Just a quick post to let you know that all is well. Gaines has had a pretty good day today. A little fussy at times but over all, pretty good. As I type this he is at 23.5%. I'm not sure that he'll stay there since he just had his Pulmicort treatment for the evening and he tends to do really well right after that. However, his nurse said that she had him there before the treatment so maybe he'll stay there. I pray that it sticks. That's huge. That's only 2% away from room air. Please pray with us that Gaines is able to keep bringing his oxygen requirements down.
I'm still waiting to hear when the MRI is scheduled for. There is some discussion about whether or not it can be done on CPAP. Our doctor seems to think that it can be and his trying to work it out with respiratory and radiation. We'll see what happens.
Also, Gaines will be trying to take a bottle every other feeding now. I got to feed him yesterday and he took 8-10 ccs by mouth. It was so neat to feed him. Something so normal. It reminded me so much of when Reed was that small (actually Reed was never this small but you get the point).
I need to run for now. We are headed home for the evening.
Love to all,
Brittany
Monday, June 29, 2009
Sunday, June 28, 2009
Forgot...
There is another post below but I forgot to mention about Gaines' heart echo. He had a great report. His VSDs have always been tiny but they are even smaller now and the cardiologist didn't see any other cause for concern. She said the VSDs didn't look to be contributing to his oxygen requirement. It looks like we've avoided heart surgery. Just more proof that God hears and answers our prayers.
Sunday News
Hello all. Neither of us really got a chance to post anything yesterday. It was kind of a crazy day. Reed slept an hour late and we went to the grocery store before coming to the hospital (which is not as easy as jumping in your car and running up to the Publix. We walk about 10 blocks to get there and then carry our groceries home). Plus the metro is really slow due to maintenance...it was just a weird day. Gaines added to it by having a little fever and being inconsolable for most of the day. He was only quiet and settled about 20 minutes out of every hour yesterday and he had a temp of 38 C (I don't know what that converts to in Fahrenheit but 37 is 98.6 so it was a little high). And I don't mean he just kind of whimpered...something was wrong and he wanted the whole floor to know about it.
He cried like something was hurting him and when he'd finally wear himself out he'd breathe really hard to try and catch his breath. The doctor listened to his lungs and said they sounded good and his sats were great when he actually calmed down for a few minutes so I didn't feel like it was lung related. The doctors decided to quit giving him the caffeine he was getting (caffeine helps prevent any apneas). Apparently too much caffeine can cause you to be irritable and warm. They also cut back on his lasix (they had doubled his dose when he got back on them this week) because they thought he might be getting too dry. Apparently being too dry (they didn't use the word dehydrated so I'm not sure if too dry and dehydrated are the same thing in the NICU world) can make you irritable and warm as well.
By the end of the day he finally settled down and was at 25-26% oxygen with no fever but he gave us a little scare with all of that. The doctors also decided yesterday to do an MRI (sometime this week I think) to check his lungs for two possible problems. I don't know that they really believe he has them but since Gaines is not "typical" they are checking him for everything. They explained the two possibilities to me but I can't remember much about them. I figure if he has one of them I'll learn more than I ever wanted to know about it and I'm not going to waste my time worrying unless I have to.
Oh...and he probably has a hernia. Nothing to be worried about for now but if it doesn't correct itself it could mean surgery later on. Awesome.
Today has been a pretty good day for Gaines so far. He is resting well and was at 26% oxygen at my last check. I'm going back in about 30 minutes to help with his cares and do the kangaroo care. Please continue to keep Gaines and our family in your prayers. He has made some great progress this week and I pray that it continues. Please pray for patience and wisdom for Beau and me as well. We are still waiting for insurance to decide about a possible transfer home. I'm not sure how all of this works but I think they are waiting on information from my company. I did find out how much it would cost and wow. I hope we don't need to transfer home but if we do, I sure hope they find it in their hearts to pick up the tab for us.
Reed's doing well. I think he picked up a little summer cold for a couple of days but he seems better now. I had some family in town the last few days so he's enjoyed getting to spend some time with them. He amazes me everyday with how grown up he's gotten. God has really blessed me with a wonderful family...immediate and extended. I can't wait for Gaines to get out of here so he can meet all of them.
We are headed to church this afternoon and then to Five Guys for dinner. It's pretty much my new favorite place. I've been looking forward to it all week. I hope you all have a great Sunday.
Love to all,
Brittany
He cried like something was hurting him and when he'd finally wear himself out he'd breathe really hard to try and catch his breath. The doctor listened to his lungs and said they sounded good and his sats were great when he actually calmed down for a few minutes so I didn't feel like it was lung related. The doctors decided to quit giving him the caffeine he was getting (caffeine helps prevent any apneas). Apparently too much caffeine can cause you to be irritable and warm. They also cut back on his lasix (they had doubled his dose when he got back on them this week) because they thought he might be getting too dry. Apparently being too dry (they didn't use the word dehydrated so I'm not sure if too dry and dehydrated are the same thing in the NICU world) can make you irritable and warm as well.
By the end of the day he finally settled down and was at 25-26% oxygen with no fever but he gave us a little scare with all of that. The doctors also decided yesterday to do an MRI (sometime this week I think) to check his lungs for two possible problems. I don't know that they really believe he has them but since Gaines is not "typical" they are checking him for everything. They explained the two possibilities to me but I can't remember much about them. I figure if he has one of them I'll learn more than I ever wanted to know about it and I'm not going to waste my time worrying unless I have to.
Oh...and he probably has a hernia. Nothing to be worried about for now but if it doesn't correct itself it could mean surgery later on. Awesome.
Today has been a pretty good day for Gaines so far. He is resting well and was at 26% oxygen at my last check. I'm going back in about 30 minutes to help with his cares and do the kangaroo care. Please continue to keep Gaines and our family in your prayers. He has made some great progress this week and I pray that it continues. Please pray for patience and wisdom for Beau and me as well. We are still waiting for insurance to decide about a possible transfer home. I'm not sure how all of this works but I think they are waiting on information from my company. I did find out how much it would cost and wow. I hope we don't need to transfer home but if we do, I sure hope they find it in their hearts to pick up the tab for us.
Reed's doing well. I think he picked up a little summer cold for a couple of days but he seems better now. I had some family in town the last few days so he's enjoyed getting to spend some time with them. He amazes me everyday with how grown up he's gotten. God has really blessed me with a wonderful family...immediate and extended. I can't wait for Gaines to get out of here so he can meet all of them.
