A Long Day

The day began early...4:40 AM. For some reason unknown to Brittany and me, Reed decided to wake up at 4:40. He wasn't scared or crying, he was just ready to start the day. After coaxing him back to bed for an hour, we started the day before 6:00.

Brittany went to visit Gaines early this morning. She arrived at the hospital before 8:00 AM. She spent more than and hour and a half with him. He is still at 50% oxygen and on 3 liters of flow. He seems to be breathing a little easier as each day passes. He now weighs 8 pounds 9 ounces.

After Brittany got home from visiting Gaines, we took Reed to a birthday party. He played non-stop. The birthday party was at a park. Reed was either sliding down the slide or swinging the entire time. He only stopped for birthday cake and ice cream. After the birthday party we ran errands (Reed slept in his car seat). After a quick lunch we spent two hours at the pool with Reed and then I went back to the hospital and spent two hours with Gaines. What a day.

Please remember to pray for Gaines. There is a possibility on Monday that the doctor will try and wean Gaines' flow to only 2 liters. Brittany and I are not quite sure that Gaines is ready for this. We are going to have a long talk with his doctors before any decision is made. Don't get me wrong, Gaines is doing very well. We just don't want to push him too hard too quick. Please pray for Gaines and everyone involved that the right decision is made.

Monkey See, Monkey Do

Gaines seems to be doing better today. His oxygen has been around 50%. Some times it has been a little higher but it has stayed at or around 50%. He also seems to be breathing a little easier.

Below is a video of Reed. Brittany set Reed in the driver's seat of her car this morning while she put something in the back seat (the car was off and the key was not in the ignition). Apparently, he thinks he knows all there is to know about driving.

Still holding on to 3 Liters

Gaines is still doing okay on 3 liters of flow on the modified cannula that acts more like CPAP. His oxygen requirements did creep up just a bit. When he was switched to 3 liters on Monday, he was at 49 %...he is now at 52%. Not really a big deal, we will be more than happy if he can stay on 3 liters with oxygen in the 50's.

Not much more to update. He now weighs 8 pounds 4 ounces. Please pray that he holds on to 3 liters and begins to make progress with his oxygen.

Beau

3 Liter Update

So Gaines has been on 3 liters for a good 24 hours now. I think the general consensus is that he's not doing awesome with it (like I'd hoped) but he's doing ok. Yesterday he was at 4 liters 39% and today he's at 3 liters 52%. I don't think that's too bad. I'm not exactly sure what the doctor thinks since I didn't see him today but his nurse thinks he just needs a couple of days to get used to it. My prayer is that he won't go above 52%. I'm not so focused on him weaning down right now as I am just holding on where he is.

His nurse thinks that he's breathing harder today but I'm not so sure. This is her first day with Gaines so I think she just doesn't know his "normal"...Gaines just breathes hard. He might be breathing a touch harder than normal but I think its just going to take him a little while to get used to less pressure. Honestly I think it might take a little more than a week before they are ready to wean his flow again. Hopefully in a day or two he'll be able to start weaning down some but I'm afraid I'm going to have to keep praying for patience. Last week's doctor warned me not to expect last weeks progress to keep up so I'm trying to remember that even though he's not doing awesome at 3 liters, at least he's holding on and that is progress.

In Reed news, he had a little milestone today. When I picked him up from school he asked to get some water from the water fountain. Of course I didn't think he could do it but I entertained him and let him try. Well he drank out of it like he's been doing it all his life (and he might have been doing it for who knows how long). I mean, that's such an elementary school think to do and he's not even two. I'm telling you people...he's advanced.

I guess that's about it for tonight. I'm going to try and get to bed early.

Love to all,

Brittany

Miffed

I'm miffed. I just spent an hour typing a really long post and something happened in posting and I lost the last half of it. I'm going to copy and paste the Gaines part of it and I guess I'll try and re-post the rest of it tomorrow. I wrote a really long piece about our sermon at church on Sunday and how it really struck me. It was about the storms in our lives and how important it is to have faith in God. Anyway, here is the part about Gaines for now. I'm so disappointed that I lost all of that!!

All is still well today. Late this afternoon Gaines' doctor gave the order to bump him down to 3 liters. This doctor is new to us but seems great so far. He was very thorough and according to our nurse, spent a good bit of time with Gaines today. He called me this afternoon and we talked for a while about what has and has not worked for Gaines. He said that he wanted to talk to me because he didn't want to try something with Gaines that had already failed. Long story short...he's down to 3 liters and I guess we'll see if he tolerates it.

