This could be a long post. We finally came home on August 2, 2013. Final Stats:
98 Days in NICU
Birth Date: April 27, 2013
Due Date: July 23, 2013
Discharge Date: August 2nd, 2013
Birth Weight: 650g, 1lb, 70z
Discharge Weight: 2430g, 5lb and 5oz
Birth Height: 12 inches
Discharge Height: 17 inches
Complications:
- Chronic Lung Disease - 35 days on vent, 40 days on CPAP, 7 Days on High Flow Cannula, 10 days on low flow cannula, 4 days off all support, tired out and so went home on 100ml of oxygen through low flow cannula
- 10-15 blood transfusions
- 3 rounds of antibiotics
- Low Thyroid so put on Synthroid
- No brain bleed, no infections, no NEC, no ROP (stage 0 both eyes)
In the last couple of weeks, the final push seemed unbearable. Hoyt and I traded off staying at the hospital for the last 2 weeks, working on getting little bit to gain weight, take all his feeds by bottle and get ready to go home.
There were a couple of setbacks at the end...they took him off the vent for a couple of days and thought he was going to be able to make it home without any support but after 4 days he got really tired from the feeding and growing and started to struggle a bit so they put him back on the low flow cannula and I was devastated. I thought we were never going home but the next day the doctor assured me that we were still set for the next week going home but we should plan to go home on a monitor and oxygen. That was fine with me. It just meant that he could slow down a bit, get bigger and in time get off everything when he was absolutely 100% better.
Then, we were all set to go home on Wednesday. We had been staying at the hospital for two weeks. Switching sleeping there and that was a nightmare. No sleep whatsoever. The nurses check vitals every 3 hours and that wakes up Miles and then it takes him an hour to get back to sleep and then takes you another 30 minutes after that and so you get an hour here and there. Needless to say we were really tired and frustrated that we were still in the hospital. Then on Wednesday morning the doctor said that they couldn't let him leave because he was having bradycardia episodes (drops in his heart rate). He had been having these for weeks but they had not studies them to find out what the problem was which was around feeding - he was having reflux and was not fully coordinated with his feedings, so he would not breathe and eat too much and then drop his heart rate.
So, they put him on a special monitor that monitors the drops in heart rates to make sure that there was nothing out of the ordinary i.e. not feeding/reflux related. He had to be on this monitor for 48 hours before we could go home. He sailed through that.