We are headed to church this afternoon and then to Five Guys for dinner. It's pretty much my new favorite place. I've been looking forward to it all week. I hope you all have a great Sunday.
Love to all,
Brittany
Friday, June 26, 2009
Cautiously Optimistic
Today we are cautiously optimistic. Last night Gaines' oxygen requirements were between 26% and 27 %. This afternoon he was at 25% for about five hours and he is currently between 25% and 27%. Ove the past 48 hours he has definitely moved in the right direction. You may remember that his oxygen requirement rose to 40% just 72 hours ago because the doctors stopped giving him lasix. The past 48 hours acheivements might be due to the fact he is getting lasix again and a larger dosage than before. However, the decreased oxygen requirements might just be Gaines getting better. Brittany and I believe it is probably a little of both. Either way, we're just cautiously optimistic things are moving in the right direction.
Brittany was able to do the "kangaroo care" twice today and held Gaines skin-to-skin for a total of about 3 hours. I know she really enjoys doing this with Gaines. The doctors have actually encouraged me to do it and I did yesterday. It was a little weird to be the only dad in the NICU doing this, but I figure I will be doing it a lot once Brittany leaves in two weeks. Which reminds me, please pray for peace and understanding when that time comes. This journey has been extremely difficult but we have been on it together. We are both very aware that she and Reed are leaving in two weeks. Although we know God will comfort us and see us through this new phase of our journey, we also know being apart will present new challenges and difficulties.
Beau
Brittany was able to do the "kangaroo care" twice today and held Gaines skin-to-skin for a total of about 3 hours. I know she really enjoys doing this with Gaines. The doctors have actually encouraged me to do it and I did yesterday. It was a little weird to be the only dad in the NICU doing this, but I figure I will be doing it a lot once Brittany leaves in two weeks. Which reminds me, please pray for peace and understanding when that time comes. This journey has been extremely difficult but we have been on it together. We are both very aware that she and Reed are leaving in two weeks. Although we know God will comfort us and see us through this new phase of our journey, we also know being apart will present new challenges and difficulties.
Beau
Thursday, June 25, 2009
Better Day
Today has been a much better day so far. Last night Gaines was between 28-30% and this morning he was at 28% with great sats so I'm hopeful that he might hit 27% today. It is amazing how quickly the Lasix work. Yesterday afternoon he was back down to the low 30s.
I forgot to mention yesterday that the doctors wanted us to try the kangaroo care again. He told me about studies proving that the human touch can be healing. So, I tried it again and Gaines cooperated better this time. The only problem was that he was on Lasix by that point and his little diaper didn't seem to hold up to well so I got pretty wet. Gross I know, but I thought some of you might think it was funny. Beau sure did.
We are in better spirits today. Both of us got pretty down for a little while yesterday. It just hard to stay positive and keep going when there is no real end in sight. Please just keep praying for Gaines and our family. His heart echo is today. Pray that we get something positive out of it. Yesterday's x-ray didn't really tell the doctors too much. They did see that his heart was not any bigger which is a good sign against the congestive heart failure. People with CHF have bigger hearts because they have to work harder. This is good news that Gaines' didn't seem bigger but we should know more with the echo today.
Today should be a good day. I have two uncles and an aunt in town and we are looking forward to seeing them. We love having visitors. I think that's about it for now. Reed's napping so I need to take care of a few things.
I forgot to mention yesterday that the doctors wanted us to try the kangaroo care again. He told me about studies proving that the human touch can be healing. So, I tried it again and Gaines cooperated better this time. The only problem was that he was on Lasix by that point and his little diaper didn't seem to hold up to well so I got pretty wet. Gross I know, but I thought some of you might think it was funny. Beau sure did.
We are in better spirits today. Both of us got pretty down for a little while yesterday. It just hard to stay positive and keep going when there is no real end in sight. Please just keep praying for Gaines and our family. His heart echo is today. Pray that we get something positive out of it. Yesterday's x-ray didn't really tell the doctors too much. They did see that his heart was not any bigger which is a good sign against the congestive heart failure. People with CHF have bigger hearts because they have to work harder. This is good news that Gaines' didn't seem bigger but we should know more with the echo today.
Today should be a good day. I have two uncles and an aunt in town and we are looking forward to seeing them. We love having visitors. I think that's about it for now. Reed's napping so I need to take care of a few things.
Wednesday, June 24, 2009
Not The Best Day
Today hasn't been Gaines' best day. His oxygen is back at 40% and he's breathing pretty hard. The doctors feel like it's because he quit getting the Lasix on Monday. That was my immediate thought as well but this step backwards has been disheartening (to say the least). Today he'll be getting a double dose of Lasix and I feel confident that it will help but seeing 40% brought on a rush of disappointment. It makes me wonder when all of this will end. I got upset when I was talking to the doctor and nurse about it today. Its really hard for me to talk about him not getting better without crying.
The doctor told me that its really hard to treat Gaines because they don't know if they are treating him for Chronic Lung Disease or heart failure...she's says probably because its a little bit of both. She also confirmed what we'd been thinking, that transferring him home on a ventilator would be a major set back for him. This is because getting him back off the ventilator would be very tough. It just reminds me how hard it will be to even get him to a hospital back home.
I'm trying to keep in mind that this will end eventually. One day we'll be able to take our baby home. Its just really hard to focus on that when he's having a down day. When I was talking to one of the doctors she told me how hard it was for them because we kept looking to them for answers and they really didn't have any right now. It occurred to me that she's right...so many times we look to them for answers and I think maybe we haven't been looking high enough. Of course we are faithfully praying for Gaines but maybe we aren't relying on God for our answers. Maybe our mission here (whatever that is) isn't over yet.
I know that all of this is happening for a reason but stepping back and letting God run my life is one of the hardest things I've ever had to do. You wouldn't think that would be too hard of a task but if you really think about it, it is...for me anyway. It is so easy to get angry with God when things aren't going just like I'd like. Its in those times that I really have to focus myself on how good He's been to us through this. I'd love to list all the ways he's taken care of us but there are just too many to list. He has brought Gaines so far and I know that He'll see us through this storm. Beau reminds me all the time that the doctors are only reacting to Gaines and that its only because of God that Gaines is with us. The doctors here are wonderful but we know that they are only God's pawns.
