Day 18…

When June was close to being discharged we learned more about the NICU Graduate Clinic that would be following her growth and development during the first three years of her life.  Knowing that premature infants have a higher risk of developmental delays, the graduate clinic would track her developmental markers, but also give us insight into how her eating and growth was going, and how her saturations were off the oxygen and when we need to discontinue the monitor.

Screenshot 2018-05-18 at 8.51.49 PM.png

One thing as parents of a preemie we had to quickly learn was June’s actual age vs. her adjusted age.  Since development begins at conception, not birth, June’s adjusted age is based on her due date and her actual age on the day she was born. Ideally preemies will catch up developmentally by three years.  The NICU would do several developmental tests each year to track how she was progressing.  In the first year, she would be seen at 3 months, 6 months, 9 months and then at 1 year adjusted age, which was in April, for her first developmental test.

Her first visit was right after my first Mother’s Day and the first person who walked in was someone I knew you from church and had seen the video of our story and even said to herself, “I bet I’ll be seeing her soon.” She was June’s Physical Therapist and gave us some suggestions on how to help with some low muscle tone issues June was experiencing.

Screenshot 2018-05-18 at 8.34.28 PM

We saw a dietician who helped us review the formula and breastmilk regimine June was on and made sure that she was still on her own growth curve.  Being worried about her weight constantly and wishing she could just be on breast milk was such a source of concern and anxiety, especially with the rough bouts of silent reflux.  Even though it was May, we were still doing everything we possibly could to keep her healthy.

We then met with our APP, Kate, who we also discovered later went to our church. We are so grateful for strong relationships with some of these folks who have supported us and continued to celebrate June’s growth.  We went back a few times that first year for follow ups on oxygen and the monitor as well as closely watching her need for continued PT services and always paying attention to her nutrition and growth.

8216A4FF-DE19-45D4-AC9E-6148FD6D139A

We had another visit in the fall and then she had her first developmental test at which she did sooo well!  Of course we were super nervous but she was awesome and met all the markers to be on track for a 1 year old born in April of 2016.

But of course, the following year, she would be tested in February and while we had an amazing year with lots of growth, development and intervention (more on that tomorrow) we still had some reservations. Of course, she exceeded them and is doing really well and still within the “average” range for a 2 year old born in February, her actual age!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s