We arrived in Denver and Landon did great! He slept the whole way (even on the super bumpy roads!) When we got here he wasn't super excited about the transfer and diaper change etc and calmed down for a few minutes but is getting mad again. I think he's hungry but they are evaluating him right now. So it will just take a little time to get adjusted and such but we're glad the journey is over! Thanks for the prayers. Now the docs here will just need to eval him, confirm the need for surgery and get it scheduled.
Showing posts with label Denver. Show all posts
Showing posts with label Denver. Show all posts
Sunday, October 2, 2011
Saturday, October 1, 2011
Change of Plans
I think in the last post Gary mentioned the echo that was going to be done this morning. Dr Brames came in a few hours after the echo was done and told us that he feels that Landon will need the BT Shunt (1st surgery). His sats have been trending down over the last few days and Dr Brames said this is an indication of some narrowing in Landon's heart where the diminished chamber is that causes his sats to get lower and lower. As he grows and his heart beats stronger (just like all babies) the pressure will become greater, leading to an increase in the narrowing and decrease of his sats. The BT Shunt will provide an extra source of blood to the lungs that although it will allow some of the blood to mix (which is normally a bad thing), will increase his sats and hopefully make him more pink.
This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.
The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.
It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.
This is a big change from planning to take him home today, but after some of the "incidents" of the past few days and the discussion back and forth on whether or not he needs to be on oxygen, we are not surprised that he's not coming home today. It's a very difficult line to walk and it seemed for a while to vary from shift to shift based on the nurse on whether or not the oxygen was needed. We knew Dr B would be able to give us a more definitive answer on that and how things were looking. It's unbelievably overwhelming to think about sending our 1 week old into heart surgery but we're trying to process 1 day (sometimes 1 hour) at a time and trust that God knows what's best for our baby and He has a plan in all of this. It is certainly not going to be easy; we feel like the past week has been incredibly difficult and we know it's only going to get harder from here. On the bright side, Dr B did think Landon's chances of doing well through the surgery were very good based on the facts that 1) he is a good size 2) he has been eating very well 3) his sats have been fairly good overall (meaning they could be much worse) and 4) the pulmonary valve and arteries are a good size. All of these things mean that he almost missed out on the first surgery but they also give us hope that he'll make it through surgery and recovery like a champ.
The plan right now is to transport him to Denver via ambulance tomorrow afternoon (he'll be on lines, oxygen, etc) and I (Allison) should be able to ride along in the front seat. They are working on scheduling the surgery, and we anticipate it will be Tuesday or Wednesday of this week. We should be able to stay at the Ronald McDonald house near Denver Children's Hospital as long as they have a room available.
It's probably obvious that we are physically, mentally and emotionally drained (I'm not even going to bother to check this post for typos) and we haven't even gotten to the most difficult part yet. God has given us strength so far to handle what we've faced and I know he'll continue to give us what we need for each day. There are tons of details that I'm forgetting right now because I'm too braindead but if they are important enough they'll rise to the surface later and we'll include them in a future post. Thanks so much for your support and concern. So many people have offer to "do" something and we're so appreciate of that- right now it's hard to really know what things we can have people do, so please know that if we think of anything besides prayer we will give you a call.
Sunday, June 26, 2011
Denver Appointments
So as Gary said, we had a few appointments in Denver on Friday afternoon. We got up there early and had plenty of time to park and find our way where we needed to go. We met an OB at University Hosiptal and a pediatric cardiolgoist for a fetal echocardiagram at Denver Children's Hopsital. The two doctors as well as the nurses at both offices were great. Both of the doctors were straightforward and knowledgeable, but also specifically made efforts to address the emotional side of what we're in the midst of. They reiterated that there is nothing we could have done to cause or prevent this heart defect and talked some about the things that we will need to be prepared to face together as we go through this process.
Between the two appointments, we had a few major "takeaways". One- the heart valve that dictates whether or not the baby needs that 1st surgery is looking good right now. Blood is flowing through it, but it doesn't look like too much. If there is too much or too little blood flowing through that valve at birth, then surgery will be required within the first 7-10 days. However, if this valve continues to remain a good size, there is a possibility that he could skip the first surgery altogether. This would be a wonderful thing to give him time to grow and get stronger before the 2nd surgery which now sounds like it would be around 4-6 months.
