First of all, a big sigh of relief. The test results for the rare genetic disorder came back from John Hopkins and they were negative. I don't think the doctors, Brittany or I really believed Gaines had the genetic disorder but it is still nice to cross that one off the list.
Throughout last night Gaines' oxygen requirements were between 25% and 26%. Due to his recent progress, the doctors decided to try him on nasal cannula (2 liters) this morning. He has been on it for about an hour and is doing well. What an unbelievable blessing this might be. You may remember that the doctors tried him on nasal cannula last week and he only lasted about 5 minutes.
On a different note, we experienced a "God Thing" yesterday. One week ago Brittany and I were discussing our finances and determined our "budget" for the remaining time that she and Reed would be here. Yesterday, we recieved a monetary gift from an organization that I am affiliated with. The monetary gift was the exact amount of our "budget". What an incredible blessing.
Brittany will post later tonight with an update on Gaines and the nasal canula experiment.
Please continue to pray for us.
Beau
Tuesday, June 30, 2009
Monday, June 29, 2009
Quick Update
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
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
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
Causing A Scene...On Accident
Gaines is doing well this morning. He was at 31% oxygen when I visited this morning but last night he held at 28% oxygen for several hours. I'd say that's improvement. While I was there this morning they put him at 27% and he was doing well with it. I don't expect him to stay there all day but if he could hold for an hour or two it would at least be a step in the right direction.
Right now I'm happy with 30 and below but I don't get concerned unless he's 33 or above. Its amazing how 3 days ago I was so excited over 33% and today it seems like not good enough. I just pray that he will keep slowly coming down. I've been waiting a long time to see the 20s again.
I'm afraid that I caused a little bit of a scene today at the hospital. Last week Gaines' main doctor told me that if I was ever there and didn't see his CPAP bubbling to let my nurse know. He explained that if it wasn't bubbling, he wasn't getting the pressure that the CPAP should provide. Basically CPAP with no bubbling is no different from a nasal cannula. Knowing all of this now I've been watching really closely for the bubbling lately and there have been many times that he has not been.
Now I know that it is extremely hard to keep the CPAP just right so that it creates a good seal against his nose and allows for the pressure in his lungs, but I just felt like lately it was almost rare that he was actually bubbling. Before I continue I want to be clear that Gaines' nurses are great and that I 100% understand how hard it is for them to keep it just right. Just the slightest tilt of his head can mess up his mask and there are also times where he just needs to rest and not be bothered. However, I have gotten to the point where I don't have the time to mess around anymore.
I feel like its time to really buckle down and make sure that we are doing everything possible to get him better. In my mind I see this giant digital clock that is counting down the weeks, days, hours, minutes, second and milliseconds until I have to leave so I'm sure I'm a little stressed and hyper-sensitive about this. However, I know that I (and Beau) am his #1 advocate and if I don't speak up, who will?
So...back to my story. One of the doctors came by Gaines bed while I was there and I explained my frustrations to her. She of course understood (doctors push the constant bubbling but aren't the ones that have to actually maintain it minute to minute) and told me that she'd take care of it. She talked to the charge nurse and then Gaines' nurse and a couple of others while I was there. I could tell our nurse took offense to being chastised and it turned into a big ordeal that ended with me crying and being consoled by yet another nurse. I didn't mean to stir up trouble, I just want whats best for Gaines.
Anyway, this doctor was going to talk to the two attendings about it and make sure that everyone was aware of how important it is for Gaines and any baby on CPAP to be bubbling all the time. I believe Gaines is a tougher case as he has gotten older and his able now to maneuver around and mess his mask up more often.
I just hope I haven't made the nurses mad at me. They've all been great this whole time. I think I made up with today's nurse but I'm afraid there is going to be a note in our chart over this. Oh well...I do think Gaines will be bubbling a lot more in the days to come.
In other news, one of my oldest friends from home should be here this afternoon to visit. She's in the area and wanted to stop by for a while so that should be fun.
I am cracking up right now listening to Beau get Reed in trouble. He normally takes naps and goes to bed great in this new big boy version of a bed that he's got going right now (an air mattress on the floor). For some reason today he's in there playing with whatever he can turn into a toy. Beau's been in there three times now and I just think its funny. I keep hearing..."Reed, get back in that bed. We aren't playing right now." The last time he came back out with a tupperware container that Reed came up with some how. He is so funny lately. I have to try so hard sometimes not to laugh when we have to get him in trouble.
I better run. This is way too long already.
Love to all,
Brittany
Right now I'm happy with 30 and below but I don't get concerned unless he's 33 or above. Its amazing how 3 days ago I was so excited over 33% and today it seems like not good enough. I just pray that he will keep slowly coming down. I've been waiting a long time to see the 20s again.
I'm afraid that I caused a little bit of a scene today at the hospital. Last week Gaines' main doctor told me that if I was ever there and didn't see his CPAP bubbling to let my nurse know. He explained that if it wasn't bubbling, he wasn't getting the pressure that the CPAP should provide. Basically CPAP with no bubbling is no different from a nasal cannula. Knowing all of this now I've been watching really closely for the bubbling lately and there have been many times that he has not been.
Now I know that it is extremely hard to keep the CPAP just right so that it creates a good seal against his nose and allows for the pressure in his lungs, but I just felt like lately it was almost rare that he was actually bubbling. Before I continue I want to be clear that Gaines' nurses are great and that I 100% understand how hard it is for them to keep it just right. Just the slightest tilt of his head can mess up his mask and there are also times where he just needs to rest and not be bothered. However, I have gotten to the point where I don't have the time to mess around anymore.
I feel like its time to really buckle down and make sure that we are doing everything possible to get him better. In my mind I see this giant digital clock that is counting down the weeks, days, hours, minutes, second and milliseconds until I have to leave so I'm sure I'm a little stressed and hyper-sensitive about this. However, I know that I (and Beau) am his #1 advocate and if I don't speak up, who will?
So...back to my story. One of the doctors came by Gaines bed while I was there and I explained my frustrations to her. She of course understood (doctors push the constant bubbling but aren't the ones that have to actually maintain it minute to minute) and told me that she'd take care of it. She talked to the charge nurse and then Gaines' nurse and a couple of others while I was there. I could tell our nurse took offense to being chastised and it turned into a big ordeal that ended with me crying and being consoled by yet another nurse. I didn't mean to stir up trouble, I just want whats best for Gaines.
Anyway, this doctor was going to talk to the two attendings about it and make sure that everyone was aware of how important it is for Gaines and any baby on CPAP to be bubbling all the time. I believe Gaines is a tougher case as he has gotten older and his able now to maneuver around and mess his mask up more often.
