Our baby has been diagnosed with HLHS (hypoplastic left heart syndrome). We believe that God is in control and will use our situation to glorify his name. As we take this journey, we invite you to join us on our knees and pray for a mended heart.
Monday, 16 April 2012
Running on Empty
Well, it's Monday and it's a new week. And, in our world, that translates into a new rotation of staff, with different neonatologists, different cardiologists, different nurse practitioners, different nurses, different respiratory therapists, different social workers and, last but not least, a different surgeon!! And....along with those different neonatologists, cardiologists, N.P.'s, nurses, R.T's and surgeon are a totally new set of protocols, methods for procedures, preferences for treatment and criterion for pending surgery. Today, was a learning curve for what this new set of staff means when it comes to a date for Hope's upcoming surgery. The day began with Hope's I.V. lines collapsing again and requiring immediate intervention. Since the only way she is able to receive nourishment, fluids, sedation and her critical medication that is keeping her alive at this point, is intervenously, it is imperative that they have at least 2 lines in at all times and working well. Finding a good vein is a challenge and poor Hope has had her hands, arms, feet and head poked on numerous occasions, all in search of a good vein. Today, 6 different people tried a total of 14 times before someone was successful at getting an IV in Hope's foot. As a mom, this is pure torture to watch and I often have to look away as I sing to her and hold her head while she cries with no sound. A PICC line (central line) would be the route to go but because she got her infection from the central line in her umbilicus, they are hesitant to do this until she's in the OR.
Today I would have made my Grandma Kirk proud. She has always been great at advocating for what she or her family needs and making sure you hear her. We are so tired of being told something different by every doctor that comes by. I finally had enough of that today and had a bit of an emotional meltdown. I seem to have kicked up a bit of dirt in the NICU today and by the time we left, every doctor knew that we were DONE and wanted some real answers. So, after tracking down the surgeon, we were told that surgery is on the schedule for Wednesday morning. This was not what we had hoped to hear and we're not happy with the longer wait, but unfortunately we don't get a lot of say in this matter. Please pray that Hope stays infection free over the next 36 hours to be sure we don't make this journey any longer.
We were told today that the surgeon is not on the OR schedule for tomorrow. If he gets some OR time, we're praying that Hope would be his first priority. Shawn, my mom and I are all at our wits end with this waiting game and the run around of information. I spent the majority of the day in tears and I have a feeling that will continue for the rest of this week. Shawn is going stir crazy and seriously needs to play a game of soccer or ultimate frisbee, if anyone from Edmonton likes organizing that sort of thing...he would LOVE to attend! I wish I had the energy at the end of the day to hit the gym and get some good endorphins going through my body. Sadly, at the end of the day I feel like talking to no one, sitting in our room and eating! Not sure how well that's going to work for my post baby body, but I don't have the ambition to care at this point. Maybe a personal trainer can start working with me when I get back to Calgary :) .
We're going to try to take some time away from the NICU tomorrow, we know that surgery isn't going to happen and we need the break. Shawn is hoping to go for a long bike ride on his own and I'm hoping to get some sleep so I can pull myself together emotionally. We really appreciate the cards that have been sent to the house here, thank you to everyone that has sent those. One day when my life is less exciting, I would love to sit down and thank you all personally! Thank you for standing with us, even on the hard days when we're really down and feeling really negative.