Update on Arianna

first of all, david and i want to thank all of you for your prayers for our family this past week. we have been so overwhelmed with the support of the body of Christ, people we know and even those we don't know.

david and i drove home last night and i am resting at home today. there is much to do, but my friend jessica came over and helped me out. david had to go into work at the country club today, and it will most likely open this weekend. this means that he will not be able to go to danville as much to see arianna before she comes home. but it is good in that he will finally be back at work and we will not need to rely on his unemployment checks anymore. i will be able to go down and see her alot this week due to other friends' willingness to drive me and spend their day with me.

i want to explain a little more about what arianna had and how she is doing. we finally found out the name of the heart defect that she had. it is called hemitruncus. every heart has a main pulmonary artery and off of that branches the left and right pulmonary arteries that bring de-oxygenated blood to the left and right lungs where it gets oxygenated and sent out to the body. what arianna had, was her right pulmonary artery was coming off of the aorta instead of the main pulmonary artery. this was, in turn, bringing already oxygenated blood to her right lung. because of this, the heart had to work harder to get the blood oxygenated through the left lung only. it caused alot of high pressure in her lungs and gave her pulmonary hypertension. we found out that it is a very rare defect and hard to find alot of information about. the dr. told us that in their research, they came across a study done in scotland about hemitruncus. in the last 29 years, they have only been able to find 9 cases of it. another dr. told us that in all of the thousands of births each year in boston, they only have 1 case of it a year. we also found out that her surgeon, dr. pourmaghadam (pour-ma-ga-dahm), has done 1 other surgery exactly like this before. at first, this was not very reassuring, but when we realized how rare this is, we felt that God had directed him to us since he has done it before. it is rare that a heart surgeon would ever get to operate on 1 of these cases, let alone 2. he did however, explain that essentially, the operation would be pulmonary reconstruction, and this is something that he does all the time. he went over in great detail what he would be doing, how exactly he would detach and reattach the artery and what they would need to do to her for this surgery. in order to prepare her for the surgery, after the anesthesia, they would cool her body down to 77 degrees to slow her metabolism and protect her organs. then they would put her on a heart and lung machine while they worked on her heart. when they were done, they would warm her body back up, suture her closed and then give her a blood transfusion. and then she would be done. when we saw her, she was a maze of tubes all over her. she had 7 lines directly connected to her heart still (3 tiny i.v.'s and 4 external pacemaker wires). she had 2 drainage tubes coming out of her abdomen that were draining excess fluid from around her heart and about 4 peripheral i.v.'s. she was also on a ventilator, which means she had a breathing tube down her throat. this all took place last thursday. as of yesterday, monday, she had all of those lines taken out of her except 3 i.v.'s. today, they took out another one, so she is left with 2. they have weened her off of almost all her medication and yesterday they started feeding her again. she had not eaten since i last breastfed her the morning after she was born, when they took her to danville. it had been over a week. the nurse let me bottle feed her for the first time yesterday, and she did ok. the dr. said it would be a learning process for her to know what to do. since then, the nurse has told us she is downing that milk every time feeding comes! she's doing really really well with it! this is the last thing she needs to do well in before they will let her go home. once she is established in her feeding and is getting enough calories and gaining weight, they will release her. dr. pourmaghadam also told us yesterday, that he wants the nurses to get her up to par with the feeding, 2 or 3 days, and then he wants me to stay at the hospital and room in with her and take over the feeding! it will be better for arianna and will help her recover even faster. so we are thinking maybe thurs. or fri. of this week, i will go down to stay, and hopefully, she will be able to go home early next week! the way she's doing, she should definitely be home before easter!

thank you again so much for all of your prayers. david and i have had the hardest week of our lives and still feel stressed out. it has been evident to us that we have been lifted in prayer. there were nights when we would break down and cry and not know how we could go on another day. and the next morning God would give us hope and comfort. i still have my emotional swings, as i am still dealing with postpartum hormones. i am trying to get my rest today, and hopefully will have enough strength to stay down there without dave. i don't know how i would've done this without him. he has been a rock by my side, even when we both cry. this trial has strengthened our marriage in a way that couldn't have happened any other way. and even though things are looking brighter, it is not over. arianna still is not with us, and we miss her. i would ask that you would pray that she continues to eat well and gain strength and that her heart continues to be strong. pray that david and i will have the strength to make it through another week without her and be patient until she is well enough to come home.

we were not able to find internet access in danville, so while i am away, david will keep his blog updated as much as he can. www.davidasiegrist.blogspot.com . he has a post there now with some more information you might like to read. i will leave you with a few pictures of our last week.

she would suck on our thumbs when she was hungry. it was hard to see her rooting reflex, trying to latch on to something to eat. this gave us both a bit of comfort.

these 2 pictures were taken the morning of the surgery. it was the last time we got to hold her and was a bit hard to say goodbye when they took her in.