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A Better Day

I am night shift #1 tonight, meaning that Silas and I hang out in the main living area from 10p-3am while Derek sleeps in the bedroom. Then Derek gets up from 3a-8a while I sleep. With only one baby at home and both of us on parental leave, this system is working great for us. Five hours seems like a ton of sleep after the first couple of nights of us all awake and figuring things out. Obviously when Zoe comes home we will figure out a new system, but for right now things are running pretty smoothly at home (see Exhibit A).


When we went to the hospital yesterday, Zoe had been moved out of the incubator and into a bassinet. This is another big step in the right direction, because this means she is maintaining her own body temperature without a problem! She was wearing the cutest yellow knitted hat and sweater and covered with a matching blanket that a volunteer donated to the NICU. Being a knitter myself, this made me so happy!



Zoe continues to have intermittent breathing "spells" the last couple of days and the medical staff refer to this as stridor, which is indicative of airway obstruction. Our awesome nurse, Kerri, noticed that her tongue sometimes goes to the roof of her mouth when she is sleeping and this is a result of her prematurity. However, they also wanted to rule out any structural abnormalities of her airway. This involved the ORL team coming over from Children's and putting a camera down her throat. They found some evidence of reflux, which could be one cause of the stridor. They also took some films and there is an inconclusive indication of minor airway narrowing. They can do a more invasive follow-up test at Children's if the spells continue, but for right now they will just keep monitoring her.

She also had an ultrasound of her head yesterday to rule out any further concerns of neurological abnormalities. The test results thankfully came back NORMAL today, so we were very relieved in this regard.

We met with someone from occupational health today who did some basic observations of Zoe during a diaper change, clothes change and feeding. She will meet with us again tomorrow to talk about how to do tummy time with a preemie, etc. We will be getting a referral for early intervention since Zoe spent time on the NICU, so we look forward to having home visits to make sure she gets back on track in the coming weeks and months. All of the things we are learning we can also apply to Silas, because in many regards he flew under the NICU radar but he is having many of the same preemie issues as his sister. We have been so happy with the excellent level of care and support we have received at BW during this stressful time.

Nothing has changed with the level of Zoe's feeding behavior in the last couple of days, and this continues to be the primary reason for her extended stay in the hospital. She might take two bottles in a row 100% by mouth, but then not wake up enough for the next two feedings and have to receive everything via feeding tube. She really seems to just need some time in this regard, but Derek and I remain positive that she will turn a corner very soon.

Zoe again pulled out her feeding tube today (she is a strong little girl with a mind of her own!) so we seized the opportunity for a photo shoot! She has sensitive skin just like me, so the redness on her right cheek is a result of the tape that holds the feeding tube in place.



We decided to stop by the lab after our visit with Zoe today, so we snuggled her back in bed with her warm little hat before we left.


And Daddy kissed her goodbye.

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