I just hope I haven't made the nurses mad at me. They've all been great this whole time. I think I made up with today's nurse but I'm afraid there is going to be a note in our chart over this. Oh well...I do think Gaines will be bubbling a lot more in the days to come.
In other news, one of my oldest friends from home should be here this afternoon to visit. She's in the area and wanted to stop by for a while so that should be fun.
I am cracking up right now listening to Beau get Reed in trouble. He normally takes naps and goes to bed great in this new big boy version of a bed that he's got going right now (an air mattress on the floor). For some reason today he's in there playing with whatever he can turn into a toy. Beau's been in there three times now and I just think its funny. I keep hearing..."Reed, get back in that bed. We aren't playing right now." The last time he came back out with a tupperware container that Reed came up with some how. He is so funny lately. I have to try so hard sometimes not to laugh when we have to get him in trouble.
I better run. This is way too long already.
Love to all,
Brittany
Saturday, June 13, 2009
The Day After My Birthday
I had such a great day yesterday. Beau did a wonderful job of making my birthday special even though we were away from all of our family and friends. We had a great time at the pool with Reed. I'm a lot more careful than I use to be but I'm a bit of a sun worshiper so I loved it. The weather was perfect. Our dinner was great as well. After dinner we walked to Ben & Jerry's in Georgetown for a little ice cream. All of this makes for a great day in my book anyway but little Gaines had a surprise of his own.
When I went to visit yesterday he was on 30% oxygen! I was praying as I walked in that he was still around 33% so when I saw 30 I almost fell out. All day yesterday and last night he was between 30-32% and when I left this morning's visit he was at 30 again. Such an awesome feeling. They've been telling us lately to watch him more week to week than day to day so Beau asked how he was last week at this time. Last week he was between 37-40% so you can see, he's had a great week.
The other big news is that they started letting him practice feeding from a bottle yesterday. He only gets 5 minutes twice a day to try. Both times yesterday he took 5 ccs. This is very little but at least the little guy is getting some practice. It's still tough from him with the CPAP but hopefully now when that comes off, he'll know what to do to eat.
Yesterday was probably the best day I've had since we've been here. Gaines made big progress, I got to spend a lot of time in the sun with two of my boys, good food all day long, great weather, lots of well wishes and I even got to use a brand new tube of toothpaste yesterday. I know that sounds random but to me its one of life's little pleasures. Everyone's got their little weird things...that's just one of mine. Beau is going to die when he reads that...I don't think I've ever told him about that.
A weird thing happened yesterday. We were walking and all of a sudden all of the street noise stopped and it was just quiet...for a whole minute or so. It was just so weird. DC is never quiet. There is always something going on. This is a great city but the noise and constant movement here drives me crazy. It is so loud around here and that little moment of quiet was so nice.
Everything is still great here today. Gaines is still doing well. His electrolytes are kind of out of whack from the diuretics so he's getting sodium chloride, ammonia chloride and potassium for that.
We plan to spend as much time at "home" today as we can. Yesterday was such a big day and we did tons of walking so we are enjoying just being lazy. Of course we'll still visit Gaines but that walk to this hospital is nothing to us now. Remember how hard it was for me at first? We've all come a long way since this all started ALMOST 3 MONTHS AGO! Hopefully Gaines will continue to make good progress in the coming weeks and we'll all be able to go home as a family.
Please keep us in your prayers.
Oh, and a very happy birthday wish to my sister Abby! We love you Abby! My mom had to leave my 3 year old birthday party to go to the hospital with her and my life has never been the same. Mostly for the better... :)
Love to all,
Brittany
When I went to visit yesterday he was on 30% oxygen! I was praying as I walked in that he was still around 33% so when I saw 30 I almost fell out. All day yesterday and last night he was between 30-32% and when I left this morning's visit he was at 30 again. Such an awesome feeling. They've been telling us lately to watch him more week to week than day to day so Beau asked how he was last week at this time. Last week he was between 37-40% so you can see, he's had a great week.
The other big news is that they started letting him practice feeding from a bottle yesterday. He only gets 5 minutes twice a day to try. Both times yesterday he took 5 ccs. This is very little but at least the little guy is getting some practice. It's still tough from him with the CPAP but hopefully now when that comes off, he'll know what to do to eat.
Yesterday was probably the best day I've had since we've been here. Gaines made big progress, I got to spend a lot of time in the sun with two of my boys, good food all day long, great weather, lots of well wishes and I even got to use a brand new tube of toothpaste yesterday. I know that sounds random but to me its one of life's little pleasures. Everyone's got their little weird things...that's just one of mine. Beau is going to die when he reads that...I don't think I've ever told him about that.
A weird thing happened yesterday. We were walking and all of a sudden all of the street noise stopped and it was just quiet...for a whole minute or so. It was just so weird. DC is never quiet. There is always something going on. This is a great city but the noise and constant movement here drives me crazy. It is so loud around here and that little moment of quiet was so nice.
Everything is still great here today. Gaines is still doing well. His electrolytes are kind of out of whack from the diuretics so he's getting sodium chloride, ammonia chloride and potassium for that.
We plan to spend as much time at "home" today as we can. Yesterday was such a big day and we did tons of walking so we are enjoying just being lazy. Of course we'll still visit Gaines but that walk to this hospital is nothing to us now. Remember how hard it was for me at first? We've all come a long way since this all started ALMOST 3 MONTHS AGO! Hopefully Gaines will continue to make good progress in the coming weeks and we'll all be able to go home as a family.
Please keep us in your prayers.
Oh, and a very happy birthday wish to my sister Abby! We love you Abby! My mom had to leave my 3 year old birthday party to go to the hospital with her and my life has never been the same. Mostly for the better... :)
Love to all,
Brittany
Friday, June 12, 2009
Happy Birthday Brittany!
Yes, today is Brittany's birthday. She turns 28 today! She loves to let me know that her birthdays don't bother her because she always knows that I am two years older than her. She is so sweet.
I am trying to make the day as special for her as I can. She got her annual birthday breakfast this morning of Pillsbury Cinnamon Rolls with Icing and a glass of milk. We are going to go to a pool today which is one of Brittany's favorite things to do. At the pool we are going to have burgers and fries for lunch. By the way, Reed calls the swimming pool "Big Bath". Then, later tonight I am taking her to a little Pizza Place here in DC (she is a sucker for pizza, lasagna, or pretty much anything Italian).
Reed and I did get her a small gift (I can't say what it is because she doesn't get it until lunch). Gaines also got her a card and it is waiting for her at his bedside in the NICU. I'm sure Brittany will enjoy all of this but hopefully Gaines will give her the best gift...progress.