Gaines' heart echo is still scheduled for tomorrow. They also did a chest x-ray on him today. Please pray that something positive will come out of these two things. If they don't show that things are getting better, I pray that they at least point to something that we can fix.
Please keep Gaines and our family in your prayers. Please pray that God will give us direction as we try and decide what is best for Gaines.
Love to all,
Brittany
The doctor told me that its really hard to treat Gaines because they don't know if they are treating him for Chronic Lung Disease or heart failure...she's says probably because its a little bit of both. She also confirmed what we'd been thinking, that transferring him home on a ventilator would be a major set back for him. This is because getting him back off the ventilator would be very tough. It just reminds me how hard it will be to even get him to a hospital back home.
I'm trying to keep in mind that this will end eventually. One day we'll be able to take our baby home. Its just really hard to focus on that when he's having a down day. When I was talking to one of the doctors she told me how hard it was for them because we kept looking to them for answers and they really didn't have any right now. It occurred to me that she's right...so many times we look to them for answers and I think maybe we haven't been looking high enough. Of course we are faithfully praying for Gaines but maybe we aren't relying on God for our answers. Maybe our mission here (whatever that is) isn't over yet.
I know that all of this is happening for a reason but stepping back and letting God run my life is one of the hardest things I've ever had to do. You wouldn't think that would be too hard of a task but if you really think about it, it is...for me anyway. It is so easy to get angry with God when things aren't going just like I'd like. Its in those times that I really have to focus myself on how good He's been to us through this. I'd love to list all the ways he's taken care of us but there are just too many to list. He has brought Gaines so far and I know that He'll see us through this storm. Beau reminds me all the time that the doctors are only reacting to Gaines and that its only because of God that Gaines is with us. The doctors here are wonderful but we know that they are only God's pawns.
Gaines' heart echo is still scheduled for tomorrow. They also did a chest x-ray on him today. Please pray that something positive will come out of these two things. If they don't show that things are getting better, I pray that they at least point to something that we can fix.
Please keep Gaines and our family in your prayers. Please pray that God will give us direction as we try and decide what is best for Gaines.
Love to all,
Brittany
Tuesday, June 23, 2009
Quick Update
I don't have much time right now but I wanted to let you all know that Gaines is having a pretty good day again. He did so well yesterday that the doctors decided to try and take him off some of his medicines. He is no longer on lasix or pulmicort (I know...he just got on it). They've taken him off the lasix to see if he can hold his oxygen without it. If he does, it means that his heart is not the problem. So far he's done fairly well without it. He's been at 33% all day but the doctor says that's fine. I really didn't understand why they'd be weaning medicine with him still needing oxygen. When he explained it to me this way I kind of understood. Plus lasix can be damaging to the body so if he doesn't need them, he shouldn't be on them.
Also, his heart echo is rescheduled for Thursday. I'm not really sure why...it just is. The nurse said something about trying to stay on a schedule. Who knows?
I held Gaines this morning and he is as sweet as ever. We've had a busy day and are off to dinner before we visit one more time and head "home". A special thank you to Karen in Virginia for the gift card. We were trying to decide what to do for dinner and we got it in the mail and it made our decision for us!
Thank you to everyone for all of your prayers. Please keep it up.
Love to all,
Brittany
Also, his heart echo is rescheduled for Thursday. I'm not really sure why...it just is. The nurse said something about trying to stay on a schedule. Who knows?
I held Gaines this morning and he is as sweet as ever. We've had a busy day and are off to dinner before we visit one more time and head "home". A special thank you to Karen in Virginia for the gift card. We were trying to decide what to do for dinner and we got it in the mail and it made our decision for us!
Thank you to everyone for all of your prayers. Please keep it up.
Love to all,
Brittany
Monday, June 22, 2009
We were not on the Metro
Some of you may be aware that two Metro trains collided today in DC and several people were injured and several people lost their life. This is to let you know that none of us were involved. My mother called me extremely worried after she saw the story on the news. I just thought I would let everyone know that we are okay.
Beau
Beau
Good Day
It seems that our boy might be starting to cooperate with us again. Not long after I posted yesterday's blog I checked in on him and his oxygen was down to 31%. I thought at first I was reading the thing wrong...I thought it said 37%...Nope. So then I thought they must have just given him extra lasix...Nope. He was doing it on his own. He's been between 32-29% since yesterday afternoon. He was at 29% when I left this morning. Beau is visiting now and I'm just holding my breath to find out if he's still in that range. Honestly I keep waiting for this bubble to burst and him to go back up. I'm praying that he'll hold onto this. I'm just excited that he's done this without the extra diuretics. It's been a good day.
This morning I found out that Gaines has been getting breathing treatments since Friday...not sure how I missed that. He's on Pulmicort which is what Reed gets twice a day (except in the summer) to control his asthma (Yes, on top of Gaines' current bad lungs, he'll probably have asthma too. Beau and Reed both had/have it). I don't know that the medicine is the cause for the better oxygen levels since he's been on it since Friday and he only started improving yesterday. However, I guess it could just take that long to work. Either way, he could go home on Pulmicort so I'm not that worried about it. I'm just so thankful for this progress!
The only thing about the progress is that it makes us hesitant to hold him...we don't want to jinx whatever it is that's got him doing well. Obviously we know better than that but you can't help but think it.
Gaines' heart echo is still scheduled for today. Please pray that it goes well and that we see signs of the VSDs closing. His neighbor in the NICU is getting one today too. She's only been in there for a little over a week now and I hear the nurses talking to her about so many things that we had to learn about. It's amazing to think back and realize that there are so many things that we were SO worried about that aren't concerns for us anymore.
We've got a couple pictures to post. We took some of Gaines yesterday with his eyes open and we wanted to show you our view last night as we walked home from church. Things are still going well with everything else as well. Reed is still doing great and our new living situation is going well. The couple we are staying with have a super-cute 2 year old so I'm excited for Reed to have a built in playmate (and to give this brother thing a practice run).
I think that's about it for now. I've got some emails I need to return.
Thank you all for your prayers. Please keep it up!
