Yesterday we said goodbye to our sweet baby Afton Jean. It was the toughest and sweetest day of our lives. Our sweet Afton Jean passed away late in the afternoon, after spending the entire day surrounded by her family and grandparents.
Our first day in the NICU (Tuesday) was amazingly calm. It was one of those ‘no-news-is-good-news’ types of day. We knew the road ahead would be filled with challenges, so an uneventful day is huge. Unfortunately, we were not so lucky on Wednesday (our second day). Afton had her first head ultrasound and the Neonatologists discovered significant brain injury due to lack of blood to her brain. The injury covered large portions of her occipital and parietal lobes, along with additional damage to her temporal lobe. It is unknown if the injury happened at birth (possibly related to my placental abruption) or prior to delivery, but the damage was extensive. After hearing this heartbreaking news, they asked us both to invite our parents down for a formal meeting in one of their offices so they could help us understand the impact of this injury. We were in shock and so saddened to hear this.
We sat with our parents and listened (heads spinning) to the doctors as they explained the extent of Afton’s injury and how it would impact the quality of life for our baby girl. It was devastating. Our hopes and dreams for her were crushed. (tears) The neonatologists explained that based on Afton’s early gestational age and small-small size, her statistical chances of survival were already small (less than 10%) without a major incident. The injury to her brain was more than a major incident.
The doctors were also concerned about Afton’s PDA – a hole in her heart that is natural prior to birth and normally closes when a full-term baby takes their first breath. It is not unusual for the PDA to initially remain open on a preemie, but hopefully it closes on it’s own. If the PDA doesn’t close on it’s own or through medication, surgery is required. The size of Afton’s PDA was a concern, and the doctor’s were not hopeful that it would close on it’s own. Surgery was also not a viable option due to Afton’s small size.
We were not ready to hear this. We were not ready to accept these scenarios. We cried a lot that day (and since). We prayed a lot that day (and since).
Over the following days, we continued to monitor Afton’s progress through multiple scans (heart and head) and received feedback from multiple NICU docs inside and outside of our hospital. We were told that ultimately, it would be Afton herself who would provide the most valuable feedback based on how her progress was trending. When the doctors sat us down on Saturday for our third consultation in four days and explained that the injury to Afton’s brain was worsening, we knew our time with her was short.
We spent as much time with her over the weekend as we could, and she even had the privilege of her own personal ‘Aiden experience’ (note to self: NICU’s and 3-yr old boys do not mix).
Recognizing that it would be our final day with our sweet baby girl, we arranged to have Collin Kartchner come and shoot some photos and video of our little family and Afton’s grandparents. We wanted to capture our memories with her forever.
On this bittersweet day, Kyle was able to give sweet Afton a name and a blessing, and after another 10 minutes of hugs, kisses and tears, our parents took our kids and we were left alone with Afton and her nurses. We weren’t sure what to expect from the process, but what we received was truly a blessing. Kyle and I were able to spend the next 6 hours holding our baby girl, free from most of the tubes and wires that dominated her week on this earth. 6 hours of bonding to catch up for a week of being separated by her isolette. 6 hours of hugs, kisses, tears, smiles and the sweetest spirit you have ever felt. We told her we loved her and that we were so grateful for how she blessed our lives. Then we told her again. And again. It was the first and last time I got to hold my sweet baby girl.
When Afton knew we were finally ready to say goodbye (and not a minute before), she returned to her Heavenly Father. (1000 tears)
As tough as today was, it was remarkably sweet, and such a huge blessing. As my sister Becky pointed out, how often does a child get the undivided attention of both parents for 6 straight hours hearing nothing but how much they are loved and adored? How often does a family get the chance to do all the things we did today before they lose a child? We know that Afton is a part of our family forever and we cannot begin to explain how blessed we feel to have experienced this past week with her.
This whole experience has been filled with minor (and major) miracles that have sustained us and confirmed that people are good and God is great. Not wanting to skim through the recognition of those who have provided so much support the past three weeks – and wanting the focus of this post to be on our sweet Afton Jean – I will post a follow-up post soon sharing the amazing support and sacrifice we have benefited from. So many people stepped up to make sure things fell in place during our most difficult time. We are so grateful for you all.
After a whirlwind week of heartbreak and sweet blessings, we are so full of gratitude for the sweet seven days that our baby girl graced our lives. Our lives are forever changed for good. I can’t wait to tell you all about our sweet baby girl and her amazing spirit that was WAY bigger than her little body could hold. There’s so much more to share, but the events of the last few days, have left us exhausted.
Thank you all for your sweet prayers and encouragement through this most trying time. We have been OVERWHELMED by your love and support.