He is doing well. His oxygen averaged 33% yesterday which is down about 5% from one week ago. Maybe he will make similar progress this next week.
Thank you for all of the prayers.
Beau
I am trying to make the day as special for her as I can. She got her annual birthday breakfast this morning of Pillsbury Cinnamon Rolls with Icing and a glass of milk. We are going to go to a pool today which is one of Brittany's favorite things to do. At the pool we are going to have burgers and fries for lunch. By the way, Reed calls the swimming pool "Big Bath". Then, later tonight I am taking her to a little Pizza Place here in DC (she is a sucker for pizza, lasagna, or pretty much anything Italian).
Reed and I did get her a small gift (I can't say what it is because she doesn't get it until lunch). Gaines also got her a card and it is waiting for her at his bedside in the NICU. I'm sure Brittany will enjoy all of this but hopefully Gaines will give her the best gift...progress.
He is doing well. His oxygen averaged 33% yesterday which is down about 5% from one week ago. Maybe he will make similar progress this next week.
Thank you for all of the prayers.
Beau
Thursday, June 11, 2009
Reed meet Gaines...Gaines meet Reed
Gaines will be seven weeks old tomorrow and he has never met his big brother Reed...until this morning. Until recently we did not feel that Gaines was healthy enough to meet Reed. After consulting with the doctors/nurses and because of Gaines' recent progress, we decided it was time for them to meet each other.
Brittany went into the NICU first and checked on Gaines. At one point last night his oxygen was at 31% but was as high as 36%. This morning he was requiring 34% oxygen. He did gain a little weight last night and is now up to 4 pounds 12 ounces. Once Brittany finished getting the "report", it was time for Reed and Gaines to meet.
Before Reed could go into the NICU, a nurse had to take his temperature. After it was determined that Reed did not have a fever, it was time to take him in the NICU. At first, Reed was pretty much speechless as I walked into the NICU holding him. I guess it is a scary place for a 20-month old. When we got to Gaines' bedside, Brittany was holding him. Reed was excited to see his "mama" and did say "baby" when he looked at Gaines. However, he was most interested in Gaines' CPAP machine and the bubbles it produces. Reed must have said "bubbles" at least ten times during his three minute visit to the NICU.
Brittany went into the NICU first and checked on Gaines. At one point last night his oxygen was at 31% but was as high as 36%. This morning he was requiring 34% oxygen. He did gain a little weight last night and is now up to 4 pounds 12 ounces. Once Brittany finished getting the "report", it was time for Reed and Gaines to meet.
Before Reed could go into the NICU, a nurse had to take his temperature. After it was determined that Reed did not have a fever, it was time to take him in the NICU. At first, Reed was pretty much speechless as I walked into the NICU holding him. I guess it is a scary place for a 20-month old. When we got to Gaines' bedside, Brittany was holding him. Reed was excited to see his "mama" and did say "baby" when he looked at Gaines. However, he was most interested in Gaines' CPAP machine and the bubbles it produces. Reed must have said "bubbles" at least ten times during his three minute visit to the NICU.
I'm not sure what Reed or Gaines thought about their introduction this morning. Maybe on some level they knew they were brothers. I hope so.
Here are our first family pictures. Its not our entire family, but Jack is in Andalusia. We will get the entire family in a picture when we get back to Montgomery...someday.
Wednesday, June 10, 2009
Brudah Gene
For the longest time Reed didn't acknowledge that he had a brother. I'm still not totally sure that he gets it but now he will say "brudah" when he sees a picture of Gaines. When you ask what his name is he tries to say Gaines but it comes out "Gene". Now Gene is a perfectly nice name but I really hope that it doesn't stick...I'm kind of partial to Gaines.
Gaines is actually doing really great today. Last night he got down to 33% oxygen and has stayed there all day. They tried to bump him down to 32% today but he didn't go for that. It's amazing that one percent makes that big of a difference. He didn't do so great on his weight last night though. He lost 110 grams. That's a lot for such a little guy...about 3 ounces. The doctors don't seem too concerned. They feel like its because of his new diuretic.
He is now getting another diuretic (in addition to the lasiks) called aldacta-something. This is at the recommendation of the cardiologist. That started yesterday and his oxygen came down so it seems to be working. I pray that he's able to get to 32% soon.
I want to grab on to this little bit of progress and hope that its the beginning of some big progress but I'm so afraid to. I really think he'll probably hold on to this for a few days and then maybe come down a little more. I guess only time will tell.
Everything else is still going well. I got to hold Gaines this afternoon. I've figured out that if I go around 4:00, he's awake and pretty alert. Oh, he seems to be doing well on his four hour schedule. His nurse last night said that he was an angel. I'd say that's a lot better than feisty.
I need to run. Reed is asking for his turn at the computer. :)
Love to all,
Brittany
Gaines is actually doing really great today. Last night he got down to 33% oxygen and has stayed there all day. They tried to bump him down to 32% today but he didn't go for that. It's amazing that one percent makes that big of a difference. He didn't do so great on his weight last night though. He lost 110 grams. That's a lot for such a little guy...about 3 ounces. The doctors don't seem too concerned. They feel like its because of his new diuretic.
He is now getting another diuretic (in addition to the lasiks) called aldacta-something. This is at the recommendation of the cardiologist. That started yesterday and his oxygen came down so it seems to be working. I pray that he's able to get to 32% soon.
I want to grab on to this little bit of progress and hope that its the beginning of some big progress but I'm so afraid to. I really think he'll probably hold on to this for a few days and then maybe come down a little more. I guess only time will tell.
Everything else is still going well. I got to hold Gaines this afternoon. I've figured out that if I go around 4:00, he's awake and pretty alert. Oh, he seems to be doing well on his four hour schedule. His nurse last night said that he was an angel. I'd say that's a lot better than feisty.
I need to run. Reed is asking for his turn at the computer. :)
Love to all,
Brittany
Tuesday, June 9, 2009
Pictures
Brittany visited Gaines this afternoon and he was awake and very active. She took some great pictures.
Tuesday Morning
A quick update on Gaines.
The doctors have decided to change Gaines' feeding schedule. He used to get 40 cc's every 3 hours. They have now decided to give him 55 cc's every 4 hours (30 cc's is an ounce). He is still getting the same amount of calories per day, its just that he is only getting fed 6 times per day rather than 8. Each time he is fed he also gets his "cares" done (temperature, suctioning, diaper change, etc.) His "cares" can be really stressful and seem to irritate him so that is why the doctors changed the schedule. The new schedule means he will be "messed with" 2 fewer times per day, 14 fewer times per week, etc.
He continues to require between 35-40 % oxygen and last night he was up to 4 pounds 14.4 ounces. With any luck, he will reach the 5 pound mark tonight.