Please pray with us that he does. He has made so much good progress lately and all of his nurses, therapists etc agree that he is doing so much better. I have noticed in the last 10 days or so that he seems so alert. Over the weekend he cooed at me a little bit and today he was really trying to hold his head up on his own. The pictures that we post of him seriously do not do him justice.

Love to all,

Brittany

Reed's Big Jump Today, Gaines' Big Jump Tomorrow

We took Reed to the pool today and he kept pointing towards the deep end and saying "jump". I thought he was pointing and talking about the kids jumping off the diving board. I took him to the deep end so he could watch. Once we were in the deep end, he pointed to the diving board and said "jump". I thought "surely my 22 month old son doesn't want to jump off the diving board". I asked the life guard if he would help. I got in the pool below the diving board just in case and the lifeguard walked Reed to the end of board. There was no hesitation. He jumped. After the first jump he probably jumped 20 more times.

Gaines' big jump takes place tomorrow. The doctors are going to try and wean his flow from 4 liters to 3 liters. They will increase his oxygen from 40% to compensate for the lower flow. The doctor reminded us today that he may not tolerate 3 liters. Please pray with us that Gaines surprises us all and keeps heading in the right direction.

Below are two videos. The first video is of Gaines. It was taken yesterday (Saturday). The second video is of Reed's big jump off the diving board.

8 Pounds

We took Reed to the Biscuits Game last night and he had a blast. I'm not sure if he actually watched any of the game, but he loved being there. We did take the camera to the game but the battery was dead. Sorry, no pictures.

Gaines had his 3-month immunizations today. His nurse told us that she put it off all day long. The last thing she wanted to do was to give him a couple of shots. Gaines did fine and is doing well. He is still on 4 liters at 40% oxygen. It has been such a blessing that he has been able to maintain this for several days. On Monday, the plan is still to reduce his flow to only 3 liters. Please pray that he will be able to tolerate this amount.

Gaines has hit the 8 pound mark. Last night he weighed 8 pounds 1 ounce. The doctor thinks he might be retaining some fluid. They are going to monitor his weight gain over the next several days and will give him a different diuretic if he gains too much weight too fast.

Please pray for healthy weight gain and that Gaines will tolerate the reduced flow of 3 liters.

Beau

No News is Good News

Gaines' oxygen requirement fluctuated today between 40% and 45%. Most of the time he was at 40%. In the past five days Gaines has gone from 5 liters at 65% to 4 liters at 40%. The nurses did not try to wean his oxygen today (doctor's orders). The doctor also told us that Gaines' oxygen will probably not be able to be weaned more than 2-3% every 2-3 days.

Gaines did take 23 CC's at his 11:oo bottle feeding today and took 12 CC's at his bottle feeding tonight.

We should have more pictures to post tomorrow. We are taking Reed to the Biscuits' Game tomorrow night (minor league baseball).

Beau

More Progress

Today was another good day for Gaines. I love typing that! When I called this morning his nighttime nurse told me that he was down to 40%. I almost fell out of the bed. Right before bed they told me he was at 47% so I was shocked to hear 40. Beau actually thought I said 50 when I told him.

His doctor today told the nurse that he shouldn't be weaned anymore today so he's holding strong at 40%. I think he subscribes to my fear of going too fast. He doesn't think that they should wean Gaines more than 2-3% each day. I'm fine with that. Obviously I want this to go as fast as possible but I'm also afraid of too much too fast. Its such a weird feeling. Either way, I'm proud of my little Gaines.

So, not much has changed today in the world of Gaines.

I was happy with my talk with the doctor yesterday. I think Beau recapped the conversation so I won't bore you with it again but it made me feel a lot better. I just get fired up about things kind of easily sometimes. I really shouldn't but in my defense...I think its genetic.

Anyway, we are all still doing well here. Reed is getting better and better with his talking everyday. He and Beau practiced his first and last names today and he can now say "Reed Danny". Pretty close. Makes me laugh.

Please continue to keep our little Gaines in your prayers. Please pray for his lungs to continue to make steady progress.

