Appointments, appointments, and more appoinments

When we brought home our micro-preemie from the NICU, we had 2 pages printed out for us of follow-up appointments. It’s been almost 4 months since we brought him home, and there’s still one specialist we haven’t seen. We have to travel 2.5 hours for some appointments, but most are 20-45 minutes away. some weeks, we have up to 4 days of scheduled appointments

Who do we have to follow-up with?! You name it, we have to see them. Well, it’s not actually THAT bad, but there’s a lot. Besides routine pediatrician visits, we see ENT(failed hearing screening), endocrinology(mild metabolic bone disease), nephrology(high blood pressure), cardiologist, pulmonologist, opthamologist, and NICU clinic. We’ve finally made it to where they are scheduling at 3-6 months out instead of seeing us so often! It’s all so intimidating and can take hours by the time they do X-rays, EKGs, ultrasounds, echocardiograms, and lab work. We are just so thankful that everything has shown improvement this far. Our only major issue is his hearing. I’m praying and trusting for another miracle, because I know God is the true physician and healer.

We came home on 1/8 of a liter of oxygen, pulse oximetry monitor, and an apnea monitor. The main reason for still being on oxygen, is because it’s RSV/flu season. Yesterday, we went for a pulmonology check-up and he decided to go ahead an order the overnight pulse of study. Yay! So, when we get that monitor, it will record his oxygen saturation at all times throughout the night and let them no if he’s ready to come off of oxygen.  We are excited to be to this point, but nervous to be without everything. I’m so used to tubing, wires, oxygen bottles, and alarms-I’m not going to know how to act.

We are super proud of our little guy.

These preemies are such fighters and miracles. They are reminders that we often take too much for granted. These preemies give you hope, they show us just how fragile life is. They show us the power and mightiness of God. They show us what a true miracle looks like. They show us just how strong we are, when we don’t think we have the strength to go on… you have to go on and fight for and with these babies. They help you discover your voice. You are their only advocate. They are depending on us as parents to be their voice. Don’t be afraid to speak up, ask questions, or even call out mistakes or things you don’t like about their care.

Being in the NICU with a micro-preemie is a long, difficult, trying time. It’s described as a rollercoaster ride, full of ups and downs, highs and lows. Good news one day, not exactly what you want to hear the next. Like I’ve always said, it’s ok to cry, it’s ok to be upset, and it’s definitely ok to smile on the good days. Hang in there, being a NICU parent isn’t easy, but you, too, can do it!

When my heart is overwhelmed, lead me to the ROCK that is higher than I. Psalm 61:2

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