First Day HomeGregorArrowen's first day at home has come and gone. All went smoothly except her scaring us witless at 3:00am this morning when she was apoplectic with rage over her empty stomach. Well, I guess that was the cause, as she calmed down once about 20 ml had made it down the tube. She really can work herself into a state: beet red all over, muscles tight, lungs belting out her displeasure...
more
Free At Last! Free At Last!GregorThe day we have been waiting and waiting for has finally arrived: Arrowen came home with us about 15 minutes ago. She is now crashed out on the couch enjoying a bit of free-limb sleep. However, it was not as simple as we thought as before we could take her home we had to pass one final test. The test consisted of us not going mental waiting around to be escorted from the NICU...
moreThe Latest from the CardiologistGregorThe cardiologist performed another ultrasound on Arrowen's heart to see how things were looking. Apparently the Patent Ductus Arteriosus (the open channel between the aorta and pulmonary artery) that previously (before her diagnosis of Trisomy 18) he had been intending to close through medicine, is closing itself spontaneously.The ultrasound also showed that the VSD (Ventricular Septal Defect: hole between left and right ventricles) and PVS (Pulmonary Valve Stenosis: the malformed heart valve between the right ventricle and pulmonary artery) still seem to be working together in harmony to minimize each other's effect.All seems a go for her to come home with us Friday afternoon...
more
Training DayGregorNicole and I were given our course in using and maintaining Arrowen's gastric feeding tube. She was a bit annoyed by all this as it was preempting her 3 o'clock feeding. Finally the demonstration was over and she got her food fix and spent some quality time hanging out with Mum and Dad.Her last course of antibiotics (which they put her on after the operation) is tonight, which means tomorrow is for monitoring her one last day and getting the feeding level up to 35-40 in time for us to take her home on Friday...
more
The Night OwlGregorMatt and Jen from Jamaica Plain were back through town after having seen Cambodia and spent some island time down in Koh Phangan. They are flying out in the morning back to Beantown. So, we went and had dinner with them and visited Arrowen on the way home tonight.It was about 10:40 when we got there and she was wide awake, which was great as we were able to get her out and hold her for a while...
moreRecovering WellNicoleThis morning Arrowen was alert. It has been nice to not see her cringe and gag on an oral feeding tube. She seems more comfortable now. She is getting fed through her gastric tube now...
more
Arrowen The BraveGregorLaughing in the face of adversity (okay, more realistically complaining in the face of adversity), Arrowen successfully made her way through her operation this morning.When we got into the hospital she was being quite vocal about being hungry as she was on an IV and was Nil By Mouth since last night. She was wheeled away to the OR around 8:45am and Nicole and I got to spend an hour of twisted stomachs and nerves. We got back to the NICU about half past nine and met the nurses heading off to go retrieve her...
more
Two Weeks OldGregorTwo weeks old and looking fine. Tomorrow is the big day: Arrowen's gastric feeding tube operation will be happening tomorrow (saturday) morning at 8:30am local time (2:30am in UK, 9:30pm and 6:30pm Friday East and West Coast respectively). The operation is supposed to last for about an hour, so keep Arrowen in your thoughts then, please.Feeding is up to 35 ml at a time...
more
Another DayGregorNot much to report...Everything going along pretty great...
more
Eskimo GirlGregorWhen I arrived this afternoon at the NICU, I was greeted by eskimo girl. Since she has been moved out of an incubator and the room is a chilly 80 degrees, she was wrapped up like a mummy. The first pix here are minus one of the layers she was under.Hit the 30 ml (the goal) per feeding mark today, and judging by her obvious hunger a good hour before the next feeding, that is not enough...
more