Thank you all for your prayers.
Beau
The doctors have decided to change Gaines' feeding schedule. He used to get 40 cc's every 3 hours. They have now decided to give him 55 cc's every 4 hours (30 cc's is an ounce). He is still getting the same amount of calories per day, its just that he is only getting fed 6 times per day rather than 8. Each time he is fed he also gets his "cares" done (temperature, suctioning, diaper change, etc.) His "cares" can be really stressful and seem to irritate him so that is why the doctors changed the schedule. The new schedule means he will be "messed with" 2 fewer times per day, 14 fewer times per week, etc.
He continues to require between 35-40 % oxygen and last night he was up to 4 pounds 14.4 ounces. With any luck, he will reach the 5 pound mark tonight.
Thank you all for your prayers.
Beau
Monday, June 8, 2009
One Foot In Front Of The Other
I feel like there is a song with those words in it but I'm having trouble placing the tune in my head. Anyway, I feel like that's what we keep doing here. The last twelve weeks we've been on this long, hard yet sometimes sweet journey. People ask me all the time how we are doing this or tell me that we are so strong to handle this like we are. We really aren't. We just keep putting one foot in front of the other. We deal with what we have to deal with and move on. That's all we can do. It's not always easy. I kind of think of it like sink or swim...what's our other option?
Sorry...I just thought about that today when I was walking to the hospital for the second time. Let me warn you now...I'm feeling particularly wordy today and I'm home alone at the moment so this could get long.
This morning when I left the hospital one of the attending doctors caught me and wanted to talk to me about "future plans". I had no idea what that meant so I was a little anxious when I went to talk to him this afternoon. Basically it was just a recap of what we already knew but I'll spell it out for everyone out there wanting to know why we don't just transfer him home.
First a little bittersweet news. I haven't put this out there yet because I've been a little afraid of the reaction that I'd get. I only ask that everyone be supportive of it as it was a hard decision for us to make. After much thought and prayer, Beau and I have decided that Reed and I will go home on July 11 so that I can go back to work.
My company has been extremely supportive of me during this time but they do have guidelines that they have to follow. My FMLA (12 weeks of leave) will be up this Thursday. According to my company policy, my supervisor can (and did) extend my unpaid leave for 30 days but after that, if I didn't return to work, I'd be terminated. I expected this so it didn't come as any great shock to me and I feel that it is very fair. I am very fortunate to have a job I love and will want to have for a long time so looking long term, we feel this is the best thing for us to do. This is just one of many reasons we chose this option over me just staying home with my boys until Gaines was ready to go to daycare.
So, back to my talk with the doctor. Keep in mind that all if this is just as I understand it and shouldn't be taken as the gospel.
This particular doctor had been out for the last 10 days and was expecting Gaines' oxygen to be around 25% when he returned. We all know that its not. He explained that Gaines is just going to take more time than he had hoped. Gaines has three strikes against his lungs and they all account for why his lungs are taking so much longer to develop. First, the are just premature, second they are more immature because of his lack of fluid and third, his VSDs are putting more pressure on them. The bottom line is that it is just going to take some time for them to get better.
The doctor feels like in about two weeks we'll be able to see how Gaines is trending and we'll get a better picture of a possible timeline. All of the doctors here are well aware of our situation and of our plan for me to go home in July. The four possible scenarios are below:
1. Gaines is breathing and eating on his own by July 11 and we will be able to travel home as a family and get back to our "real life". I asked what the chances of this were and was told about 50%. Honestly I was expecting maybe 10%. This is the scenario that I ask everyone to please pray for. While we know that me going home is in our best interest long term, it will be heartbreaking for me to leave my baby here (even if Beau's with him). I'm not focusing on it until I have to but I'm pretty sure it will be the hardest part of this whole thing.
2. Gaines is breathing on his own but not grasping the eating concept and is eligble for transfer to a step down facility back in Alabama. He'd stay at this facility until he was able to eat on his own.
3. Gaines is not breathing or eating on his own and is eligible for transfer back to Alabama to another NICU until he is ready to go home.
4. Gaines stays put where he is until he's completely ready to go home. Right now this looks like what will happen if he's not ready to go home when I leave. Just because he is eligible for transfer doesn't mean our insurance will pay for it and this could cost about $15-$20,000. Also, while a transfer could be done without any problems for Gaines, you cannot completely rule problems out. So, I feel like it would be selfish of me to transfer him home (if it even becomes a possibility) knowing that there is a risk of something happening to him. Plus, we truly feel like GWUH is the best place for Gaines to be.
The good news is, we've still got about 5 weeks for him to get better. I pray that he does. I know that we are on God's timeline here but I figure it can't hurt to ask.
Next topic. I just wanted to let you all know about Until Kara. This is a store that sells organic baby items and the owner was nice enough to send Gaines a couple of things last week. Now, I have never been really "green" or into buying organic, etc. but the things she sent were so soft (and very baby-stylish) that I thought I'd let you all know about them. I just like to pass along a good thing when I come across one. This is their website if you are interested. http://www.untilkara.com/index.html
Hmm...what else? Gaines is up to 4 lbs 13 oz but some of this is due to the blood he got yesterday. His oxygen is hanging around 35%. Actually while I was there he got down to 32% and was handling it very well. Before I left he dropped his sats and had to be bumped back up to 35% but maybe this afternoon he'll get back down.
I guess that's really about it for today. Beau and Reed went to the park during my hospital visit and should be home soon.
Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Sorry...I just thought about that today when I was walking to the hospital for the second time. Let me warn you now...I'm feeling particularly wordy today and I'm home alone at the moment so this could get long.
This morning when I left the hospital one of the attending doctors caught me and wanted to talk to me about "future plans". I had no idea what that meant so I was a little anxious when I went to talk to him this afternoon. Basically it was just a recap of what we already knew but I'll spell it out for everyone out there wanting to know why we don't just transfer him home.
First a little bittersweet news. I haven't put this out there yet because I've been a little afraid of the reaction that I'd get. I only ask that everyone be supportive of it as it was a hard decision for us to make. After much thought and prayer, Beau and I have decided that Reed and I will go home on July 11 so that I can go back to work.
My company has been extremely supportive of me during this time but they do have guidelines that they have to follow. My FMLA (12 weeks of leave) will be up this Thursday. According to my company policy, my supervisor can (and did) extend my unpaid leave for 30 days but after that, if I didn't return to work, I'd be terminated. I expected this so it didn't come as any great shock to me and I feel that it is very fair. I am very fortunate to have a job I love and will want to have for a long time so looking long term, we feel this is the best thing for us to do. This is just one of many reasons we chose this option over me just staying home with my boys until Gaines was ready to go to daycare.
