The past week has been pretty uneventful as far as things go. That is considering being away from everyone and everything you know. We have had several visits to Stanford's Lucille Packard Children's Hospital. The last was on Friday, August 8, 2008 where we had a fetal echo. Admittedly, I was hoping for some miraculous change. The echo failed to provide such a result. His left ventricle is still smaller than the right and continues to be poorly functioning.
Fortunately, the regular ultrasound showed no further problems with the baby.
Ernie left to go back home today. Jordyn starts school tomorrow and we are in a waiting game to see if Matthew can enroll in Head Start. As we found out, Head Start is primarily for low income children. Those who can least afford things are allowed in first and if there is any room, approximately 5% of other children may be allowed to attend as well. This didn't look good for us, but again some friends of ours are trying to "pull some strings" to get him in. He would be attending the same school as Jordyn and since we will be away so much, it would probably be the best thing for us. The kids just go back from their trip to Mexico this past Monday. I am so jealous that Ernie got to see them-it just breaks my heart that I won't be seeing them until who knows when. Thankfully, my aunt is there with my Mom and the kids will be in the best of care. We've had so many people call to wish us well and offer us help back home. It means so much to know how much support we have. I am so thankful to all of you.
Tomorrow I will visit the perinatologist. I imagine she will discuss the plan for the baby once he is born. It is amazing the number individuals who will be involved in the care, I can't even imagine how it all gets coordinated.
I met a Aunt/Grandmother and her daughter today who have a nephew that just underwent his third surgery here at Stanford. He has was is known as pulmonary atresia-from what his Grandmother says, he was born without a pulmonary artery. Dr. Hanley, who will be performing the surgery on our baby, has been the chief surgeon for her grandson. His surgery was this past Wednesday and seemed to go well. They were replacing a shunt in his heart. After time, shunts that are placed in the heart are outgrown and therefore there is a need to replace them. His case went from good to bad as his diaphragm was nicked during surgery and he only has one lung. This has made it difficult for him to come off the respirator. His Grandmother told me that they tried to take a tube from his lung out and he started to suffocate. She also confided that Dr. Hanley told her this surgery is merely to prolong his life, it is not a permanent fix. Of course, hope is what they have had all this time since he was diagnosed at approx 18 months. He is now 3.
Sadly, this is what we will be facing as well-not a fix but a chance to prolong the baby's life. From what I have read, surgery for HLHS has been done successful for approximately the past 10 years. More children have been surviving, but the oldest are merely in their 20's. What a joy it would be to have your child alive to at least then.
Another bit of good news came to us as we were able to move into the Ronald McDonald House. The house is especially for children and their families who will be undergoing surgeries of all kinds here in Palo Alto. As you can imagine the waiting list to get in is extremely long and goes on for months. So instead of having to pay almost $900.00 per week for our stay we will be paying $70.00 per week. What a blessing!! The house is near the hospital and across the street from the Stanford Mall. The mall has high end stores such as Louis Vuitton, 7 for All Man Kind, Macy's, Neiman Marcus, etc. Many of the people that stay at the house take a walk across the street and just stroll this beautiful outdoor mall. I would hazard to say, that not many of them do much shopping at those high end places. We probably frequent the Gap or some of the other chain stores we find back home.
Another common thing around here are BMW's. This has to be the BMW capitol of the world-other than in Germany of course. There a tons of them! There are a fair share of Mercedes as well, but the smaller class BMW's are everywhere! One thing you don't see around here much are trucks. We saw a dually the other day and that really stood out.
Considering everything, this is a very nice place.
Fortunately, the regular ultrasound showed no further problems with the baby.
Ernie left to go back home today. Jordyn starts school tomorrow and we are in a waiting game to see if Matthew can enroll in Head Start. As we found out, Head Start is primarily for low income children. Those who can least afford things are allowed in first and if there is any room, approximately 5% of other children may be allowed to attend as well. This didn't look good for us, but again some friends of ours are trying to "pull some strings" to get him in. He would be attending the same school as Jordyn and since we will be away so much, it would probably be the best thing for us. The kids just go back from their trip to Mexico this past Monday. I am so jealous that Ernie got to see them-it just breaks my heart that I won't be seeing them until who knows when. Thankfully, my aunt is there with my Mom and the kids will be in the best of care. We've had so many people call to wish us well and offer us help back home. It means so much to know how much support we have. I am so thankful to all of you.
Tomorrow I will visit the perinatologist. I imagine she will discuss the plan for the baby once he is born. It is amazing the number individuals who will be involved in the care, I can't even imagine how it all gets coordinated.
I met a Aunt/Grandmother and her daughter today who have a nephew that just underwent his third surgery here at Stanford. He has was is known as pulmonary atresia-from what his Grandmother says, he was born without a pulmonary artery. Dr. Hanley, who will be performing the surgery on our baby, has been the chief surgeon for her grandson. His surgery was this past Wednesday and seemed to go well. They were replacing a shunt in his heart. After time, shunts that are placed in the heart are outgrown and therefore there is a need to replace them. His case went from good to bad as his diaphragm was nicked during surgery and he only has one lung. This has made it difficult for him to come off the respirator. His Grandmother told me that they tried to take a tube from his lung out and he started to suffocate. She also confided that Dr. Hanley told her this surgery is merely to prolong his life, it is not a permanent fix. Of course, hope is what they have had all this time since he was diagnosed at approx 18 months. He is now 3.
Sadly, this is what we will be facing as well-not a fix but a chance to prolong the baby's life. From what I have read, surgery for HLHS has been done successful for approximately the past 10 years. More children have been surviving, but the oldest are merely in their 20's. What a joy it would be to have your child alive to at least then.
Another bit of good news came to us as we were able to move into the Ronald McDonald House. The house is especially for children and their families who will be undergoing surgeries of all kinds here in Palo Alto. As you can imagine the waiting list to get in is extremely long and goes on for months. So instead of having to pay almost $900.00 per week for our stay we will be paying $70.00 per week. What a blessing!! The house is near the hospital and across the street from the Stanford Mall. The mall has high end stores such as Louis Vuitton, 7 for All Man Kind, Macy's, Neiman Marcus, etc. Many of the people that stay at the house take a walk across the street and just stroll this beautiful outdoor mall. I would hazard to say, that not many of them do much shopping at those high end places. We probably frequent the Gap or some of the other chain stores we find back home.
Another common thing around here are BMW's. This has to be the BMW capitol of the world-other than in Germany of course. There a tons of them! There are a fair share of Mercedes as well, but the smaller class BMW's are everywhere! One thing you don't see around here much are trucks. We saw a dually the other day and that really stood out.
Considering everything, this is a very nice place.
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