It is hard to believe that it has been 4 weeks since we brought Ellie home from the hospital! Life has been an absolute whirlwind since bringing her home.
Progress – Ellie is doing fantastically. She is drinking more and more milk on her own, her current record is 85mls (a whole feed is 165). She is breathing really well and even managed a whole night without oxygen in the first week (we forgot to turn it on!…she was rather tired though). She is probably the best sleeper of all of our kids over night. Her development has been fantastic since coming home. She sits up on her own without any difficulty and has started to become almost as ‘grabby’ as her sister. We have been told her ‘rocking’ is a sign she is keen to move, but she is still a way off crawling. Meanwhile, we are desperately trying to tell Hannah that she doesn’t need to start walking yet, but she has other ideas and is pulling herself up on everything possible.
Family Life – Life is a bit of a circus in our household. Twins, 2 older kids and Ellie’s medical requirements make an almost full time job for two parents, but we are starting to get a handle on the routine….just with very little sleep! Ellie absolutely adores being home. She smiles and giggles all the time and is so happy just to be here. She loves watching her brothers play and interacting with Hannah away from a hospital bed. Nate and Hannah have a sibling romance going on and can’t get enough of each other, and Levi has responded by deciding Ellie is his favourite and has become her best advocate (‘What about Ellie’ is a common phrase to come from his lips). It is absolutely beautiful having our little clan all together, but the moments to actually stop and reflect on this miracle are few and far between at the moment.
Challenges – On our first week home Hannah pulled out Ellie’s NG tube. We had looked away for all of 10 seconds and looked back to find both girls smiling and Hannah playing with the long yellow string that had magically come out of Ellie’s nose. Deb and I had to choose between going back to the hospital, or putting it back in ourselves (we were told not to do it until we had done 3 under supervision). We both felt fairly confident after seeing it done dozens of times in the hospital, and we decided to give it a go (we had also done it once each on our last day in hospital). Ellie was very brave and we managed to get it down without too much fuss, the biggest problem was trying to fend off Hannah at the same time who was balling her eyes out and trying her best to wrestle us and help her sister.
Where too from here? – Ellie is currently fighting off the family cold, but so far is doing well with it (we were told to expect a trip back to hospital, even for a simple cold). When that is sorted out they will look at slowly weaning her off the oxygen. We also need to get her oral feeds increased so she can one day lose her NG tube. There are no fixed dates on this, but so far the progress is pleasing. We also need to work hard to keep her physical and mental development moving along. Most weeks we have one or two appointments for her hearing, early intervention, physio, occupational therapy, paediatrician, feeding clinic, respiratory and sleep team.
While we don’t miss being at hospital and regularly blogging, we do dearly miss all our friends and supporters who helped us so much through the first year. You will never be forgotten and will always appreciate you and hopefully when life settles down we can do something with you other than ask for help!
I’m in charge of adding the baby spam.