Brittany
This morning I found out that Gaines has been getting breathing treatments since Friday...not sure how I missed that. He's on Pulmicort which is what Reed gets twice a day (except in the summer) to control his asthma (Yes, on top of Gaines' current bad lungs, he'll probably have asthma too. Beau and Reed both had/have it). I don't know that the medicine is the cause for the better oxygen levels since he's been on it since Friday and he only started improving yesterday. However, I guess it could just take that long to work. Either way, he could go home on Pulmicort so I'm not that worried about it. I'm just so thankful for this progress!
The only thing about the progress is that it makes us hesitant to hold him...we don't want to jinx whatever it is that's got him doing well. Obviously we know better than that but you can't help but think it.
Gaines' heart echo is still scheduled for today. Please pray that it goes well and that we see signs of the VSDs closing. His neighbor in the NICU is getting one today too. She's only been in there for a little over a week now and I hear the nurses talking to her about so many things that we had to learn about. It's amazing to think back and realize that there are so many things that we were SO worried about that aren't concerns for us anymore.
We've got a couple pictures to post. We took some of Gaines yesterday with his eyes open and we wanted to show you our view last night as we walked home from church. Things are still going well with everything else as well. Reed is still doing great and our new living situation is going well. The couple we are staying with have a super-cute 2 year old so I'm excited for Reed to have a built in playmate (and to give this brother thing a practice run).
I think that's about it for now. I've got some emails I need to return.
Thank you all for your prayers. Please keep it up!
Brittany
This was the view we had last night as we walked home from Church.
Sunday, June 21, 2009
Happy Father's Day!
Good Morning!
We are at the hospital right now. Gaines is doing about the same. He's consistent if nothing else. He's at 35% oxygen and has been all through the night. They've decided to do another heart echo tomorrow. It may be too early to tell if his VSDs are closing but please pray that we are able to see some progress with those and that they are closing. Also, they quit the bottle feedings that they were trying. He's not doing so well with them and they were afraid that he'd aspirate so they stopped for a while. They say that him trying to take a bottle on CPAP is the equivalent to us trying to drink something with our head hanging out the window of a car. I'm a little disheartened about it but he'll get it eventually.
We had a great day yesterday with our friends. We flew a kite on the national mall right near the Washington Monument. Reed loved it. We also are about settled into our new place. This house is much nicer than our little apartment and has "real" furniture. It really makes me miss my own house.
Also, we went to a real grocery store this morning. It was nice and just like ours back home. I told Beau my first grocery shopping trip when I get home is going to be expensive. Things I don't even usually buy just seem so enticing.
We are headed to lunch with our friends. Hope you all have a great day!
Oh, and a special Happy Father's Day to my sweet husband, my awesome dad and my wonderful father-in-law. You all have helped me so much get through this crazy time and I am forever grateful.
We are at the hospital right now. Gaines is doing about the same. He's consistent if nothing else. He's at 35% oxygen and has been all through the night. They've decided to do another heart echo tomorrow. It may be too early to tell if his VSDs are closing but please pray that we are able to see some progress with those and that they are closing. Also, they quit the bottle feedings that they were trying. He's not doing so well with them and they were afraid that he'd aspirate so they stopped for a while. They say that him trying to take a bottle on CPAP is the equivalent to us trying to drink something with our head hanging out the window of a car. I'm a little disheartened about it but he'll get it eventually.
We had a great day yesterday with our friends. We flew a kite on the national mall right near the Washington Monument. Reed loved it. We also are about settled into our new place. This house is much nicer than our little apartment and has "real" furniture. It really makes me miss my own house.
Also, we went to a real grocery store this morning. It was nice and just like ours back home. I told Beau my first grocery shopping trip when I get home is going to be expensive. Things I don't even usually buy just seem so enticing.
We are headed to lunch with our friends. Hope you all have a great day!
Oh, and a special Happy Father's Day to my sweet husband, my awesome dad and my wonderful father-in-law. You all have helped me so much get through this crazy time and I am forever grateful.
Saturday, June 20, 2009
We have Moved
Thank goodness, we are finished moving. It is amazing how much stuff we have accumulated in three months. All of our stuff filled the trunk and backseat of a Toyota Camry.
Brittany and I are now at the hospital and Gaines is doing about the same. Oxygen requirements have been between 32 & 35%. His weight seems to fluctuate every day but today he is 5 pounds 2 ounces. The doctors were able to get enough blood yesterday for the genetic disorder test. They sent the blood work to John Hopkins yesterday so we should know the results late next week. We are trying not to think about this test but how do you keep something like that out of your thoughts?
We might not have another update until tomorrow. Some good friends of ours have driven up from North Carolina to see us. They will be here in about a 1/2 hour. We are going to introduce them to Gaines and then visit this afternoon. Again, thank you to all for your prayers.
Beau
Brittany and I are now at the hospital and Gaines is doing about the same. Oxygen requirements have been between 32 & 35%. His weight seems to fluctuate every day but today he is 5 pounds 2 ounces. The doctors were able to get enough blood yesterday for the genetic disorder test. They sent the blood work to John Hopkins yesterday so we should know the results late next week. We are trying not to think about this test but how do you keep something like that out of your thoughts?
We might not have another update until tomorrow. Some good friends of ours have driven up from North Carolina to see us. They will be here in about a 1/2 hour. We are going to introduce them to Gaines and then visit this afternoon. Again, thank you to all for your prayers.
Beau
Friday, June 19, 2009
Packing...
So far things are going well today. Gaines was at 35% oxygen this morning which I'm fine with for now. After talking to the doctor yesterday I came to realize that his decrease in oxygen was only due to the diuretics and that the slight increase is because they reduced them because of his electrolyte issues. I didn't see the big deal with the electrolytes. I knew they were messed up but I felt like since they were giving him back the things he was losing, it was ok. Apparently the Lasix can be bad for your kidneys, bones etc. if you can't maintain your electrolytes.
Gaines got a blood transfusion early this morning and they aren't really pushing him on his oxygen right now. They are kind of giving him a rest at 35%. He's had a stressful last couple of days. They had a hard time getting his IV in for the blood, an eye test (more on that later), and they've tried twice now to take blood from him for his genetic test and can't get it. They need 4 ccs of blood for that (which is a lot for him) and his little veins aren't cooperating.
He had a great eye test Wednesday. No signs of retinopathy...basically his eyes are formed correctly. So that's one less thing to worry about.
