Highs & Lows

I wrote this two weeks ago in a bit of a low moment, since which the little munchkin has perked up and is now ready for a procedure tomorrow to have a P.E.G put in, so that we can feed her easily and safely at home. It will mean she will have one less tube in her face, but a tube coming out of her tummy instead. The tube goes straight into her tummy, and we will pump her feeds in through the tube, while we continue to work on her bottle feeds and practice sucking. She’s always very excited to try her bottle, but just hasn’t learnt yet how to feed and suck effectively. It was a tough decision, but the best one in the end for all three of us, to ensure feeding can continue to occur without stress and be an enjoyable experience. She will have a light anesthetic and the procedure will be performed by the gastroenterologist.

Anyway…I decided to post my thoughts from two weeks ago anyhow, as it’s a good reminder that all yucky things do pass, they are never horrible forever. As hard as it is to trust her sometimes, Lily’s got it all covered. She is after all continuing to grow, 5.1kg and nearly 8 weeks corrected….

…The last couple of weeks have been horrible, no sugar coating required…they have completely sucked! 23 weeks, nearly 160 days in a hospital and battling horrendous traffic everyday will eventually take its toll on a person. Totally over it. Lily has caught a cold in the hospital, which for you and I is bad enough, but for Lily is even harder to kick with her fragile lungs. She’s snotty and grizzly, having trouble with her feeds, vomiting and desatting. She created her own code blue alert last Thursday while waiting for a nuclear thyroid scan downstairs, when her portable oxygen ran out, she vomited and stopped breathing. It sounds very dramatic, but it’s not even a stretch of the truth. I have never really felt like I was going to lose a loved one before, besides the time my Mum was sick in 2009, but Lily has thrown me over the edge so many times…that unnerving feeling where your legs crumple beneath you, unable to hold you up, you slide down against the wall in a snivelling mess, until the nurse comes to tell you everything is ok. You get back up and walk back in, and sit next to the baby that you thought you were just about to lose…again.  There are so many things I have seen in the hospital that I can’t unsee: I have seen my own child be saved by amazing doctors and nurses on numerous occasions…as her face and lips turn blue, her body becomes limp and she struggles for air…..I have seen babies crying as they are weaned off morphine because they have been born addicted to drugs, I have been surrounded angel babies that never get to go home with their Mum and Dad, I have seen despair and distraught cross the faces of new parents as they become familiar with the NICU, I have seen fantastic nurses and not so good nurses, but most of all despite all I have seen and can’t unsee I have got to know one precious little human, very, very well. As I sit with her each day and observe her keenly, waiting for signs of progress, a chance of going home, she makes all the horrible things ok. That smile, that giggle, those bright eyes, keep me going back each day.

…Tomorrow is a big day for everybody, one that will bring us the closest to home so far.  I’m a bit nervous but hopeful that it all goes to plan. As always Lily will decide what will be, and we will be there for her. Christmas still isn't out of the question, she's got us on the edge of our seats!