So what does Miss Finley need to accomplish so that we can go home? There are 3 things on our “checklist.” She needs to;
1. Be consistently gaining weight.. So far Finley had been a little in consistent with some gains, so losses – and they want to see 15-30 gram increases each day.. You can imagine given the first few weeks so much of her calorie intake had been going to healing and her breathing – so it is understandable that she wasn’t gaining a ton of weight – add to that the fact that she was behind on her growth from being on TPN for 4 weeks (IV nutrition)… She has been gaining for the last few nights so she just needs to keep that up.
2. Be taking all her feeds orally (bottle or breast) for a couple of days… She is getting VERY close on this.. She took 95ml yesterday morning, 75ml this morning and now is averaging 60s-80s for her bottle and breastfeeds.
3. Be done with Sildenafil – she will be completely weaned by Monday and they will want 3-5 days post to make sure that nothing changes in her oxygenation which would signal an increase in her pulmonary pressures (PH). If there were any changes that just means we would keep her on the drug for some period of time post-discharge. So not the end of the world – but it would be nice not to be on any meds (besides her reflux medicine, Prilosec).
I am so amazed at how far she has come. I had my 6 week follow up appointment today with my wonderful Perinatalogist, Dr Thomas Lee and as I was saying goodbye to my amazing and sweet nurse Theresa, I was struck by the memory of the first time we came to NW Perinatal. Memories of walking across the parking lot with our ultrasound tech to get the diagnosis of CDH confirmed. Being told that Finley only had a 40% chance of surviving. Sitting in my car and calling Rachel and crying. Rachel calling me back a little later and telling me she thought that her husband knew a Surgeon that was one of the best for handling this type of condition, a Dr Bliss. Then being brought back to this moment where we I am showing off pictures of Finley and we are so close to bringing her home – our baby that was given a very scary diagnosis but she is doing amazing. I just thank God for being with us through every step of this journey, as he will continue to be. I was reminded in a book I was reading that Emmanuel means ‘God with us.” How appropriate that name is for this hospital.