So, back to my talk with the doctor. Keep in mind that all if this is just as I understand it and shouldn't be taken as the gospel.
This particular doctor had been out for the last 10 days and was expecting Gaines' oxygen to be around 25% when he returned. We all know that its not. He explained that Gaines is just going to take more time than he had hoped. Gaines has three strikes against his lungs and they all account for why his lungs are taking so much longer to develop. First, the are just premature, second they are more immature because of his lack of fluid and third, his VSDs are putting more pressure on them. The bottom line is that it is just going to take some time for them to get better.
The doctor feels like in about two weeks we'll be able to see how Gaines is trending and we'll get a better picture of a possible timeline. All of the doctors here are well aware of our situation and of our plan for me to go home in July. The four possible scenarios are below:
1. Gaines is breathing and eating on his own by July 11 and we will be able to travel home as a family and get back to our "real life". I asked what the chances of this were and was told about 50%. Honestly I was expecting maybe 10%. This is the scenario that I ask everyone to please pray for. While we know that me going home is in our best interest long term, it will be heartbreaking for me to leave my baby here (even if Beau's with him). I'm not focusing on it until I have to but I'm pretty sure it will be the hardest part of this whole thing.
2. Gaines is breathing on his own but not grasping the eating concept and is eligble for transfer to a step down facility back in Alabama. He'd stay at this facility until he was able to eat on his own.
3. Gaines is not breathing or eating on his own and is eligible for transfer back to Alabama to another NICU until he is ready to go home.
4. Gaines stays put where he is until he's completely ready to go home. Right now this looks like what will happen if he's not ready to go home when I leave. Just because he is eligible for transfer doesn't mean our insurance will pay for it and this could cost about $15-$20,000. Also, while a transfer could be done without any problems for Gaines, you cannot completely rule problems out. So, I feel like it would be selfish of me to transfer him home (if it even becomes a possibility) knowing that there is a risk of something happening to him. Plus, we truly feel like GWUH is the best place for Gaines to be.
The good news is, we've still got about 5 weeks for him to get better. I pray that he does. I know that we are on God's timeline here but I figure it can't hurt to ask.
Next topic. I just wanted to let you all know about Until Kara. This is a store that sells organic baby items and the owner was nice enough to send Gaines a couple of things last week. Now, I have never been really "green" or into buying organic, etc. but the things she sent were so soft (and very baby-stylish) that I thought I'd let you all know about them. I just like to pass along a good thing when I come across one. This is their website if you are interested. http://www.untilkara.com/index.html
Hmm...what else? Gaines is up to 4 lbs 13 oz but some of this is due to the blood he got yesterday. His oxygen is hanging around 35%. Actually while I was there he got down to 32% and was handling it very well. Before I left he dropped his sats and had to be bumped back up to 35% but maybe this afternoon he'll get back down.
I guess that's really about it for today. Beau and Reed went to the park during my hospital visit and should be home soon.
Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Sunday, June 7, 2009
What a Day
Our day started out with Brittany visiting the hospital this morning while Reed and I went to Trader Joe's (grocery store). Rather than putting Reed in his stroller, I let him walk beside me (holding my hand of course). He thought he was so big getting to walk to Trader Joe's. The only time he let go of my hand was so he could stop and smell some flowers. He doesn't really smell them, he just sort of bends over and puts his face near the flower. One of Brittany's favorite things to do is to smell flowers. I guess the old saying is true...monkey see, monkey do.
Shortly after returning from Trader Joe's, Reed took a nap. Surprisingly, he only slept for about an hour. So after a quick lunch, off to the pool we went...or as Reed calls it, the "big bath". He loved it and below are a few pictures of him swimming. After swimming, we quickly changed clothes, checked on Gaines and off to church we went. After church, we had hamburgers and real sweet tea for dinner. After dinner it was back to the hospital to see Gaines and then back to our hotel/apartment to put Reed to bed. He fell asleep immediately.
Throughout this busy day, Gaines oxygen requirements were about 37%. He did get another blood transfusion today and because of the new blood the doctors hope his oxygen requirements to drop by 5%. He is now 4 pounds 11.2 ounces. Please keep praying for him, he has come so far.
Beau
About The Same
Everything here is still about the same. Gaines' oxygen got up to 41% last night but he was around 37-38% when I got there this morning so it seems to be coming back down.
We've got a busy afternoon planned so I'll try and update later tonight. Although there doesn't seem to be much to report lately. I'm going to take that as a good thing.
Love to all,
Brittany
We've got a busy afternoon planned so I'll try and update later tonight. Although there doesn't seem to be much to report lately. I'm going to take that as a good thing.
Love to all,
Brittany
Saturday, June 6, 2009
Exhausted
Gaines has done well all day today. His oxygen has been between 35-38% all day and he's up to 4 lbs 11 oz. He even cooperated today and let me hold him for a whole hour. He really is such a sweet little thing. His nurse tonight hasn't taken care of him before, but she told Beau that she heard he was feisty. I really have no idea where he (or Reed for that matter) gets it from. :) I just think its funny that he's only 6 weeks old and already has a reputation for being feisty.
We found out earlier this week that Gaines' oxygen requirement isn't really going to come down until his VSDs in his heart close up. This is the reason for his oxygen remaining about the same for the last few days. We don't really expect it to come down for a while and we are just thankful that it hasn't gone up again. It could take several weeks for the VSDs to close so please pray for those specifically.
The silver lining to this is that we now have a little more realistic time frame on his recovery and its allowed me to relax a little about the oxygen...at least for a little while. I'm sure I'll start worrying about it again at some point .
We are so tired tonight as we have done a LOT of walking today. We did get our anniversary dinner out tonight and sweet Reed cooperated. Actually, we had a foursome as a certain stuffed monkey named Monk joined us. He cooperated as well. We even stopped by Ben and Jerry's on our way home for dessert. All in all we've had a good day and I am looking forward to a good night's sleep.
Please continue to keep our family in your prayers. Please specifically pray for Gaines heart to heal and the VSDs to close so his oxygen requirement can come down.
Love to all,
Brittany
We found out earlier this week that Gaines' oxygen requirement isn't really going to come down until his VSDs in his heart close up. This is the reason for his oxygen remaining about the same for the last few days. We don't really expect it to come down for a while and we are just thankful that it hasn't gone up again. It could take several weeks for the VSDs to close so please pray for those specifically.
The silver lining to this is that we now have a little more realistic time frame on his recovery and its allowed me to relax a little about the oxygen...at least for a little while. I'm sure I'll start worrying about it again at some point .
