“She is life, a living, breathing, loving, precious gift from God who smiles, coos, cries and for the first time today giggled when her daddy kissed her neck.”
Sofie Marie Haynes, Trisomy 13, 1/24/2014, Santa Rosa, CA
Posted 7/20/2014: It has been a very busy few months for Sofie. We found out in June 2014 that Sofie has glaucoma in both eyes, cataracts in both eyes and coloboma both eyes as well as under-developed clogged tear ducts in both eyes. She had a bilateral tear duct probe and flush that worked pretty well initially but now seems like may be failing in her left eye. She also had cataract removal from right eye on 7/8/2014. Both eye procedures were done at CPMC in San Francisco, Ca. She will be having cataract removal surgery on her left eye in the next couple weeks and then we will get her fit for glasses.
We had to give some time between eye surgeries so that Sofie could have her long awaited cleft lip repair surgery. We just got home yesterday from the hospital. Her surgery was done at UCSF Benioff Children’s Hospital in SF Ca on 7/18/2014. As always Sofie did amazing! They were really great with her and extra cautious, recovery was in the PICU , just to be sure she had full nursing care in case she had any trouble but, in true Sofie style, she did great. Most stable child in the PICU and did so good they let us come home a day early.
Sofie continues to grow and strive. She still takes her feeds from her Haberman bottle, breast milk, and has been put to breast a few times but not much latch there. We will continue to work on latching to breast once she is healed from lip surgery. Hope is that we will eventually be able to take breast in place of Haberman.
Sofie has also started taking rice and oatmeal baby cereal a couple times a day over the last few weeks. We started introducing cereal more for the experience and getting her familiar with different textures by mouth. She has done very well and we were able to add oatmeal by week two. She now eats a rice oatmeal combo, because she likes oatmeal better, in the am mixed with breast milk and then oatmeal and breast milk in the evening each day. She now weighs 9 lbs 11 ozs and us 23 inches long. That’s an increase of 2 lbs 10 ozs and 4 inches since birth!
We began physical therapy in June as well so she has very quickly began to use her new found movements in her everyday play. Pulling legs up under her belly during tummy time to prep for crawling. Rolling front to back and back to front. Pushing up in arms and hands and working on head control. She is growing, learning and changing every day and we are so thankful that God has blessed us with our amazing Trisomy 13 Princess Warrior!
Posted 6/25/2014: Today our precious gift turned 5 months old! I can hardly believe it’s been 5 months since I first heard the most beautiful sounds of her crying. Not only did our princess prove the medical professionals wrong by living inside my womb until birth, she also proved them wrong by entering this world, breathing and crying.
They said she would likely die within hours of her birth and would need serious interventions to even consider keeping her alive, which they strongly discouraged. But we knew all along that God had sent this warrior princess to all of us to live a life of testimony to him. She not only breathed on her own but never required any real interventions.
They checked her head to toe, convinced there would be many things wrong with her anatomy. Her heart, her kidneys, her diaphragm, her brain, but again our precious Sofie proved them all wrong. Even then, with no serious medical conditions and the only anomalies associated with her syndrome being her clefts and scalp, we were told if she were to need life saving intervention they wouldn’t give it because she was Trisomy 13.
Encouraged by the neonatologist to sign an advanced medical treatment form for her refusing any life saving measures if needed. Again we dismissed the “professional opinion” and put all our trust and faith in God vowing to always fight for this precious gift He gave us and believe in him to continue to work miracles in our baby girl. Five days after her birth and having been transported from Sutter Medical in Santa Rosa to UCSF in San Francisco, we were sent home with our beautiful girl, a bag full of NG tube supplies and a referral to hospice.
The neonatologist told us again that our baby girl would surely die. Even though she was physically very healthy he insisted that because she was Full Trisomy 13 she would not live through her first year and would just stop breathing and die. We gave him a smile, thanked him for his care, shared information with him from SOFT and The Trisomy Project and happily brought our girl home and disregarded pretty much everything he had to say.
The next day we promptly contacted hospice and graciously declined the referral. It’s been five months since our Sofie came into this world, defeating the many odds that were stacked against her and proving to everyone who knows her and hears her story that our God is loving and gracious and He does work miracles!!! Our baby girl continues to grow and thrive, overcome obstacles and prove the “medical professional” wrong. Not compatible with life….she is life, a living, breathing, loving, precious gift from God who smiles, coos, cries and for the first time today giggled when her daddy kissed her neck.
A fatal syndrome…..we are all fatal! Not one of us will live forever. We will all die someday. Some of us young, some of us old, some from disease, some from tragedy but it will happen to us all, not just to a Trisomy child. So then what exactly makes the life of our precious Sofie Marie and her many other Trisomy friends any less valuable than yours or mine? I will live my life testifying of Gods amazing love and awesomeness, fighting and advocating for my beautiful Trisomy princess and all of her Trisomy friends who are discriminated against daily by a still very backwards medical society.
Awareness and true knowledge of Trisomy will bring change in the medical treatment of Trisomy babies and children and I will live all the days if my life advocating for that change. Happy 5 month birthday to our princess warrior Sofie Marie!