Gaines' doctors yesterday were very positive about his future. Provided he doesn't have that genetic disorder, he should grow up to be a happy and healthy little boy. They are confident that he doesn't have any major developmental problems (other than the lungs that should heal). The doctors explained again that while he's got hurdles to overcome now with his lungs, we should be thankful that once those are cleared, he'll be healthy. I'm so thankful for that.
I've kind of resigned myself to the fact that Reed and I will be going home without Beau in three weeks. I'm hoping that by then Gaines will be ready to transfer to an Alabama hospital on nasal cannula or will be finishing up his stay at GWUH...hopefully just working on his feedings. If not, then Reed and I will just become weekend jet-setters flying between Montgomery and DC. The good news is that I should have plenty to do at home to keep us busy. I know that while it will be very hard, its the responsible thing to do.
In other news, we are packing today. Not to go home but to move into the home of a family that we've gotten to know here in DC. We have been very blessed to stay near the hospital for the 8 weeks that Gaines has been here but we feel that it's time for us to move on. This living arrangement has been wonderful but is very expensive. We just think we should save the money we would be spending on this apartment/hotel for the extra expenses we'll incur once we get home...like a nanny. That wasn't exactly in the budget I had worked out when we planned on Gaines. Beau and I feel like God has provided these people to us and I'm not going to be the one to tell God thanks, but no thanks. :)
Oh, last night I got to have dinner with some Andalusia folks. A few couples from my home town were up here for an event and invited me to dinner. I love seeing familiar/friendly faces and it was nice to eat a good dinner out. I can't tell you how much we appreciate people that are visiting the area looking us up. Also, we have really good friends coming to visit tomorrow so it should be a fun day.
I need to run...got to get back to the packing. Thank you all for keeping up with us and please continue to keep Gaines in your prayers...especially that he doesn't have the genetic disorder.
Love to all,
Brittany
Gaines got a blood transfusion early this morning and they aren't really pushing him on his oxygen right now. They are kind of giving him a rest at 35%. He's had a stressful last couple of days. They had a hard time getting his IV in for the blood, an eye test (more on that later), and they've tried twice now to take blood from him for his genetic test and can't get it. They need 4 ccs of blood for that (which is a lot for him) and his little veins aren't cooperating.
He had a great eye test Wednesday. No signs of retinopathy...basically his eyes are formed correctly. So that's one less thing to worry about.
Gaines' doctors yesterday were very positive about his future. Provided he doesn't have that genetic disorder, he should grow up to be a happy and healthy little boy. They are confident that he doesn't have any major developmental problems (other than the lungs that should heal). The doctors explained again that while he's got hurdles to overcome now with his lungs, we should be thankful that once those are cleared, he'll be healthy. I'm so thankful for that.
I've kind of resigned myself to the fact that Reed and I will be going home without Beau in three weeks. I'm hoping that by then Gaines will be ready to transfer to an Alabama hospital on nasal cannula or will be finishing up his stay at GWUH...hopefully just working on his feedings. If not, then Reed and I will just become weekend jet-setters flying between Montgomery and DC. The good news is that I should have plenty to do at home to keep us busy. I know that while it will be very hard, its the responsible thing to do.
In other news, we are packing today. Not to go home but to move into the home of a family that we've gotten to know here in DC. We have been very blessed to stay near the hospital for the 8 weeks that Gaines has been here but we feel that it's time for us to move on. This living arrangement has been wonderful but is very expensive. We just think we should save the money we would be spending on this apartment/hotel for the extra expenses we'll incur once we get home...like a nanny. That wasn't exactly in the budget I had worked out when we planned on Gaines. Beau and I feel like God has provided these people to us and I'm not going to be the one to tell God thanks, but no thanks. :)
Oh, last night I got to have dinner with some Andalusia folks. A few couples from my home town were up here for an event and invited me to dinner. I love seeing familiar/friendly faces and it was nice to eat a good dinner out. I can't tell you how much we appreciate people that are visiting the area looking us up. Also, we have really good friends coming to visit tomorrow so it should be a fun day.
I need to run...got to get back to the packing. Thank you all for keeping up with us and please continue to keep Gaines in your prayers...especially that he doesn't have the genetic disorder.
Love to all,
Brittany
Thursday, June 18, 2009
The meeting with the Doctors
So the air conditioner in our room got fixed and we had the meeting with the two attending NICU doctors this afternoon. However, before I summarize the meeting I want to mention something that happened today.
A couple of days ago, the doctors asked if Brittany and I could meet them on Thursday to discuss Gaines' progress and the plan going forward. They wanted us to be there together...slight problem, who is going to watch Reed. We tossed around a few ideas and then decided to meet with the doctors during Reed's nap. We would simply put him in his stroller (asleep) and take him with us. Problem solved.
As Brittany mentioned in her previous post, things did not go according to plan. Basically the doctors could not meet with us during Reed's nap. We had no idea what to do. There was no way two NICU doctors were going to be so entertaining that he would sit there quietly during our meeting. Our best option was to let Brittany go to the meeting and for me to listen via cell phone.
Brittany and I were both a little frustrated with the situation. While we waited to meet the doctors she posted a blog about it. Within 1o minutes of her posting the blog I got an email from one of the few people we know in DC. She said she had just read our blog, her work was really slow and that she would meet us at the hospital and watch Reed while we met with the doctors. Unbelievable.
Sometimes God works so discreetly that it might be months or even years before you realize what happened. Other times, its like a slap in the face. This was definitely a slap in the face. God reminded us that with all the looming questions ahead us that He will provide for us, no matter how small or how big.
To some of you this story might not seem like that big of a deal. To us, it was such an obvious example of God working in our lives that we had to share the story.
Now on to the meeting. This morning the doctors tried switching Gaines from the CPAP to a nasal cannula. They did this for a couple of reasons. First, if he is to be transferred it would be much easier if he was on nasal cannula. If Gaines is on CPAP he would have to re-intubated and put him on the ventilator to be transferred. Second, it would be easier for Gaines to begin bottle feeding if he could be switched to nasal cannula during the bottle feedings. Long story short, he did not tolerate a nasal cannula at all. After only five minutes on the nasal cannula he had to be switched back to the CPAP.
