Post NICU - Follow up after discharge

NICU was only the beginning of this whole journey. Once we got discharged we already had a plenty of appointments set up for the year ahead. We were told that development in the next two years is super critical and should be closely tracked. (We tried to combine different scans in one day where possible so we did not have to go back and forth)

We also had a few conditions that required close follow up until they resolved, which was very worrying. Bright side, D. was coming home and we were going to be together 24/7. Well...Always better together...

First few months, I could not help myself but worry over these conditions we had to track. Before each appointment, I would be stressed so much which sometimes kept me from enjoying the moment. If there is one piece of advice I could give to myself at the time would be "don't worry, be happy:)" Easier said than done. Post appointments were better though. Yet still, I was just looking forward to leave them behind.

Items below are the ones we required to get checked. This list is not same across for all the premature babies yet can be very similar.

• Brain scan: Our bleeding type was grade 1, which was the mildest. However, it had to resolve for a healthy brain development. We had three brain scans after we got discharged. It resolved in 3 months post discharge. Doctors were optimistic. However, it is very difficult to stay hopeful as parents when you see no change. When it finally resolved, we were super happy and grateful.

p.s. Brain scan is done through an ultrasound which is a noninvasive technique and there is no ionizing radiation exposure associated with ultrasound imaging.

• Heart scan: D. had both PFO (an opening between chambers) and PDA (opening between blood vessels). In case these holes are not closed, this condition might require surgery. Brain bleeding along with holes in the heart were the most scary conditions for me. Both presented a great deal of uncertainty and only action we could take on our side was to leave it to time.

During our stay in NICU, there was a period where I became obsessed with the holes and I bored the pants of our NICU doctor by asking a dozen questions every single day. Questions would be almost the same everyday: "What happens if the holes do not close?", "Is it normal that she had x mm of a hole in her heart?", "What's the success rate of the surgery?", "Google suggested this and that, what do you think?"

One day, I lost it. Doctors were doing rounds. Around 8-9 doctors came by D.'s incubator at the same time. (Rarely they did the rounds with their students.) I am not sure if it was about the number of doctors visiting or if I was simply off that day, I started crying in front of them. Our doctor had to have a heart to heart with me to make sure I am not going crazy:)

We continued to go back to hospital for 3 more times to get the scan done until it resolved completely. Each time we did an ultrasound, holes were getting slowly smaller which was what we wanted hear.

During the process, I had a hard time seeing the bright side. Even if there was good news, I was not able to cherish it fully. I really needed those holes to completely heal so I can focus on other things.

3 months post discharge, they were completely resolved:)

p.s. Heart scan is also done through an ultrasound which is a noninvasive technique and there is no ionizing radiation exposure associated with ultrasound imaging.

• Eye check: Done on the 32nd week to see if there is any retina of prematurity of the eyes. If they observe anything out of the ordinary, they repeat it after two weeks. ROP (Retina of Prematurity) is common among extremely premature babies. Early diagnosis is critical as there are different treatment methods for ROP. After discharge, you will be asked to come in after 6 months and 18 months as vision development continues until 2 years of age and early diagnosis is lifesaver!

• Hearing test: Noninvasive test done towards the discharge day. We passed on the first one. However, there is no failing in this test. They refer your baby to an audiologist for further testing if required.

• Blood test indicators: They run some final tests before you leave and give you supplements if needed or ask you to come in to check again in a few weeks time. D.’s hemoglobin level was low. We received one last blood transfusion the day before we got discharged to avoid any deficiency and were recommended to continue iron supplement. Her vitamin D level was also close to lower range, so we got prescribed vitamin D as well. We were also invited back in two weeks time to redo bone profile as we had a few indicators that required follow up.

• Physiotherapy sessions: Requires a whole other entry. Click for the physio follow up session details.