how my babying started, I realized she fell asleep so much faster if I held her until she was on the verge of sleep. I hated to see her spending so much time just getting to sleep when we could be doing other things. I can’t figure out what to do for her; there are times when she can fall asleep quickly (she even took two short naps in her crib this weekend), but I can’t pinpoint the necessary factors. I’ve read every book out there and searched the web (where parents complain that it takes their babies 1/2 hour to fall asleep!) and have found no answers…will try periodic patting for reassurance tonight instead of singing. Not only did sleep come slowly and painfully, but shortly after she was back to sleep after an awakening, her pump alarmed because it was out of food. I was distracted doing our taxes and forgot to make more milk in time (we can’t put the whole night’s worth in the pump at once because the formula can only be unrefrigerated for 8 hours). So, I quickly made more and re-primed the tubing, while Zoe nursed. Then, the pump started alarming about 1 AM that there was no flow. I couldn’t find any problems at first. It turned out that there was a kink near her G-tube site. I didn’t take that attachment off when I refilled the bag, so I still can’t figure out how it worked fine in the beginning, but then became a problem later. I knew something was off when I put her meds in and they wanted to come back out, but I had no idea that was the cause. This meant that for the last 3 hours the machine thought she was getting food, but none (or very little) was going in! So, poor thing didn’t have any food for all that time (and had spit up a lot of what she got before the switch), but she doesn’t seem to mind as her hunger cues are all off. That also meant that in order to get her food in, we needed to go 3 hours longer in the morning. This is always a problem because when she starts waking up (once or twice before she is up for the day) she coughs to get the phlegm out that she hasn’t been able to swallow overnight (or at least that is the best explanation we’ve been given). When she coughs, she also spits up if there is anything in her stomach to spit up. It all works much better if we can get the pump to finish around 5 or 6. Sophia was also urpy during the night, which is rare. It might be related to the fact that I increased her pump speed by 1 cc per hour to try to get the extra stuff in just a little bit faster. It shouldn’t make that much difference, but it might have. I think I went through 6 different blankets that I use to put under her head so we theoretically don’t have to wash her “Kerry Kuddler” and sheets every morning. With the projectile vomit, though, I think the sheet needs a good washing after all. I hope she at least got a little bit of nutrition during the night. I’m trying to teach her to turn her head to the side when she spits up, so it doesn’t get all over her face and into her eyes (which is the saddest thing to see), but I’m not sure if she thinks I’m being mean or not. Needless, to say, she did not have a restful night, so we have to figure out some way to get her to make up some sleep, as the more well-rested she is, the easier it will be for her to sleep–what a cycle! So, as for “sunny days”, it looks beautiful out there and I’m looking forward to a walk with the girls. Tonight has to be better…


  1. Your recent pictures of the girls are adorable. They are starting to look like sisters! Those big, beautiful brown eyes and cute little chubby cheeks. Keep them coming! You must be having a ball when you take time to notice. Love, Sharon