Two- If it is pretty certain the baby indeed will not need surgery then I may not have to go up to Denver to deliver; I could instead deliver at the hospital less than 10 minutes from our house as originally planned. This is still a very tentative thought, and the whole team of doctors will collaborate to make this decision as they continue to monitor the baby's heart. The possibility of delivering close to home is wonderful, but also a little bit frustrating, since now I'm not even sure which city I'll be in. Of course, being wherever Baby W can get the care he needs when he's born is the MOST important thing. All the same, I'm a planner, and having a set course of action helps me prepare, but I guess I need to get used to a lot of changing plans!
Three - if I do end up going to Denver for delivery and surgery for the baby, then they would want me to be up there staying close by the hospital at about 36-37 weeks. This came as a little bit of a surprise to Gary and I, because we hadn't anticipated I'd have to be up there that early. I could likely get hooked up with the Ronald McDonald house or something, but just the idea of being away from home for that much longer just throws me off. However, if it means that the baby can be in as controlled of a setting as possible with the care he needs close by, then I'll do whatever I need to!
So overall, the day was filled with some GREAT news that the baby might not have to go into surgery right away and some unexpected news that if I might have to get up to Denver a lot earlier than we thought (if I end up there). Overall, we feel great about the team of doctors that we have in both cities and the care that will be provided no matter where we end up.
After a long afternoon of appointments, we enjoyed a nice dinner at D Bar in Denver. It's just a delightful restaurant I've been to several times that Gary hasn't been to so I wanted us to go together. We enjoyed some tasty food and had a good chance to process some of what we heard. (There was a lot, believe me, this is the cliffs notes version.) Now we just wait for more fetal echos in several weeks and hopefully the doctors will be able to make the call about where they want me and when!
Allison
Between the two appointments, we had a few major "takeaways". One- the heart valve that dictates whether or not the baby needs that 1st surgery is looking good right now. Blood is flowing through it, but it doesn't look like too much. If there is too much or too little blood flowing through that valve at birth, then surgery will be required within the first 7-10 days. However, if this valve continues to remain a good size, there is a possibility that he could skip the first surgery altogether. This would be a wonderful thing to give him time to grow and get stronger before the 2nd surgery which now sounds like it would be around 4-6 months.
Two- If it is pretty certain the baby indeed will not need surgery then I may not have to go up to Denver to deliver; I could instead deliver at the hospital less than 10 minutes from our house as originally planned. This is still a very tentative thought, and the whole team of doctors will collaborate to make this decision as they continue to monitor the baby's heart. The possibility of delivering close to home is wonderful, but also a little bit frustrating, since now I'm not even sure which city I'll be in. Of course, being wherever Baby W can get the care he needs when he's born is the MOST important thing. All the same, I'm a planner, and having a set course of action helps me prepare, but I guess I need to get used to a lot of changing plans!
Three - if I do end up going to Denver for delivery and surgery for the baby, then they would want me to be up there staying close by the hospital at about 36-37 weeks. This came as a little bit of a surprise to Gary and I, because we hadn't anticipated I'd have to be up there that early. I could likely get hooked up with the Ronald McDonald house or something, but just the idea of being away from home for that much longer just throws me off. However, if it means that the baby can be in as controlled of a setting as possible with the care he needs close by, then I'll do whatever I need to!
So overall, the day was filled with some GREAT news that the baby might not have to go into surgery right away and some unexpected news that if I might have to get up to Denver a lot earlier than we thought (if I end up there). Overall, we feel great about the team of doctors that we have in both cities and the care that will be provided no matter where we end up.
After a long afternoon of appointments, we enjoyed a nice dinner at D Bar in Denver. It's just a delightful restaurant I've been to several times that Gary hasn't been to so I wanted us to go together. We enjoyed some tasty food and had a good chance to process some of what we heard. (There was a lot, believe me, this is the cliffs notes version.) Now we just wait for more fetal echos in several weeks and hopefully the doctors will be able to make the call about where they want me and when!
Allison
Friday, June 24, 2011
Appointment in Denver Today
Today we have an appointment(s) in Denver. Please be praying that this goes well and that we can be put at ease through a strong relationship with the doctors we meet today. Allison will be posting later today (likely) the synopsis of the visit.
GW
GW
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December 2012