Waiting

Today was a long day filled with waiting, waiting and more waiting. We arrived at the hospital this morning and were able to spend a couple of hours with Annie before her surgery. We actually were able to hold her even though she was on the ventilator (sometimes they can bend the rules)- what a blessing to have that time with her to have her close and tell her how much we loved her before she went into surgery. All three of us received blessings that again brought comfort and peace for the long day ahead. A little before noon, Dr. Pribble, the anesthesiologist, came to take her to the O.R. We walked most of the way with him, wiping away tears and dreading kissing her goodbye. The time came for us to part ways and we whispered our love and goodbyes to this sweet daughter of ours. A kiss on her forehead and it was time for her to go. I thought it was hard to let my other kids go in to surgery to have tonsils removed or tubes put in their ears, but heart surgery is a whole different level of "hard to say goodbye." Thankfully, I knew how many prayers were going with her into that operating room and felt that all of heavens blessings would be with her and the surgeon.

It took almost an hour for the anesthesiologist to place the lines and for the team to prep her for surgery. At that point Dr. Burch's assistant, Annie (this could get confusing with 2 Annies) came out and let us know that he had made the initial incision and that the surgery was underway. After that she came out every hour to tell us how things were progressing. As the hours passed she let us know as Dr. Burch closed the hole between the ventricles, moved the pulmonary artery in front of the aorta (in order to relieve some of the pressure on her airways) and placed the conduit with a valve in it. By about 5 PM, he had finished these procedures, Annie (ours) was off of the bypass machine, and they were doing an echocardiogram to ensure that everything was functioning properly. Annie (his) let us know that the echo looked good, but they were working to stop some bleeding and that Dr. Burch would come talk to us when he finished. A little after 7, a very tired Dr. Burch met us in the empty waiting room. By this time all the other families and even the desk clerks had gone home. He reviewed how things went and informed us of some things that might be cause for concern. First, and most importantly in the near future: while moving her pulmonary artery in front of the aorta should help to relieve the pressure on her airways, it is now putting some pressure on her superior vena cava that sits in front of the aorta. The most urgent concern is that because there is a catheter in that vein, the extra blood pressure could increase her chance of having a blood clot go to her brain. They will take the catheter out as soon as possible, probably in the next 24-48 hours. Less urgent, but important still: if the pressure in the superior vena cava doesn't decrease to a tolerable level as the fluid and pressure in her chest cavity decreases, they will have to go back in to try to remedy this problem. He is hopeful that this will not be necessary, and even tonight the pressure in this vein was improving. Next he talked to us about some abnormalities in her anatomy that he found when he opened her up. The sac around the heart is called the pericardium. This sac separates the heart from the other organs and tissues in the body. He said that she does not have any pericardium on the left side, something he has never seen before. He was not sure of all the implications of this, but felt that it would likely be tolerable as many patients have pieces of the pericardium removed as part of various heart surgeries. Because this sac is missing, her left lung is pressing right up against the heart and the heart is somewhat misshapen. Because of this, when he went to replace the valve, he found that the artery there was laying nearly horizontal, whereas it would normally be almost vertical. This required him to be somewhat creative in placing the new valve and he even changed the entry point into the heart a little bit in an effort to straighten it some. He felt that everything there would still function fine but might raise some eyebrows when she needs to have the valve replaced. Also, because the sac is missing on the left side, he was unable to see a nerve that he usually locates and avoids. This nerve feeds the diaphragm. He said that just because he couldn't see it, doesn't mean it is not there, and he didn't want to risk damaging it by hunting for it. We will know when she comes off the ventilator if this is an issue and deal with it then if it is. The last unexpected thing that he found was another hole in her heart. This one was between the left and right atrium. He stitched it up, leaving just a very small hole, meant to relieve some of the workload of the left atrium for now and likely to close in time.

Even with all the waiting we did today, there will be lots of waiting still to come. We are so grateful that she came through the surgery today, but know that she has many milestones to reach before we can take her home or even hold her again. We were told that for the first 5-7 days following surgery, we will feel like we are holding our breath. Dr. Burch said that the major benchmarks are: 1. 48 hours post surgery; 2. closing her chest (they had to leave it open to allow the swelling to go down so that there is not too much pressure on her heart when they do close it). 3. taking her off the ventilator- this one is extra big for her because of all of her airway issues; and 4. moving to a room outside of the CICU. All of these goals have to be reached before we can bring her home again. We were told to plan on her being in the hospital for another month or so. And so, we wait and pray- for her to recover from all the trauma that her little body has endured today; for her to reach all of these benchmarks; for her to no longer have to work for every breath she takes; and to bring her home and let her grow big and strong after all.

Before I finish this post, I just feel a real need to express my gratitude to all of you. To our family, our friends, our ward members and neighbors, to people that we have never even met that hear our story and include us in their prayers: I just want to say thank you for helping us lift a burden that is way too heavy for one person or one family to carry on their own. I have always considered myself to be a very independent person, able to deal with whatever life throws at me. This is one of those times where I have been unable to do it all and really needed help. I can't say enough how much it means to me and my family that you have all stepped right up and filled in the gaps where we just can't: driving carpools; tending my kids; making meals, doing my laundry (even my whites!); bringing in groceries; going to the temple with us in mind; calling or emailing to say you care; bringing treats or sending a card; weeding my yard with its' way too many flower beds; helping us finish 2 bedrooms in the basement; cleaning my house; flying into town to watch my kids; dropping everything to help when we have needed it; showing up at the hospital to visit; and mostly, just showering us with love and offering so many prayers in our behalf. Without all of you, I know I would be a complete wreck (and so would my house). Thank you.