Wednesday, January 30, 2013
The doctors and nurses have been amazing as has Rev. Ryan Ogrodowicz, who has been providing much needed pastoral care for our family.
Tuesday, January 29, 2013
Surgery is set for tomorrow morning at 8am. It will be long and complicated one, 6-8 hours. Right now Matilda is doing somewhat ok, and they will be working on stabilizing her as much as possible before surgery. The days after surgery will be very much up and down, and we will probably not be updating the blog very. Thank you all for your prayers and concern. We appreciate it very much.
Matildas hjärtoperation är planerad till i morgon kl 08. Operationen är komplicerad och tar 6-8 timmar. Just nu mår hon någorlunda ok, och de kommer att fortsätta att stabilisera henne under natten. Dagarna efter operationen kommer att vara väldigt mycket upp och ner, och vi kommer antagligen inte att uppdatera bloggen väldigt mycket, men vi är tacksamma för alla förböner.
Things have changed, but not in an unexpected way. Matilda has required cardio version (to have her heart shocked) twice in the last hour and a half due to an erratic beat. Her blood pressure also lowers when they attempt to ween the Dopamine. The heart surgery has been moved up to tomorrow morning.
She is still very cute though.
Monday, January 28, 2013
Thank you to all who are helping us through this. As we speak two amazing women from Grace Lutheran Church are driving Edith from Burkburnett to Haslet to stay with friends. We couldn't have done all of this without everyone's help.
Vi är nu på sjukhus i Fort Worth. I morgon kl 7.30 kommer de att göra kejsarsnitt. Vid dagens kontroll såg läkaren lite vätska runt hjärtat, och hjärtrytmen var inte heller så bra som önskat. Just nu är dock läget stabilt.
Vi är så tacksamma för all hjälp och alla förböner. När detta skrivs är två underbara damer från församlingen på väg med Edith till några vänner som bor här i närheten. Weslie kommer att åka dit i kväll för att natta henne. Vi skulle inte klara av det här utan all hjälp.
Monday, January 21, 2013
Wednesday, January 16, 2013
Wednesday, January 9, 2013
We are now in week 33 and today we had another appointment with the cardiologist, Dr Roten, and we were also able to meet with the surgeon, Dr Tam. Matilda is still alive and growing, and shows no signs of heart failure. The right atrium keeps growing though, and the size is of the heart is now an enormous 75 % of the chest cavity. Because of this, the lungs are very small and it is uncertain whether there will be enough healthy lung tissue for her to survive. We will have to wait until she is born to see how the lungs are doing, but she will need to be intubated and put on a ventilator to expand the lungs and try to get them to function. If that works, she will need surgery on her heart after 2-3 days (and more later if everything goes well). So our little Matilda continues to surprise everyone. No one had thought she would still be alive. Her heart is larger and lungs smaller than any of the doctors have seen before. Her heart defect is also very rare (especially in combination with Down Syndrome) - they only see one of these per year at Cook Childrens' Hospital, which is very little considering how big the hospital is. We have truly been blessed with a very unique child, and despite the heartache and worries, we would not want to be without her. Thanks for all your prayers, and please continue to pray for us. We need them all!