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bless her heart bless her heart sunday may 12 2013 big news i can update the details later but i thought i d at least post the most important thing if x ray looks good tomorrow and the doctor is comfortable with darla jane s food intake we will get to go home she s been up walking the halls and even walking up the stairs i can t even believe how she s bouncing back thank you for all the prayers posted using blogpress from my iphone posted by mauri at 4 06 pm 4 comments email this blogthis share to x share to facebook share to pinterest friday may 10 2013 today has been a busy day we got chest tubes pulled there is still too much fluid but the tubes weren t draining any of it so instead they ve increased her lasix dosage to hopefully take most of it off she is eating a bit we had a cup of yogurt and half a cup of applesauce little miss had an echo done without any help from meds and did so well and answer to prayers for sure and bonnie said it looked good and the icing on our cake little miss not only stood up but also took 2 baby steps it s all about the baby steps in the right direction go darla jane posted by mauri at 5 58 pm 5 comments email this blogthis share to x share to facebook share to pinterest thursday may 9 2013 on to a new day today little miss woke up not feeling so well she hasn t eaten anything and has been throwing up quite a bit we were able to give her an anti nausea med and hopefully that kicks in a helps her to feel better we are just keeping her on clear liquids for now but so far she s only wanted water her xrays looked ok there was a bit of fluid around her lungs which also shows by the amount of drainage still coming out of her two side chest tubes the middle one isn t draining too much so there is a chance we may get to pull that one this afternoon she does have an oxygen saturation of 85 on 3 4 liter of oxygen and it even got up to 87 for a little bit so far we are keeping our morning pretty low key with sleep and cartoons on tv posted by mauri at 10 04 am 5 comments email this blogthis share to x share to facebook share to pinterest wednesday may 8 2013 hi everyone we just wanted to let you all know how thankful we are for all of your prayers and happy juju dances xoxo posted by mauri at 7 42 pm 2 comments email this blogthis share to x share to facebook share to pinterest she s so got this just over 24 hours post op and we are up on the recovery floor little miss still has her chest tubes in but got two lines pulled and seems a bit more relaxed she really hasn t eaten much but is tolerating formula and clear liquids really well darlajanereallyisarockstar posted by mauri at 6 54 pm 1 comment email this blogthis share to x share to facebook share to pinterest our agitated princess sorry for the lack of updates from a heart health standpoint she is doing well the challenges we ve had have been trying to balance her pain meds and sedation to her happy place where she isn t too sedated and she isn t up mad at the world throwing herself around through the night we got the balance pretty close she was still up quite a bit but was much easier to calm down nathan was up with her throughout the night what an amazing dad he is i think the day with be spent trying to keep that balance as she still has all her lines and tubes in she has been doing a good job as slowing working through clear liquids without and throwing up please keep the prayers coming posted by mauri at 7 37 am 7 comments email this blogthis share to x share to facebook share to pinterest tuesday may 7 2013 doctorburchisarockstar we were able to talk to dr burch the man of the hour she did really well there were a few little things that weren t perfect per dr burch standards so that means 100 for everyone else we will be able to see her within the half hour and update more later tonight please don t stop the prayers now though the next little while is still critical to see how her body will respond to the new blood flow and the change in pressures i do want to say thank you all soo much for all the calls texts and continuing stream of pictures on facebook and insta from so many of our favorite people all day long it helped us more than you will know getting through the day with that visual representation of all the support that is behind us we love you all posted by mauri at 1 57 pm 8 comments email this blogthis share to x share to facebook share to pinterest older posts home subscribe to posts atom pretty little angel eyes our little darla jane was born on march 30th and was diagnosed within the first day of life with hypoplastic left heart syndrome we did not know anything about hlhs when she was born and knew very little about congenital heart defects at all over time we have learned more we have also been helped by others who have traveled a similar journey we hope this blog will help keep family and friends informed on how well she is doing as she travels along this journey in her life we also hope that as people read this blog we will be able to raise awareness for congenital heart defects as well as help others who might be traveling along a similar path if you have questions at all you can post them on this blog or email me at brewer mauri at gmail dot com what is hypoplastic left heart explination of hlhs easy to follow illustrations primary childrens hospital intermountain healing hearts followers blog archive 2013 24 may 14 big news today has been a busy day on to a new day hi everyone she s so got this our agitated princess doctorburchisarockstar by by bypass the heart lung bypass machine scar tissue ready go checked in tomorrow tomorrow 3 days april 5 march 1 february 4 2012 19 august 1 april 2 march 10 february 4 january 2 2011 115 december 5 november 6 october 5 september 32 august 9 july 8 june 2 may 9 april 38 march 1 picture window theme theme images by blue_baron powered by blogger