We are so tired tonight as we have done a LOT of walking today. We did get our anniversary dinner out tonight and sweet Reed cooperated. Actually, we had a foursome as a certain stuffed monkey named Monk joined us. He cooperated as well. We even stopped by Ben and Jerry's on our way home for dessert. All in all we've had a good day and I am looking forward to a good night's sleep.
Please continue to keep our family in your prayers. Please specifically pray for Gaines heart to heal and the VSDs to close so his oxygen requirement can come down.
Love to all,
Brittany
Saturday Morning
All is well this morning. Gaines' oxygen was at 36% at this morning's visit and he was doing really well with it. He is also up to 4 lbs 11 oz this morning. I think I forgot to mention this but we found out that he is 18 inches long now.
I'll post more later. Have a great weekend!
Love to all,
Brittany
I'll post more later. Have a great weekend!
Love to all,
Brittany
Friday, June 5, 2009
Change Of Plans
First of all, how cute is that picture of Gaines? Can't you tell how cute he'll be when he gets that CPAP off of his face?
We had a slight change of plans due to the nasty weather today. The weather here is never severe or anything its just nasty...wet, drizzly, cold. It probably wouldn't be so bad if we didn't walk everywhere we go but I don't think a car here would be worth it. Anyway, we have rescheduled our dinner for tomorrow night when the weather will be nice and we can have a pleasant walk. Tonight we went to Target. Romantic...I know.
By the way, I paid Beau to say all of those nice things about me. At the risk of cheesing everyone out, I'm really the lucky one. Seriously. I have such a great husband. Much more than I deserve. I wouldn't be able to do this or many of the things I do without him. He supports me 100% and is an awesome father. I only hope my two boys turn out like him.
Moving on...
Beau is visiting Gaines now and Reed is in bed so I thought I'd update. I'm not sure how Gaines is right this minute but this afternoon he was doing well. His oxygen was at 37% and he was doing well. I didn't hold him today because right after I held him yesterday is when he started needing more oxygen.
Actually...Beau just called. Gaines was at 36% when he got there and he got to hold him while his nurse changed his bedding etc. It's times like that when we don't feel so bad holding him...when they have to mess with him anyway. That's why we generally try and schedule our visits around his cares. We get to spend more time with him.
Tomorrow's plan is to take Reed swimming! It should be super fun. He loves the water. All year I've been looking forward to taking him swimming this summer. He was just really starting to enjoy it by the end of last summer.
OH! I keep forgetting...Gaines had another head ultrasound this week and it came back clear. His brain bleed has cleared up.
Thank you to everyone out there that has kept Gaines and our family in your prayers. Please keep them up!
Love to all,
Brittany
We had a slight change of plans due to the nasty weather today. The weather here is never severe or anything its just nasty...wet, drizzly, cold. It probably wouldn't be so bad if we didn't walk everywhere we go but I don't think a car here would be worth it. Anyway, we have rescheduled our dinner for tomorrow night when the weather will be nice and we can have a pleasant walk. Tonight we went to Target. Romantic...I know.
By the way, I paid Beau to say all of those nice things about me. At the risk of cheesing everyone out, I'm really the lucky one. Seriously. I have such a great husband. Much more than I deserve. I wouldn't be able to do this or many of the things I do without him. He supports me 100% and is an awesome father. I only hope my two boys turn out like him.
Moving on...
Beau is visiting Gaines now and Reed is in bed so I thought I'd update. I'm not sure how Gaines is right this minute but this afternoon he was doing well. His oxygen was at 37% and he was doing well. I didn't hold him today because right after I held him yesterday is when he started needing more oxygen.
Actually...Beau just called. Gaines was at 36% when he got there and he got to hold him while his nurse changed his bedding etc. It's times like that when we don't feel so bad holding him...when they have to mess with him anyway. That's why we generally try and schedule our visits around his cares. We get to spend more time with him.
Tomorrow's plan is to take Reed swimming! It should be super fun. He loves the water. All year I've been looking forward to taking him swimming this summer. He was just really starting to enjoy it by the end of last summer.
OH! I keep forgetting...Gaines had another head ultrasound this week and it came back clear. His brain bleed has cleared up.
Thank you to everyone out there that has kept Gaines and our family in your prayers. Please keep them up!
Love to all,
Brittany
Five Years
Five Years ago today Brittany and I got married. I have been telling her that she can tell her friends that I took her to DC for our five year anniversary (she didn't think that was funny). We do have reservations tonight (for three...Reed) at a little Italian restaurant in Georgetown. A couple here in DC did offer to keep Reed but it will be easier to take him to dinner with us. Plus, it just seems kind of appropriate to celebrate this milestone as a family.
Before I get to Gaines, I would like to let everyone know how incredibly lucky I am to have Brittany as my wife. If you have been following our journey, you probably know what a special person she is. She is an incredible wife and an amazing mother. Reed, Gaines and I are blessed to have her in our lives. I look forward to celebrating ten, fifteen, twenty, thirty and fifty years together.
Last night, I went to visit Gaines around 7:30. When I arrived, his oxygen requirement was at 49%. My heart sunk a little. He had been doing so well for the last two days staying between 35-40%. I talked to his nurse and was told that around 4:00 yesterday afternoon he slowly started to require more oxygen. I stayed at the hospital for his "cares" and left at 9:00. When I left he was still at 49-50%. I called this morning and he was at 42%. Shortly after I left last night his oxygen started to come down and he stayed between 38-40% most of the night. Hopefully, last night was just a fluke and he will get back on track today.
Here is a picture taken yesterday of Gaines with his eyes open.
Before I get to Gaines, I would like to let everyone know how incredibly lucky I am to have Brittany as my wife. If you have been following our journey, you probably know what a special person she is. She is an incredible wife and an amazing mother. Reed, Gaines and I are blessed to have her in our lives. I look forward to celebrating ten, fifteen, twenty, thirty and fifty years together.
Last night, I went to visit Gaines around 7:30. When I arrived, his oxygen requirement was at 49%. My heart sunk a little. He had been doing so well for the last two days staying between 35-40%. I talked to his nurse and was told that around 4:00 yesterday afternoon he slowly started to require more oxygen. I stayed at the hospital for his "cares" and left at 9:00. When I left he was still at 49-50%. I called this morning and he was at 42%. Shortly after I left last night his oxygen started to come down and he stayed between 38-40% most of the night. Hopefully, last night was just a fluke and he will get back on track today.
Here is a picture taken yesterday of Gaines with his eyes open.
Thursday, June 4, 2009
Thursday's Report
Gaines seems to be having a good day today. At 9:00 this morning he had gotten down to 34% oxygen. He was even on his back which is a big deal as he usually does better on his stomach. I'm hopeful that today will be a day of a little progress.