The doctors then told us that Gaines' progress at this point would be satisfactory for a baby that was maybe only 1 pound at birth. His birth weight was over 3 pounds and therefore they consider his progress not normal. They were quick to remind us of all the positives he has had in the past eight weeks but then consulted us regarding future treatment. Due to his lung progress, they have sent some blood work to John Hopkins to be tested for a rare genetic disorder. They were quick to tell us that there is only 1/100 of one percent that Gaines would have this genetic disorder. While we will spare the details of this disorder, there is no cure for it and the treatment is an eventual lung and heart transplant...not something we want to think about. We will get the results of this test next week. PLEASE pray that Gaines' test results are negative for this rare genetic disorder.
We all continued the meeting assuming that this test will come back negative. We talked about our distance from home, the fact that Brittany is leaving in three weeks, and all of the other abnormalities regarding our situation. Basically, Gaines will continue the current treatment of CPAP and some diuretics for the next three weeks. At the end of these three weeks we will have a better idea of how much longer Gaines will be in the hospital and can discuss our options. Our options being either staying at GWUH because the end of his stay is in sight or a transfer to a hospital back home in Alabama. At this time, we still do not know if our insurance company will even cover the cost of the transfer. We hope to know the answer to this question by next week.
Bottom line, we are going to stay the course of his current treatment for the next three weeks. Please pray that Gaines does not have the rare genetic disorder, that his lungs continue to grow and mature, and wisdom for Brittany and me as we continue to face very tough decisions.
Beau
A couple of days ago, the doctors asked if Brittany and I could meet them on Thursday to discuss Gaines' progress and the plan going forward. They wanted us to be there together...slight problem, who is going to watch Reed. We tossed around a few ideas and then decided to meet with the doctors during Reed's nap. We would simply put him in his stroller (asleep) and take him with us. Problem solved.
As Brittany mentioned in her previous post, things did not go according to plan. Basically the doctors could not meet with us during Reed's nap. We had no idea what to do. There was no way two NICU doctors were going to be so entertaining that he would sit there quietly during our meeting. Our best option was to let Brittany go to the meeting and for me to listen via cell phone.
Brittany and I were both a little frustrated with the situation. While we waited to meet the doctors she posted a blog about it. Within 1o minutes of her posting the blog I got an email from one of the few people we know in DC. She said she had just read our blog, her work was really slow and that she would meet us at the hospital and watch Reed while we met with the doctors. Unbelievable.
Sometimes God works so discreetly that it might be months or even years before you realize what happened. Other times, its like a slap in the face. This was definitely a slap in the face. God reminded us that with all the looming questions ahead us that He will provide for us, no matter how small or how big.
To some of you this story might not seem like that big of a deal. To us, it was such an obvious example of God working in our lives that we had to share the story.
Now on to the meeting. This morning the doctors tried switching Gaines from the CPAP to a nasal cannula. They did this for a couple of reasons. First, if he is to be transferred it would be much easier if he was on nasal cannula. If Gaines is on CPAP he would have to re-intubated and put him on the ventilator to be transferred. Second, it would be easier for Gaines to begin bottle feeding if he could be switched to nasal cannula during the bottle feedings. Long story short, he did not tolerate a nasal cannula at all. After only five minutes on the nasal cannula he had to be switched back to the CPAP.
The doctors then told us that Gaines' progress at this point would be satisfactory for a baby that was maybe only 1 pound at birth. His birth weight was over 3 pounds and therefore they consider his progress not normal. They were quick to remind us of all the positives he has had in the past eight weeks but then consulted us regarding future treatment. Due to his lung progress, they have sent some blood work to John Hopkins to be tested for a rare genetic disorder. They were quick to tell us that there is only 1/100 of one percent that Gaines would have this genetic disorder. While we will spare the details of this disorder, there is no cure for it and the treatment is an eventual lung and heart transplant...not something we want to think about. We will get the results of this test next week. PLEASE pray that Gaines' test results are negative for this rare genetic disorder.
We all continued the meeting assuming that this test will come back negative. We talked about our distance from home, the fact that Brittany is leaving in three weeks, and all of the other abnormalities regarding our situation. Basically, Gaines will continue the current treatment of CPAP and some diuretics for the next three weeks. At the end of these three weeks we will have a better idea of how much longer Gaines will be in the hospital and can discuss our options. Our options being either staying at GWUH because the end of his stay is in sight or a transfer to a hospital back home in Alabama. At this time, we still do not know if our insurance company will even cover the cost of the transfer. We hope to know the answer to this question by next week.
Bottom line, we are going to stay the course of his current treatment for the next three weeks. Please pray that Gaines does not have the rare genetic disorder, that his lungs continue to grow and mature, and wisdom for Brittany and me as we continue to face very tough decisions.
Beau
Not Much Right Now
All is well this morning. Gaines got to about 38% overnight but was at 34% when I left the hospital this morning. I plan to meet with the doctors early this afternoon and will report back.
Beau and I were hoping to go together while Reed was napping in his stroller but Reed decided this morning at 2 a.m. that he was ready to start the day. No crying...just ready to play. So, he finally crashed and now I'll talk to the doctor with Beau on speaker phone. Hopefully Reed will cooperate and watch a movie or something.
Oh, P.S...the air conditioner here is broken and it is hot. Awesome.
Stay tuned.
Love to all,
Brittany
Beau and I were hoping to go together while Reed was napping in his stroller but Reed decided this morning at 2 a.m. that he was ready to start the day. No crying...just ready to play. So, he finally crashed and now I'll talk to the doctor with Beau on speaker phone. Hopefully Reed will cooperate and watch a movie or something.
Oh, P.S...the air conditioner here is broken and it is hot. Awesome.
Stay tuned.
Love to all,
Brittany
Wednesday, June 17, 2009
Three Months
I've been here for three months today. I left home on March 17 thinking I was going on three night work trip. For some reason today that three night trip keeps popping in my head and kind of makes me feel like I'm on Gilligan's Island. I know that's ridiculous but they thought they were just going on a 3 hour tour when they got stranded so you can see where I got it.
Sorry, that was random.
Gaines is doing great today and I almost want to spank his little fanny. Worrying me like he did yesterday only to get down to 26% last night! Yep, he was at 30% when I visited this morning but last night he was between 26 and 31. Hopefully he'll keep doing well today. Just goes to show that these doctors know what they are talking about. He is still 5 lbs 1 oz.
I had my post partum check-up today and I kind of felt like they did a little mental exam on me. They didn't come right out and say, "We think you might be crazy," but I could tell they wanted to make sure I was sane. Not sane...I'm kidding about that but I did feel like they wanted to make sure I was handling everything ok.
