dear friends of ours.
i know word travels fast, but i also know that many of you are far away - so for those of you who have heard - here is an update. for those of you who have not : we have welcomed our baby girl into this world!
her name is elida rose, she was born on wednesday may 4th at 9.38 am weighing 5 lbs 3 oz. our darling little girl has a rough start and there have been some complications that i wanted to make sure you knew about - that you might hold our little family close in the coming weeks as we learn more about the growth and development of her little body.
when elida was born she there were many concerns about some physical abnormalities that were immediately apparent. her legs - while in a typical breech position (she was born via emergency c-section as her positioning was either mis-diagnosed or she moved in the days prior to birth from head down to breech) showed signs that they had not been moving throughout my pregnancy, one foot was positioned up on her chest - indenting and bruising her chest from growth happening in that position. her arms where also not showing signs of muscle movement, her fingers where balled up over one another. they have reason to believe that she did not move any of her limbs for most of her development in utero.
elida was seen immediately by a neurologist and a geneticist who have identified that she has "contractures" of her joints - a diagnosis that can be worked on with occupational and physical therapy. the biggest question however is what has caused these contractures. my understanding of this question is that they need to determine where the breakdown is happening between her brain, nerves and muscles.
the first step was to do an MRI of her brain to see if there was proper brain development. this was the scariest of options... we got the results back on saturday afternoon that everything looks normal and her brain is working as it should be. the next step is to do genetics testing that will identify if there are any chromosomal abnormalities that would be affecting her nervous system. the results should be back at the end of next week. after that, they will do more specific testing of her nervous system and then of her muscles.
in the meantime we are staying VERY hopeful about her day to day progress. her legs are both down in normal position without any dislocation. her joints are becoming more limber every day - and especially with the help of our wonderful physical therapist. the occupational therapist is working with us to learn about her ability to swallow - they are doing a test tomorrow to determine why she has been unsuccessful at nipple feeding up until this point. they will also be making splints for her wrists and fingers to begin the groundwork on addressing her fine motor development. being that she is only 5 days old, i feel that we are all already diving deep into learning the tools it will take for her healing as well as our understanding of how to best address some of her current struggles.
unlike the doctors, i am not looking for any kind of understanding of why elida is the way that she is. she is spectacularly beautiful. she reminds us constantly of her strength- you can see determination in her eyes already. to be honest, i pray that all the tests will come back clear, that there will be no text book reason for why she is born as she was - in that - there will never be anyone telling her what she is or is not capable of doing. i will continue to imagine the best for her... she has given us no reason to believe anything else.
i am excited to take our precious daughter home... but i know that she is not strong enough yet. we have a lot to learn... and she is in wonderful hands in the meantime.
my dear friends, please keep elida in your prayers. please keep hope for her and believe in her continued healing. i am excited for you all to meet her!
love to you all,
amelea and seth
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