Love to all,

Brittany

Some Clarity

We were able to speak to Gaines' doctor today and now have a much better understanding of "the plan". The plan is to allow the nurses to wean Gaines' oxygen as they see fit. The doctor did order the oxygen to be weaned if Gaines' SATS are above 93%. The doctor also ordered to try and wean Gaines' flow by one liter each Monday. That is why his flow was weaned from five to four liters this past Monday. Since being weaned to 4 liters on Monday, Gaines has done very well. This afternoon he was on 46% oxygen and his SATS were really good. He is also doing well with his weight, currently at 7 pounds and 11 ounces. His bottle feeds are about the same...he is taking between 5 and 15 CC's by bottle every 9 hours.

The doctor also clarified the amount of progress Gaines needs to make in order to go home. Home Health Care Companies in our area can support a baby on 2 liters and 100% oxygen. However, our doctor explained that Gaines would need to be on a little bit less than this. If we take Gaines home on 2 liters and 100% oxygen and something were to happen, we wouldn't have the ability to give him any more flow or oxygen. The doctor would rather Gaines go home on a little less than 2 liters and 100% oxygen...this gives us a little wiggle room once we get home.

The doctor also told us that once Gaines hits 2 liters of flow we will begin to talk about Gaines going home. He told us not to expect to take him home soon after he reaches 2 liters of flow. He will need to sustain 2 liters for an extended period of time.

All in all, we feel much better. We know and understand the plan and are comfortable with it. We are also excited with Gaines' progress the past five days. We have been told good progress would be for Gaines to reduce his oxygen requirement by 2% per week. In the past five days, he has reduced his oxygen requirement by 19%. He is doing very good.

Please continue to pray for Gaines. He still has a long road ahead. By the way, today is day #102 in the NICU.

Progress and Confusion

I am yet again pretty confused about what's going on with Gaines...don't get me wrong, he's doing great, I'm just not sure what the current plan is. When I left this evening he was down to 4 liters, 50% oxygen and doing well with it. I was really glad to see this. I would like to be able ot fill all of you in on the plan for Gaines but today's doctor didn't call me like I'd asked him to so I don't know it. I was really irritated over this...to say the least. I really am over it now but I was pretty miffed this afternoon.

Anyway, he wrote orders for the nurses to wean Gaines' oxygen or flow as needed but this concerns me. Nobody wants Gaines weaned down more than me but I am so afraid of going too fast. I feel like that's what happened when we first got here. Because he'd been on a lot of pressure, he was able to take less pressure for a while, but he eventually backslid until he was up to 5 liters, 65%. I'm afraid he'll do well with his weaning so they'll keep pushing him until he bottoms out and has to start over again.

I'm fine with the nurses weaning the oxygen, I just wish the doctor would give the order to wean the flow. I kind of feel like once his oxygen gets below 50% or whatever and if his blood gases are good, then he's ready to wean the flow again...or some sort of plan so that its not just at the discretion of whoever happens to be on that day. Don't get me wrong, I love our nurses and I totally trust them with Gaines, I'd just feel better if a nurse and doctor agreed that he was ready. All I want is for Gaines to progress quickly but quickly hasn't seemed to be his thing so far and I'm very apprehensive about him being weaned too fast. Please keep his doctors and nurses in your prayers. I pray for patience and wisdom for everyone involved...doctors, nurses and me.

Also, this afternoon I was able to help give Gaines a bath. He got a bath in his very own bathtub and really seemed to enjoy it. His nurse yesterday asked that I bring his tub up there. He's also getting to watch movies these days too. He's been watching The Jungle Book the last few days.

I'm supposed to get to the doctor tomorrow and I hope to be able to voice all of my concerns with him openly. Please pray that I'm able to do this without holding back for fear of being rude or without getting upset. I got a little upset this afternoon on the phone with the nurses. I've just been so worried about having a new doctor and when he didn't call I guess I probably took it as him not caring about Gaines as much as I felt he should. I think any mother would want the absolute best care for their child.

Oh, PS...we passed the 100 day mark a few days ago. It just slipped right by me. I'm going to go for now. My eyelids are awfully heavy. Please continue to pray for Gaines. Pray for his lungs to heal and for him to get better at taking his bottles.

PPS...I realize that this post is a rambling mess but I'm too tired to give it the editing that it needs.

Love to all,

Brittany

A Good Weekend Comes to an End

All in all, this has been a pretty good weekend. Gaines' oxygen requirement is down to 48%. The doctor was tempted to wean his flow today but decided to wait until tomorrow for two reasons. The first reason was because he (our doctor) rotates to another hospital tomorrow and wanted to let the incoming doctor make the decision. The second reason was to give Gaines time to rest and become comfortable with only 48% oxygen.