Having a "normal" newborn is really hard and enough to drive you crazy so I think they just wanted to make sure I wasn't depressed or anything. I do appreciate them checking on me but really, I'm ok. Obviously I have my down days (read yesterday's post for proof) but overall I think I'm doing better this time around than I did with Reed. Pretty sure being able to sleep helps.
On my way out of the doctor's office I ran into my old favorite OB doctor from the hospital. It was so good to see her. I talked to her for a bit and she hugged me when I left. We have met so many people since we've been here and so many of them have been wonderful but some just really stick out in your mind. I can't put a finger on why they do, they just do.
I'll run for now. It's raining just hard enough here to keep you inside. I hear that the high is 99 back home today. Can't say that I miss that part of home too much. That and the mosquitoes. I take that back. I'd kiss a mosquito right now if it meant I was home. Maybe we'll all be there soon.
Love to all,
Brittany
Sorry, that was random.
Gaines is doing great today and I almost want to spank his little fanny. Worrying me like he did yesterday only to get down to 26% last night! Yep, he was at 30% when I visited this morning but last night he was between 26 and 31. Hopefully he'll keep doing well today. Just goes to show that these doctors know what they are talking about. He is still 5 lbs 1 oz.
I had my post partum check-up today and I kind of felt like they did a little mental exam on me. They didn't come right out and say, "We think you might be crazy," but I could tell they wanted to make sure I was sane. Not sane...I'm kidding about that but I did feel like they wanted to make sure I was handling everything ok.
Having a "normal" newborn is really hard and enough to drive you crazy so I think they just wanted to make sure I wasn't depressed or anything. I do appreciate them checking on me but really, I'm ok. Obviously I have my down days (read yesterday's post for proof) but overall I think I'm doing better this time around than I did with Reed. Pretty sure being able to sleep helps.
On my way out of the doctor's office I ran into my old favorite OB doctor from the hospital. It was so good to see her. I talked to her for a bit and she hugged me when I left. We have met so many people since we've been here and so many of them have been wonderful but some just really stick out in your mind. I can't put a finger on why they do, they just do.
I'll run for now. It's raining just hard enough here to keep you inside. I hear that the high is 99 back home today. Can't say that I miss that part of home too much. That and the mosquitoes. I take that back. I'd kiss a mosquito right now if it meant I was home. Maybe we'll all be there soon.
Love to all,
Brittany
Tuesday, June 16, 2009
Quick Update
When I visited Gaines today he was back around 33%...thank you God. He actually got up to 42% and the nurse had a doctor look at him. They gave him an extra dose of Lasix (ps...I've been misspelling it) and increased his dosage of the ampa-whatever. He had a big wet diaper and they were able to wean him back down. He was at 34% when I left so I feel better. Please continue to keep him in your prayers.
Love to all,
Brittany
Love to all,
Brittany
Long Sigh...
So today does not seem to be Gaines' best day. When I visited this morning Gaines' oxygen was up to 39% and of course I was devastated. Through the night he was between 33-35% but he went up this morning before I arrived. It kills me that he can make huge progress like he did last week and undo it all in the matter of a few hours. While I was there his nurse suctioned him (they do this with his cares about every 4 hours) and was able to clear out his nose so when I left he was back down to 37%. I hope that's all he needed and he'll keep coming back down.
The doctors think that part of his increased oxygen is because they reduced the amount of diuretic he's getting. They were causing his electrolytes to go crazy so they cut back. The doctor this morning told me that they were going to supplement his milk so that he could get more calories with less fluid. He feels that will help offset the reduced diuretic. I guess we'll see.
One of the two attending doctors leaves Friday for 4 weeks so he wants to meet with Beau, me and another doctor on Thursday to make sure we are all on the same page and I think to sort of figure out a game plan. I don't know that Gaines could be transferred or even if we'd want him to be (we just feel he's getting great care here) but we are waiting to hear back from our insurance company to see if they'd cover a medical transfer back home.
Until recently (and he may not be now) he hasn't been healthy enough to transfer. I'm afraid insurance isn't going to want to do this but these doctors think they might. They think a hospital back home would be less expensive than this one and insurance might be willing to pay on the front end to save on the back. Like I said, I don't know that its even what we'd want to do but we want to know if it is at least an option. I hope to know a lot more about what the doctors think long term on Thursday.
I got really discouraged this morning when I saw the increased oxygen. I felt the tears stinging in my eyes and tried to fight them back until I could get out of the NICU but I couldn't. They spilled over and I desperately tried to hide it from all the doctors (they were all near because they do rounds near Gaines bed) but they saw me. Gaines' main attending doctor came over to try and reassure me. I told him that I was just so discouraged because he seemed to be going in the right direction. He told me that he was going in the right direction and not to let one day of increased oxygen get me upset. He said it could be many things that just messed him up for a little while. I pray that he's right and that when I call back, he's back to what I consider his "normal" range. I'll keep you updated.
I just want to take a second and thank you all for joining Beau and me on this journey. Your prayers and kind words via this blog, email, facebook, cards etc keep us going. Especially on days like today when its hard to stay positive. Please keep Gaines and our family in your prayers. Specifically for Gaines lungs to mature and get better.
Love to all,
Brittany
The doctors think that part of his increased oxygen is because they reduced the amount of diuretic he's getting. They were causing his electrolytes to go crazy so they cut back. The doctor this morning told me that they were going to supplement his milk so that he could get more calories with less fluid. He feels that will help offset the reduced diuretic. I guess we'll see.
One of the two attending doctors leaves Friday for 4 weeks so he wants to meet with Beau, me and another doctor on Thursday to make sure we are all on the same page and I think to sort of figure out a game plan. I don't know that Gaines could be transferred or even if we'd want him to be (we just feel he's getting great care here) but we are waiting to hear back from our insurance company to see if they'd cover a medical transfer back home.
Until recently (and he may not be now) he hasn't been healthy enough to transfer. I'm afraid insurance isn't going to want to do this but these doctors think they might. They think a hospital back home would be less expensive than this one and insurance might be willing to pay on the front end to save on the back. Like I said, I don't know that its even what we'd want to do but we want to know if it is at least an option. I hope to know a lot more about what the doctors think long term on Thursday.
