The past few weeks have been great! Busy, but great! We thought we understood what it would be like to have him home, but we didn't realize just how much work it takes to be a NICU nurse. We appreciate all of the nurses (over 40!) who took care of Eli!
We were given SO much information as we were discharged. Eli has a lot of doctors to follow up with in the coming weeks (cardiologist, pulmonologist, pediatrician, occupational therapist, etc.) and there are medications and supplements he will be on for the next little while. Eli also came home on oxygen so that has been a challenge. It feels like we can't move him around very much because he is always tethered to his oxygen tank. Eli also has a monitor that is constantly reading his blood oxygen saturation and heart rate. In a way it's kind of nice to know something will beep at me in case anything is wrong, but it also beeps when nothing is wrong like if he kicks his feet or if I pick him up. It's like the boy who cried wolf: it will start beeping in the middle of the night and either Jason and I will get up to go check on Eli and as soon as we are out of bed, it stops beeping. But beeps or not, we are happy to have our little boy home safe and sound with us!
About 2 1/2 weeks ago (April 2), I went in to see Eli and ended up staying at the hospital for the next 5 days. The doctors really wanted us to be able to take him home, but Eli was still choking on his bottles. He wasn't having this problem when breastfeeding, just bottle feeding. So, the doctors decided to do a trial run: have Jason and I spend five days/nights in the hospital with Eli to see if he could gain enough weight just by breastfeeding (most preemies can't gain weight without having a few bottles of fortified breast milk.) During those five days, we did everything the nurses had been doing for the past three months: changed his diapers, fed him, took his temperature, gave his medication, changed and monitored his pulse oximeter, and monitored his oxygen. It was so fun being with him 24/7; the only hard thing was that his alert time was from about 2 am to 6 am . . . and we were all together in one tiny room. We basically got zero sleep over those five days and I don't think I left that room more than four times. Once the five days were up, Eli had a net weight gain of 4oz and he didn't have any bradycardia episodes so we were free to go! Eli is the first baby in the entire 12 years that the NICU has been open to go home solely breastfeeding. Everyone was impressed.
It was bittersweet leaving the hospital that day. Bitter because we built such a great relationship with all of the NICU staff and sweet because we were finally taking him home after 104 days! I cried the whole ride home. I think it was a combination of disbelief, happiness and sleep deprivation. We never thought this day would come and all of a sudden it was happening.
We were given SO much information as we were discharged. Eli has a lot of doctors to follow up with in the coming weeks (cardiologist, pulmonologist, pediatrician, occupational therapist, etc.) and there are medications and supplements he will be on for the next little while. Eli also came home on oxygen so that has been a challenge. It feels like we can't move him around very much because he is always tethered to his oxygen tank. Eli also has a monitor that is constantly reading his blood oxygen saturation and heart rate. In a way it's kind of nice to know something will beep at me in case anything is wrong, but it also beeps when nothing is wrong like if he kicks his feet or if I pick him up. It's like the boy who cried wolf: it will start beeping in the middle of the night and either Jason and I will get up to go check on Eli and as soon as we are out of bed, it stops beeping. But beeps or not, we are happy to have our little boy home safe and sound with us!
As much as we would like to have visitors, we won't be able to for a while. The doctors have told us that Eli needs to stay as healthy as possible so that as he grows, healthy lung tissue will grow to compensate for the scarred lung tissue he currently has. The past three months have been extremely hard on his lungs because he was ventilated and needed constant oxygen support. So, we have to be extremely careful with what he comes in contact with. A lot of preemies with respiratory issues can end up back in the hospital and on a ventilator with just the common cold. It will take several years for Eli to be strong enough to handle getting sick. Unfortunately, that means no church, public places or visitors for at least his first year of life and every winter until he is 3 or 4. It's definitely going to be a challenge and it's hard to stay inside and not show off our little one because he's so cute! :)
So many people have sent us quilts, clothes and letters during these past 4 months and we appreciate it so much! The blog posts may not be as frequent now that he's home and there's not as much to report, but that's a good thing! I think we are ready for a little bit of boring :)