He had just gotten settled when I got to the hospital this morning so I didn't want to hold him and bother him but I'm going to try and time my next visit with his "cares". They do his cares every three hours. Basically this is just a diaper change, temperature check, suctioning etc. It's just easier and better for him if we try and hold him at those times. That way he gets plenty of rest.
The NICU sent 3 babies home yesterday. From what I gather that was a pretty big day for them. One of the babies was a 24 weeker that had been there for 111 days. You could really tell that the nurses were genuinely excited for the family. They really do love these little babies. It really makes me appreciate where we are with Gaines. We very easily could have had a similar situation. The baby's parents looked so excited to finally be able to take their little girl home. I can't wait for that day for us.
Please continue to keep Gaines and our family in your prayers. Please pray for steady progress and peace for Beau and I as we continue to wait on our little boy.
Also, please keep the Smith family in your prayers. Their little boy is having heart surgery today. I know how hard it is to turn your baby over to doctors and not be able to help them at all. Plus they are away from home as well. Pray that God comforts them and for Dylon's surgery to be successful. http://dylonhoustonlaetonreid.blogspot.com/
Love to all,
Brittany
He had just gotten settled when I got to the hospital this morning so I didn't want to hold him and bother him but I'm going to try and time my next visit with his "cares". They do his cares every three hours. Basically this is just a diaper change, temperature check, suctioning etc. It's just easier and better for him if we try and hold him at those times. That way he gets plenty of rest.
The NICU sent 3 babies home yesterday. From what I gather that was a pretty big day for them. One of the babies was a 24 weeker that had been there for 111 days. You could really tell that the nurses were genuinely excited for the family. They really do love these little babies. It really makes me appreciate where we are with Gaines. We very easily could have had a similar situation. The baby's parents looked so excited to finally be able to take their little girl home. I can't wait for that day for us.
Please continue to keep Gaines and our family in your prayers. Please pray for steady progress and peace for Beau and I as we continue to wait on our little boy.
Also, please keep the Smith family in your prayers. Their little boy is having heart surgery today. I know how hard it is to turn your baby over to doctors and not be able to help them at all. Plus they are away from home as well. Pray that God comforts them and for Dylon's surgery to be successful. http://dylonhoustonlaetonreid.blogspot.com/
Love to all,
Brittany
Wednesday, June 3, 2009
Longer Post
Sorry for such a quick post before. Reed was sleeping and sometimes I have to take advantage of that time to get things done and this blog can't always be at the top of that list. Luckily he's still sleeping so I should have a few minutes. I say luckily because they are doing construction on the fitness center here (which is right above our little apartment). Some how they always know when the second half of Reed's nap is and they start hammering away on something. I just hold my breath and pray he sleeps through it. Reed without a full nap can be a handful.
Anyway, Gaines is continuing to do well today. Like I said, his oxygen is hanging out between 35-40%. Of course I'd like that to be lower but after talking to the doctor this morning I just don't see that happening right this minute. She believes that Gaines' increased oxygen is due to the VSDs in his heart. She thinks those holes will have to start healing before the oxygen begins to come down. Some of it is also due to his prematurity. She also thinks that he will be on the lasiks or some other diuretic for the foreseeable future. He could even go home on them. She told me Monday that it was her goal to get us out of here this month...mine too.
Gaines' weight is up again. He's now 4 lbs 10.2 oz. Little piggy. He had to get a quick bath this morning while I was there and the nurse actually put him in the water (instead of a sponge bath)for a minute. He really seemed to like it. I think we have another bath lover on our hands. Also, yesterday afternoon he had his eyes open and was really looking around. He was SO cute. I've always thought he was beautiful but he just looked really cute yesterday with his eyes open. I guess because they aren't open much. Because of his hat pushing down and his CPAP pushing up (and him just being a preemie) it's hard for him to open his eyes much. Whenever we get to see them its a real treat.
My grandparents were here last night and today so Gaines got to meet his great-grandparents on my dad's side. He actually has a great-great grandmother on that side that we hope he gets to meet soon. My grandparents and their friends were traveling through on vacation and stopped to see us for a few days. It was so good to see them. They (as have the rest of our family members) have been awesome through this whole thing.
I better run for now...I hear Reed rustling around. Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Anyway, Gaines is continuing to do well today. Like I said, his oxygen is hanging out between 35-40%. Of course I'd like that to be lower but after talking to the doctor this morning I just don't see that happening right this minute. She believes that Gaines' increased oxygen is due to the VSDs in his heart. She thinks those holes will have to start healing before the oxygen begins to come down. Some of it is also due to his prematurity. She also thinks that he will be on the lasiks or some other diuretic for the foreseeable future. He could even go home on them. She told me Monday that it was her goal to get us out of here this month...mine too.
Gaines' weight is up again. He's now 4 lbs 10.2 oz. Little piggy. He had to get a quick bath this morning while I was there and the nurse actually put him in the water (instead of a sponge bath)for a minute. He really seemed to like it. I think we have another bath lover on our hands. Also, yesterday afternoon he had his eyes open and was really looking around. He was SO cute. I've always thought he was beautiful but he just looked really cute yesterday with his eyes open. I guess because they aren't open much. Because of his hat pushing down and his CPAP pushing up (and him just being a preemie) it's hard for him to open his eyes much. Whenever we get to see them its a real treat.
My grandparents were here last night and today so Gaines got to meet his great-grandparents on my dad's side. He actually has a great-great grandmother on that side that we hope he gets to meet soon. My grandparents and their friends were traveling through on vacation and stopped to see us for a few days. It was so good to see them. They (as have the rest of our family members) have been awesome through this whole thing.
I better run for now...I hear Reed rustling around. Please continue to keep Gaines and our family in your prayers.
Love to all,
Brittany
Not Much To Say
All is still well with Gaines. His oxygen is between 35-40%. I'll post more later this afternoon.
Brittany
Brittany
Tuesday, June 2, 2009
Tuesday Night
We had visitors today. Brittany's Grandparents stopped in DC on their way to Pennsylvania for a vacation. Gaines was able to meet his Great-Grandparents. When we visited him tonight his oxygen was 38-39% but he did get down to 35% today. Please pray his oxygen requirements continue to head in the right direction.
Here are a few new photos.
Quick Update
Brittany went to visit Gaines this morning and his oxygen was 38-39%. He also gained weight and is now 4 pounds 9.5 ounces. We will post more later.
Beau
Beau
Monday, June 1, 2009
June
So its June...and...we...are...still...here. This all started in March. Big sigh.
