Mom visited earlier today and Emma was doing well. They had another cuddle. (Dad’s still waiting for his turn…)
I just got in from a visit. While I was there they lowered her vent rate to 30 and her oxygen down to 23% and she continued to do well. I’m sure they’ll be more ups and downs, but it’s nice to see things going in the right direction.
After having an awesome day yesterday, Emma’s condition was more unstable today. She had more difficulty breathing and required more oxygen and a higher ventilator setting again. The docs ordered a chest x-ray this afternoon, which showed that her lungs were “wet” (due to fluid accumulation) so she was given an additional dose of Lasix (diuretic). Unfortunately, she couldn’t be taken out of her isolette and we weren’t able to do Kangaroo care/cuddling. Hopefully, she’ll be doing better tomorrow….
On a happier note, Emma is being weaned from her TPN (total parenteral nutrition – an intravenous solution containing sugar, minerals, vitamins and proteins which is usually given along with intralipids). If all goes well, by tomorrow Emma will be receiving all of the nutrients she needs from breast milk. That’s a big step forward!!
I dropped in for a late visit tonight, and Emma is doing well. They don’t like taking her out of the isolette more than once a day, so we didn’t have a cuddle, but I fed her and changed her diaper. She decided to test me out and take another poop during the process, but the nurse’s advice to keep the folded diaper under her paid off. Nice try Emma! 
Emma is having the best day she’s had in a week! In fact, the nurses felt she was stable enough to come out of the isolette and Mommy was able to hold her for over an hour this afternoon!! Hopefully Daddy will have his turn to cuddle her tonight.
Emma’s ventilator and oxygen needs have decreased considerably and although she continues to desaturate from time to time, the dips are not as low as they’ve been over the past 5 days and she manages to come out of them without any intervention. She’s continuing to tolerate her feeds well (up to 11 cc every 3 hours this afternoon) and is now at a “hefty” 915 grams (2.0 pounds)!!!
I spoke to the NICU nurse this morning, and Emma continues to do well. She’s up to 10cc per feed and her requirement for supplemental oxygen continues to be relatively low.
Emma’s having a better day! Her chest seems to be improving, and while her oxygen saturation is still dipping, she is bringing it back up herself without requiring any intervention. Emma is also requiring less supplemental oxygen, tonight she was cruising along at 25%. They have removed the stitch from her back, and the incision is healing perfectly. She’s tolerating food well, and is up to 9 cc every three hours.
When I left tonight she was having a nice comfortable snooze. After the past few days, it’s very nice to see her improving!
In an effort to help Emma breathe more easily over the past few days, the NICU team has had to steadily increase her oxygen and ventilation settings. While this is partly related to her recently diagnosed tracheal infection, we also know that she has Respiratory Distress Syndrome and Bronchopulmonary Dysplasia (see www.cheo.on.ca for more information).
In spite of the medications and frequent suctioning, she’s still having difficulties. The docs decided to replace her ET tube again today (a new one had been inserted last week too), as it appeared to be at least partially obstructed and was leaking air, making it much more difficult for her to breathe. While the procedure can’t be pleasant for Emma (though she’s sedated and given pain medication), it went very well and she tolerated it without a problem. Unfortunately, it seems that there is a leak around the new tube as well and she is still having a lot of desaturations this evening (though not so bad as yesterday or this morning). Thankfully, Emma was sleeping more peacefully tonight and her apneas were less severe (she was typically able to recover from these on her own and didn’t need an extra “boost” of oxygen to help her come out of them). Our hope now is that the new tube, combined with the antibiotics and a blood transfusion (which she received today), will start to fight off the infection and help her to get stronger.
On a happy note, Michaela came with us to visit Emma tonight and when we told her that Emma was 4 weeks old today, Michaela sang “Happy Birthday” to her and suggested we get a party hat and candles for Emma.
Soon, baby, soon….
Well, we now know for sure that Emma has an infection. The cultures from the trach aspirate came back positive today, indicating a bacterial infection is growing in her trachea (likely related to the ET tube), resulting in excess fluid accumulation in her lungs. After consulting with the Infectious Disease team again, the NICU docs have changed one of her antibiotics and discontinued another.
Unfortunately, she had several “spells” again today (after not having any last night), so her ventilator and oxygen settings remain rather high. Overall, though, Emma seemed to be a bit less agitated today and the nurses weren’t suctioning as much gunk out of her lungs, so we hope the meds have started to work and that she’ll feel better very soon.
In spite of the additional medication, an x-ray today showed that Emma’s lungs continue to “look bad” in the words of one of the docs. Fluid is still accumulating in them and she is requiring frequent suctioning (which, as you might imagine, she does not enjoy). The consensus of the NICU team is that she now has some sort of lung infection and so she was started on antibiotics late this afternoon. More cultures were taken today, so we hope to have a more definitive answer regarding the infection in a couple of days.
Otherwise, no real change since yesterday. Emma is still letting the nurses know she doesn’t appreciate the poking/prodding (by having more frequent periods of oxygen desaturation) and she became righteously annoyed when placed on her tummy this afternoon (Emma seems to prefer lying on her right side). She’s affectionately becoming known as our little “diva” amongst her NICU nurses