UPDATE ON BABY STEPHANIE!!! Original blog post here: http://www.stellabrunermethven.com/2014/01/please-help-baby-stephanie-by-auntie-angie/
From Cherry (Stephanie’s Mom)…
Thank you so very much to all the donors for helping our family during such a tough time. It is extremely challenging having a child with congenital heart disease that they are unable to do a surgery or transplant to fix, and it makes it a little easier knowing people truly care and are willing to help. We are deeply thankful for all of your kindness and generous support that has been given to us, it is truly appreciated and will not be forgotten <3
Lots of love from De Souza Family
Because of the unbelievable generosity and love from all of you…blog readers, friends, strangers, and Stella’s community of supporters….baby Stephanie will have her mama home with her for an extra 3 months so far!
Since the blog post about baby Stephanie went up, Cherry and Andre (Stephanie’s parents) have been in awe over the outpouring of love and generosity they have received. Not only through monetary donations, that will help them stay afloat for the next several months, but messages and prayers of support, hope and inspiration, lifting their spirits and helping with each day. I also want to personally thank all of you, as one of Stella’s auntie’s who has been sad and grieving and a little lost, I have found strength and resolve in helping baby Stephanie and her family connect with this incredible community of supporters.
Many of you have been asking how baby Stephanie is doing, and have requested updates, which has been wonderful for Cherry and Andre to know that so many people care about how their daughter is doing. I hope to keep everyone updated on how she and family are doing through blog posts every few months.
And now for the update…
Baby Stephanie recently recovered from a cold that required antibiotics because it just wouldn’t clear. For a baby who requires oxygen 24/7, adding a constant cough to the mix, created a situation where breathing and recuperating was quite a struggle. However, Stephanie is a tough little one and has now bounced back and is stable.
Last week she visited a paediatric ophthalmologist because Cherry and Andre noticed a glare in one of her eyes when the lights are off. During the visit they were told that Stephanie has no sight in her left eye, however the vision in her right eye is quite good. While not always in unison, her eyes will follow a toy dangling in front of her and it’s clear that she finds enjoyment in watching the tv, bright lights, balloons, and will even turn her head around to see who is holding her.
I can’t help but think back to Stella, who’s vision gradually deteriorated to a point where we weren’t sure if she was able to see anything at all. Despite limited sight, Stella adapted and came to rely heavily on her hearing, which was with her right to her final time with us. Hearing is often the last or the only sense a person has when losing their abilities or in their final moments, so the use of sound is incredibly important in bringing comfort and communicating love. We audio taped Gracie telling stories for Stellie so she could listen to them and hear Gracie’s voice when Gracie wasn’t with her. We played Dora the Explorer on the tv ALL DAY long, not because Stella could watch it, as we don’t think she could even see the screen, but the sounds of Dora and the theme song with us singing along throughout the day brought her much comfort. Stephanie similarly responds to sound, also enjoying Dora, music, singing, and a little doll that randomly plays an old Carpenters song.
Stephanie is approaching 11 months old and nearing her first birthday. The milestones of a typical one year old are plenty; sitting up, crawling, taking a few steps and speaking a few words. While Stephanie has not reached these 1 year milestones, that are typically ticked off proudly by parents in the paediatrician’s office, she has many milestones of her own that she has achieved. Recently Stephanie has figured out that bringing her hand up to her mouth means she can suck on her thumb and fingers, which brings her so much enjoyment that a smirk often appears from behind her hand. She is also holding her head up nice and steady and with a little support on her back she enjoys sitting up and checking out the scene around her. She also has a new giggle that she saves for moments that she finds particularly amusing, and it’s unbelievably cute.
When it came to milestones, Stella was always ahead of the game. She rolled over early, crawled early, and spoke several words before any of her friends the same age did. This made it particularly heartbreaking when she gradually lost every single ability she had so quickly and seamlessly gained. We often wondered if it would be easier, for both us and her, if she had never acquired the skills in the first place. Now I see that both situations are difficult in their own ways and that it’s much harder on the parents rather than the child it’s happening to. When it came to Stella, she adapted to her eroding abilities just as seamlessly as they were gained. But for us, it was excruciating to watch. For Stephanie, she is just as content to suck on her thumb and giggle freely. But for Cherry and Andre it can be a struggle.
One aspect that is particularly hard for Cherry is Stephanie’s inability and/or refusal to take food orally. Despite being on an NG tube, Cherry has been trying to feed her baby food, to help with weight gain and for Stephanie to experience the pleasure of taste. But Stephanie will have none of it. Mishi has written in the past about the parental instinct to feed your child, and how intrinsically hard it is when you’re unable to. Cherry feels the same sadness.
But the most impactful update is the fact that Cherry can be home and present for all of the little milestones Stephanie is experiencing. She was set to return to work in March but is now able to be home together with Stephanie and Andre on the weekends and at Emily’s House with Stephanie during the week. She is with her for just about every minute of the day, even when I come to relieve her and Andre for several hours each Sunday, she always stays close by, never leaving the apartment. Aimee and Mishi held the same attachment to Stella, rarely veering far from her. It is because of this amazing community of family, friends, and Stella supporters, that helped make it a reality for my family, and I am forever thankful to all of you for making it happen for Stephanie and her family!
On May 6th Stephanie will turn 1 year old. A feat that no doctor imagined possible. A one year milestone of living, happily, and giggling. If you have a moment on May 6th, let’s appreciate the little milestone that is baby Stephanie <3
To contact Cherry and Andre, send messages of love and support, or send an email transfer, you can connect with them at:
To learn more about Emily’s House and baby Stephanie in the news check out the links below: