What I'm feeling right now is like we were being premature minimizing our baby registries and fearing a tragic ending. We were told by the cardiologist that people and professionals offering us condolences and preparing us for the worst that will happen isn't out of question, it still can. No we probably won't need everything under the sun however there is a possibility that we may be lucky enough to bring this sweet baby home with us, even if for a week or a month. So our needs will just change and we can say what will help when the time comes.
we know so far, our daughter is a little smaller gestational size than typical babies (our son was too however he didn't have any concerning conditions), she has a hole in her heart, VSD (ventricular septal defect) and Full Trisomy 18.
Here is a link with information about VSD : https://www.mayoclinic.org/diseases-conditions/ventricular-septal-defect/symptoms-causes/syc-20353495
This is a link with information about Full Trisomy 18 : https://www.trisomy18.org/what-is-trisomy-18/how-is-the-baby-affected/?gclid=CjwKCAjw5p_8BRBUEiwAPpJO64RmZAqmlIn89wD_y82ZnGlO-xlthTEmaoOcufm6udsUAsT5i8ibOBoCplQQAvD_BwE
We have a lot against us in the future with unknowns. While our daughter's heart may not be as large of a concern as originally suspected, if not right away, it could eventually cause concerns a few months down the road. That is if we are so lucky to get to the 'few months down the road' in her journey living on Earth.
Due to Full Trisomy 18 we have to face the reality that her first moments into this world may include medication, a tube down her nose, and limited surgery to help with her symptoms of T18. Feeding may be difficult, there is a great chance I will never be able to breastfeed our daughter, however I hope to pump and get her milk because I know how important and beneficial human milk is.
We were told that babies with Trisomy 18 oftentimes don't handle anesthesia very well and can be deadly for them. So if possible we want to try and avoid surgery and avoid any further pain and struggle she may occur from surgical recovery.
It may be more about making our daughter comfortable than surgical options. Different hospitals and medical centers handle sensitive situations their own way, most honor family decisions and keeping everyone together if that is what is wanted. Some hospitals don't want to help T18 babies due to their opinion of longevity of life, while others are aggressive, trying to prolong life. What is the cost though? The quantity of life vs the quality of life. We know we don't want her to suffer and we don't want her to have unnecessary pain, and we won't know what to expect until she is born.
Right now it looks like the hole in her heart isn't worsening and that it should not turn into HLHS (Hypoplastic Left Heart Syndrome). Here is a link with some information about HLHS : https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599
Left side of her heart has small concerns, the heart has signs it will be big enough and be ok, may be 10% smaller however shouldn't turn HLHS. Her heart looked good yesterday and adequately sized. The VSD looks pretty sizable and some of valves could be involved with the biggest issue from the hole. The size of the hole will determine if surgery is needed when she is born. Large hole usually does not heal itself. We need to see what happens once she is born, right now is just guessing and unknowns.
Nothing yesterday suggests that surgery should be needed after birth. If our little girl makes it and thrives to the age of 3-6 months, surgery for the heart could be revisited if not a lot of other issues are happening.
This Friday will be the beginning of deciding on my birth plan and trying to get our son to meet his baby sister. We have many things to plan ahead of us.
This is not the end right away necessarily, this will be difficult, this will be emotional, and this may tug at our heart strings as we juggle an unexpected future, however this is not the end.
It is true that one day we will say goodbye and it will be the worst pain we've felt in a long time since we lost our twins. I cry every time I think about that day, however we need to cherish what time we have while we have it.
Our son deserves to celebrate this time with his sister. We asked him and he wants to meet her after she is born, so we want to honor what he wants. We want him to meet his sister and spend time with her. He has dreamed of being a big brother and asked for a baby brother or baby sister for years. It breaks my heart that our son will get such little time with his baby sister.
This girl of ours is so special and so loved, we want to celebrate her with our family and our friends.
Our baby girl's life is important, she is our miracle. <3
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