I got really discouraged this morning when I saw the increased oxygen. I felt the tears stinging in my eyes and tried to fight them back until I could get out of the NICU but I couldn't. They spilled over and I desperately tried to hide it from all the doctors (they were all near because they do rounds near Gaines bed) but they saw me. Gaines' main attending doctor came over to try and reassure me. I told him that I was just so discouraged because he seemed to be going in the right direction. He told me that he was going in the right direction and not to let one day of increased oxygen get me upset. He said it could be many things that just messed him up for a little while. I pray that he's right and that when I call back, he's back to what I consider his "normal" range. I'll keep you updated.
I just want to take a second and thank you all for joining Beau and me on this journey. Your prayers and kind words via this blog, email, facebook, cards etc keep us going. Especially on days like today when its hard to stay positive. Please keep Gaines and our family in your prayers. Specifically for Gaines lungs to mature and get better.
Love to all,
Brittany
Monday, June 15, 2009
Slow Day
Not much to report today. Gaines is still doing well and has been hanging around 30% oxygen all day. This morning he wasn't wrapped up in blankets as usual so I took some full length pictures. I'll try and get them up here tonight. I just got back from holding him and he was as sweet as ever. He even opened his eyes for me for a little while.
Reed on the other hand has had better days. He is in some sort of funk this afternoon. Probably hungry since he didn't eat much lunch.
Overall its been a good day. Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Reed on the other hand has had better days. He is in some sort of funk this afternoon. Probably hungry since he didn't eat much lunch.
Overall its been a good day. Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Sunday, June 14, 2009
I'm Famous
Today was a good day. A good friend of Brittany's came in town today around 2:00 in the afternoon. They were catching up with each other so I took Reed to church myself (the church we are attending starts at 5:00 PM). Rather than take the Metro, Reed and I decided to walk to church. It is about a 45 minute walk but the weather was great and we both enjoyed it. When I got to church, I dropped Reed off at the nursery and then headed up to the sanctuary.
It was weird sitting in church without Brittany. We have been together so much over the past three months. Just being away from her for a few hours felt very strange. It made me think about how life is going to be in four weeks if she has to go home with Reed. For some reason, I found myself sitting in church with hundreds of other people but I felt alone. I started to doubt whether or not I could handle this journey without Brittany and Reed.
As I left church, I again thought it would be nice to walk rather than take the Metro. The weather was beautiful and I was still thinking about Brittany and Reed leaving. I thought the walk would help me clear my mind. I had walked about a block and was standing on a street corner waiting to cross when someone tapped me on the shoulder. I turned around and a young couple was standing there (they were actually the same age as Brittany and I but I like to think of us as young). The girl asked me, "Are you Beau Daniel".
I figured I had probably left something in the church nursery and this person had tracked me down. However, she proceeded to tell me that she is a reader of our blog. She said she saw Reed and I and told her husband who we were. I think he said something to her like "Don't you dare go talk to him". Well, she did...and I'm glad she did. We talked for about five minutes and she told me that she prays for us everyday. I told her thank you for praying, we said our goodbyes, and I continued my walk back to our apartment. As I walked home I realized that Brittany and I are not alone in this journey and that I won't be alone if they leave.
It was during this encounter with a stranger on the street that I realized God will not leave us in this journey and he will not leave us alone. Many different people have been brought into our lives during this journey. Talking to the couple on the street made me realize there are many more people out there that God will continue to bring into our lives when Brittany or I struggle.
I'm not sure why I shared this...more than anything I just wanted to write it down. It was one of those eye opening experiences you occasionally have. One of those times when you look back and say, "There is no way that happened by circumstance". It was a God Thing and I didn't want to forget it, so I shared it.
When I got home, I told Brittany the story. I told her I was now famous, being recognized on the streets of DC. We ate dinner and then I went to see Gaines. I arrived just as his nurse was doing his cares. I got to see him without all of his "stuff" and helped weigh him. He weighed in at an even 5 pounds. He has gotten new supplements the past 48 hours so some of the weight could be fluids. Hopefully not, but he may lose a few ounces in the coming days. He maintained about 29% oxygen this afternoon and was on 29% when I left.
Thank you for praying.
Beau
It was weird sitting in church without Brittany. We have been together so much over the past three months. Just being away from her for a few hours felt very strange. It made me think about how life is going to be in four weeks if she has to go home with Reed. For some reason, I found myself sitting in church with hundreds of other people but I felt alone. I started to doubt whether or not I could handle this journey without Brittany and Reed.
As I left church, I again thought it would be nice to walk rather than take the Metro. The weather was beautiful and I was still thinking about Brittany and Reed leaving. I thought the walk would help me clear my mind. I had walked about a block and was standing on a street corner waiting to cross when someone tapped me on the shoulder. I turned around and a young couple was standing there (they were actually the same age as Brittany and I but I like to think of us as young). The girl asked me, "Are you Beau Daniel".
I figured I had probably left something in the church nursery and this person had tracked me down. However, she proceeded to tell me that she is a reader of our blog. She said she saw Reed and I and told her husband who we were. I think he said something to her like "Don't you dare go talk to him". Well, she did...and I'm glad she did. We talked for about five minutes and she told me that she prays for us everyday. I told her thank you for praying, we said our goodbyes, and I continued my walk back to our apartment. As I walked home I realized that Brittany and I are not alone in this journey and that I won't be alone if they leave.
It was during this encounter with a stranger on the street that I realized God will not leave us in this journey and he will not leave us alone. Many different people have been brought into our lives during this journey. Talking to the couple on the street made me realize there are many more people out there that God will continue to bring into our lives when Brittany or I struggle.
I'm not sure why I shared this...more than anything I just wanted to write it down. It was one of those eye opening experiences you occasionally have. One of those times when you look back and say, "There is no way that happened by circumstance". It was a God Thing and I didn't want to forget it, so I shared it.
When I got home, I told Brittany the story. I told her I was now famous, being recognized on the streets of DC. We ate dinner and then I went to see Gaines. I arrived just as his nurse was doing his cares. I got to see him without all of his "stuff" and helped weigh him. He weighed in at an even 5 pounds. He has gotten new supplements the past 48 hours so some of the weight could be fluids. Hopefully not, but he may lose a few ounces in the coming days. He maintained about 29% oxygen this afternoon and was on 29% when I left.
Thank you for praying.
Beau
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