Author: Kiera Chechlacz, mom of 27 weeker Arabella
My pregnancy started off normal and healthy. At 16 weeks I went for routine blood work and the doctor noticed that I had elevated AFP levels. She said that since my ultrasounds and other levels were fine, it could mean tthere was an issue with the placenta. Since week 22 we were told our baby wouldn't make it as she stopped growing at roughly 21 weeks. Every ultrasound and doctors visit after the news of her failing placenta got worse and worse. Then at about week 25 or 26 her dopplers were all reversing. We had to see a grievance counselor and were told to pick a name and bond with our baby until she passes. The last weight scan showed her weighing 470 grams but babies aren't considered viable until 500 grams. At 27 weeks, despite the doctors worries, we had to give her a fighting chance since her heart was strong and she seemed like a fighter. Arabella was born on February 17 weighing 480 grams. Through testing on my placenta, it was discovered that I had a very rare disease called MPFD (Massive Perivillous Fibrinoid Deposition) which contributed to her low birth weight.
Our NICU journey was a roller coaster, in every way. During Arabellas time in the NICU she overcame multiple blood transfusions, PICC lines, sepsis, multiple infections, a NEC scare, an overdose on diuretics and was diagnosed with a PDA which required a surgery that had to wait as she was too fragile. We then discovered that she had extreme osteopenia of prematurity and she had multiple fractures all over her body. Her bones were so fragile they thought there was a deeper issue so my husband and I had to do several tests to see if it was a genetic issue. Arabella was on and off the ventilator for almost 5 months because her lungs were so fragile and damaged. Finally, at 5 months old, she was strong enough to come off of CPAP and go on oxygen. We continued our journey on another floor until she was 6 months old and after 177 days, Arabella finally graduated from the NICU!
Arabella came home with an NG feeding tube, oxygen and had so many follow-up appointments. After a couple of months of following up with the Bone Clinic, her bones were strong and healthy enough to be discharged. She also followed up with Pulmonary and was oxygen free 6 months or so after she came home. She also had pulmonary hypertension follow-ups of which she was also recently discharged. She is currently followed by Nephrology for not only kidney calcification of prematurity, but also because she was overdosed on a diuretic called Lasix which can cause kidney issues. And just after her first birthday, she had a Gtube placed. Arabella has defied all of the odds by meeting all of her milestones, was discharged from all of her NICU follow up clinics and we just celebrated her third birthday! Although she is tiny, you would never think that she was micropreemie.
When it comes to life after the NICU, I wish I would’ve known that fear and anxiety don’t leave just because you’ve left the NICU. My anxiety is still very overwhelming to the point that I suffer from PTSD. I am so scared of Arabella encountering any illness, us having to go back to the hospital and all of the “what ifs”. I wish I knew after leaving the NICU that I would never be able to trust anyone else with my girl. If she’s not with my husband, she with me because we just don’t trust her being out of our presence. Fear has taken a serious toll on my mental health. I wish I would have seen a therapist more than the few times I did while she was in the NICU and continued therapy after we were home. I knew our girl went through so much in the hospital, but I wish I knew that the follow up appointments would take over our lives. Once we were home there was never alot of downtime, as our weeks were jam packed with appointments, from follow ups to physio, OT and the list goes on.
A tip I would give to moms or any parent when first coming home from the NICU is to first and foremost take care of your mental health and reach out for help if you need it. See a therapist and don't feel scared or ashamed that you need help. You’ve just come through a traumatic experience and there’s no shame in needing to speak to someone. Don’t just sit on your thoughts and fears. Let them out so that you can work through them. Coming home from the NICU can be overwhelming, especially if you have back to back appointments. Even if you just let your spouse take over for a bit, definitely take time for yourself to just relax. If you ever have any questions or fears always bring them up at appointments. There is never a question too silly to ask. Another thing that helps is to write or journal as it’s a great way to let everything out. My husband started a blog where he details our journey and it's been very helpful for us and those reading it. Whatever you do, parents make sure you find a release. You deserve to have peace after all you’ve been through.
If you would like to follow Arabella’s journey, follow Kiera on Instagram at @kierachech or check out their blog at: https://arabellasodyssey.blogspot.com/?m=1&fbclid=IwAR3BPLTdZySvotzUX6lDyAAigHf5KoiyhFRCH-bGPNDZvA7-QA6HreKR7Mg