amelia & i are home!
we are both exhausted but home. we have been through so much already this week & there will be SO much more to come... but our little bluebell is home with her mum & dad & 2 big sisters. i look forward to getting her settled into her new routine.
more on chelsea...
well her heart condition is reasonably complex. the defects are 3-fold & serious. chelsea has DORV [double outlet right ventrical], a large VSD [ventricular septal defect] and critical PS [pulmonary stenosis]. so thats a whole lotta things for one tiny little baby to deal with. the corrections & fixes will be ongoing & staged throughout her life and provided she can jump these surgery hurdles, the long term outlook is a relatively normal lifestyle. she'll never be great at physical activity but thats ok, she can be a mathematician or an artist!!
this week she has been responding well to all her treatments, tolerating bottle feeds, being very settled & looking as cute as a button, all cosy, in her cute little bed in the NICU. the idea is she'll live there until she is considered good size at which point she'll be transferred to RCH in Melbourne for the 1st of her little heart fix procedures. naturally i have been spending as much time as i could with her this week & we'll continue to do so every day until she can come home.
oh how my heart aches for that day.
needless to say i have been extremely emotional this week. a relief that both were born safely, totally besotted with both my absolutely beautiful little babies but also absolutely torn & sick with worry about how chelsea will handle all of the hurdles she has in front of her.
here's my little ones together.... God these pics of them together makes me weep uncontrollably because they can't snuggle together all day like other 'well' twins. they are separated. cuddles are a struggle to manufacture with cords & clips & beeping machines etc etc.... so every photo i have is a blessing & i will treasure until they are reunited together fulltime @ home some weeks, months down the track.
this picture was particularly good as some of chelsea's tubes had been removed.
today was very difficult. a beautiful & exciting day for amelia - her homecoming. a sad day for me leaving the hospital and having to leave chelsea behind. i know i know i will see her every day but nevertheless, i was extremely teary about leaving. then we had some unexpected news. one of these 2 steps forward, 1 step back kind of deals....
chelsea is having complications already. colitis. horrid condition that can affect preterm babies, particularly those who are unwell from other conditions. she is critical. we hope that her new medications will see her through & she won't need immediate surgery this week, on her intestine/bowel that is, not heart..... see - another complication! grrrrrrrr^&$#^&$
these are the complications that terrify me to the bone. she may well do great with her own HUGE hurdles & get through surgeries etc but complications can come and destroy our hopes & dreams without warning.
its hard. its very hard for us all right now. we have so much going on & need lots of space to get done what we need. my inbox is full with emails of love & congrats & i am so grateful & thankful. please accept my thanks & forgive me for not answering right now. i feel lots of love & prayers around us AND for us & we are stronger for it. we'll need every bit of strength to get though this. this is really hard. todays news is making this even harder than i imagined.
anyway, i am strong & i will hold it together for my little blossom, for my girls and for jeff. i will cherish this family photo of the 6 of us until we can get something a little better. hopefully that will be very very soon.
i know i am rambling & i am probably making others feel sad & down but i need to record this journey. its good therapy too! and if people are happy to read about our journey and send positive vibes & prayers out into the world for our little chelsea blossom we'll only be too happy to accept them.
know we are so grateful for the kindness.
ok, off to do more settling in...