The changing of the month means that our doctors get changed around again. The bad news is that we lose a great doctor that's been seeing Gaines from the start (although he'll be around some because he has a research project going on at GWUH). The good news is that the fellow that was around for Gaines' rough few days is back. We really love both of the fellows and the attendings that have been taking care of Gaines. I talked to the new fellow this morning and she said that she was going to try and get him out of here this month. She followed it up with what we've known all along..."its up to him though". I know that she meant Gaines but I think the "him" that's its up to is the one with the capital H.
This month also brings several things that I had hoped to celebrate at home. Beau and I will have been married for five years on Friday, my birthday is the next Friday and Fathers Day is the next weekend. I'm afraid we'll have to celebrate each of these things in D.C. I'm sure Beau will try and get away with saying he took me to D.C. for our anniversary.
I'd gotten kind of down the last couple of days because I'm so ready to get my family back home. I'd cry and ask Beau when is this going to end and how are we going to handle it once we did get back home. I'd want to know how much more do I have to take before God will fix Gaines. He responded with something that to me was so profound. He said, "This is not a punishment, Brittany". Most days I know that, but I'd never really realized that some days, that's the way I look at it. Like a punishment that I've been trying so hard to get out of.
Beau also reminded me that we could have been home a long time ago...without Gaines. To me that just sort of put things in perspective. Gaines may have days that he doesn't do well and he may have days of no progress but at least he has days. I realize now how very blessed we are to still be here.
Speaking of when we get back home, I'm pretty sure Gaines is not going to be up for daycare right away. We'll probably try and keep him at home through this winter and early spring next year. So, if any of you out there have any suggestions as to where we could find a nanny (can't believe we'll have a nanny...that sounds ridiculous to me) that's willing to work out of the goodness of her heart (kidding obviously) let me know. I have no idea when we'd need them but I figure we better start slowly looking around. I'm only putting this out there because you never know when someone will know someone looking to do something just like this.
Enough of my rambling...I think Gaines is doing pretty well today. His oxygen stayed in the 40s all night and when I left after my visit this morning he was at 44 and doing well. Hopefully they've been able to bump him down some. I told him I wanted him to be in the 30s by tomorrow. Maybe he'll finally start listening to me.
He's gained more weight and is now up to 4 lbs 8 oz. Beau and I agree that he's starting to fill out some. His cheeks looked a little chubbier to me. They've increased his feedings again so he's now up to 40 ccs every three hours (30 ccs is 1 ounce...just for reference).
Last night at church the closing song was I'll Fly Away. It kind of suprised me because this church didn't seem to me like the old hymn singing kind of church but I loved it. The last verse is:
Just a few more weary days and then, I'll fly away.
To a land where joy shall never end, I'll fly away.
Now I know that I'm taking some major liberties with this but it made me think about our situation here. Just a few more weary days and we'll fly away home, a place where joy shall never end. Cheesy I know but it just kind of stuck with me. Ok...now I'm really done with the rambling.
I can't believe some of the stuff I put out here for complete strangers to read...and worse, people I actually know. Oh well...I guess you'll all really know me now...the good, bad, ugly and random.
I guess that's about all for now. Beau is helping some of our new friends move today so its been just me and Reed this morning. He's napping now so I think I'll try and rest a bit.
Please keep us in your prayers. Pray that Gaines' lungs improve and that we don't have to celebrate the fourth of July here.
Love to all,
Brittany
The changing of the month means that our doctors get changed around again. The bad news is that we lose a great doctor that's been seeing Gaines from the start (although he'll be around some because he has a research project going on at GWUH). The good news is that the fellow that was around for Gaines' rough few days is back. We really love both of the fellows and the attendings that have been taking care of Gaines. I talked to the new fellow this morning and she said that she was going to try and get him out of here this month. She followed it up with what we've known all along..."its up to him though". I know that she meant Gaines but I think the "him" that's its up to is the one with the capital H.
This month also brings several things that I had hoped to celebrate at home. Beau and I will have been married for five years on Friday, my birthday is the next Friday and Fathers Day is the next weekend. I'm afraid we'll have to celebrate each of these things in D.C. I'm sure Beau will try and get away with saying he took me to D.C. for our anniversary.
I'd gotten kind of down the last couple of days because I'm so ready to get my family back home. I'd cry and ask Beau when is this going to end and how are we going to handle it once we did get back home. I'd want to know how much more do I have to take before God will fix Gaines. He responded with something that to me was so profound. He said, "This is not a punishment, Brittany". Most days I know that, but I'd never really realized that some days, that's the way I look at it. Like a punishment that I've been trying so hard to get out of.
Beau also reminded me that we could have been home a long time ago...without Gaines. To me that just sort of put things in perspective. Gaines may have days that he doesn't do well and he may have days of no progress but at least he has days. I realize now how very blessed we are to still be here.
Speaking of when we get back home, I'm pretty sure Gaines is not going to be up for daycare right away. We'll probably try and keep him at home through this winter and early spring next year. So, if any of you out there have any suggestions as to where we could find a nanny (can't believe we'll have a nanny...that sounds ridiculous to me) that's willing to work out of the goodness of her heart (kidding obviously) let me know. I have no idea when we'd need them but I figure we better start slowly looking around. I'm only putting this out there because you never know when someone will know someone looking to do something just like this.
Enough of my rambling...I think Gaines is doing pretty well today. His oxygen stayed in the 40s all night and when I left after my visit this morning he was at 44 and doing well. Hopefully they've been able to bump him down some. I told him I wanted him to be in the 30s by tomorrow. Maybe he'll finally start listening to me.
He's gained more weight and is now up to 4 lbs 8 oz. Beau and I agree that he's starting to fill out some. His cheeks looked a little chubbier to me. They've increased his feedings again so he's now up to 40 ccs every three hours (30 ccs is 1 ounce...just for reference).
Last night at church the closing song was I'll Fly Away. It kind of suprised me because this church didn't seem to me like the old hymn singing kind of church but I loved it. The last verse is:
Just a few more weary days and then, I'll fly away.
To a land where joy shall never end, I'll fly away.
Now I know that I'm taking some major liberties with this but it made me think about our situation here. Just a few more weary days and we'll fly away home, a place where joy shall never end. Cheesy I know but it just kind of stuck with me. Ok...now I'm really done with the rambling.
I can't believe some of the stuff I put out here for complete strangers to read...and worse, people I actually know. Oh well...I guess you'll all really know me now...the good, bad, ugly and random.
I guess that's about all for now. Beau is helping some of our new friends move today so its been just me and Reed this morning. He's napping now so I think I'll try and rest a bit.
Please keep us in your prayers. Pray that Gaines' lungs improve and that we don't have to celebrate the fourth of July here.
Love to all,
Brittany
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