As I mentioned, the doctor that has been taking care of Gaines for the past two weeks will rotate tomorrow to another hospital. Brittany and I are both apprehensive about the change in doctors. We really like the doctor he has had for the past two weeks. We are concerned that the new doctor will want to come in and change everything around. All of the doctors are in the same practice, but they all have different methods and different ideas. We are just going to have to speak up and make sure that the new doctor continues with the current method of treatment. Gaines has made progress in the past couple of days and we would like to see if he can make a little more.

By the way, the new "schedule" we are keeping is exhausting at times. I think it got the best of Brittany, Reed, and Jack (our dog) today. Below is picture of all three of them snuggled together on the couch.

I could get used to this

Today has been another good day for Gaines. I love getting to type that. When I was at the hospital tonight he'd gotten down to 52% and was doing really well with it. I'm HOPING that maybe he hits 50% tonight. I don't really know when they'll try and wean his flow again but the I think the doctor mentioned that he might once he got down to 50% or so. We'll see. One thing holding him back from going home is the level of support he's on right now. All of the home health care companies in our area only support 2 liters of 100% oxygen. Right now Gaines is on 5 liters at 50%. Don't ask me how the two compare...I have no idea. All I know is that right now he's not ready.

Also, today Gaines took 15 ccs of his bottle for me. He did it for the nurse a few nights ago but tonight he did it for me. That's another hurdle he'll have to cross before he can go home. He'll need to take all of his bottles by mouth. I believe if the only thing holding him back was his feedings, and he's not making any progress with it, they'd consider a feeding tube for him but that's not something I'd like to have to deal with. I'm pretty sure that would require a surgery.

Anyway, all of that to say he had a good day today. He was super alert both times I visited today and yesterday afternoon. I love when he's like that. He just looks around and today he smiled at me when I smiled at him...like three times. Now, I'm no expert but I think that makes him advanced for his adjusted age. Right now, even though Gaines is just over three months old, developmentally he is only about a one month old. The only problem with Gaines being so alert is that it REALLY makes me want to get him home. Right now he acts like any other one month old...he just needs help breathing and eating. Imagine not being able to have your one month old at home with you...its hard. Its not like he's sick and and just laying in a bed...he's active and needs to be loved on. Luckily, I don't think he's getting any shortage of that from his nurses. They all seem to really love him.

Oh, and another thing. I know that Gaines is mine and I'm supposed to think he's beautiful and all but...he really is. I mean, he's gorgeous. Just thought you all might like to know. I took these pictures of him tonight right before I left. He's in his pompasan chair and I had just tucked him in. He's got his new little frog blankie with him...a gift from his Babs. I really think he likes it.

I'm going to run for now. Enjoy the pictures.

Love to all,

Brittany

Slow and Steady Wins the Race

The past few days have been really good days for Gaines. He is currently on 5 liters of flow and has been weaned down to only 56% oxygen. When he first arrived in Montgomery, Gaines was on nasal cannula at 2 liters of flow and only 35% oxygen. Brittany and I believe he tolerated this because his lungs were still "open" from being on CPAP in DC. During the 3.5 weeks he has been in Montgomery, Gaines has slowly required more oxygen and more flow. However, the past few days Gaines has shown signs of progress on 5 liters of the high flow nasal cannula. It has taken 3.5 weeks but I think we have finally found a good "cocktail" of medicines to complement the high flow nasal cannula. The "medicine cocktail" is helping him reduce the fluid in his lungs but still allowing him to gain weight. Which by the way, he now weighs 7 pounds 12 ounces.

Below is a new video of Gaines that Brittany made yesterday.

Short and Sweet

Just a quick one this morning. Gaines is doing really well right now. His nurses are weaning his oxygen ever so slowly (1 point every 3-4 hours) but it seems to be working. They've weaned him down to 58% and he's doing really well with it. At his last bottle feeding he took 15ccs which is about a quarter of his bottle. Please pray that he keeps making this slow and steady progress and for another good day.

Love to all,

Brittany

Another Good Day

Gaines had a good day. He has been fairly calm and maintained his oxygen requirements. The doctor said his chest x-ray looked even better today than yesterday. I think the extra dose of lasix has really helped him.

The doctor did increase the amount of lasix Gaines is getting per day. I think the doctors were hoping they could keep the amount of lasix the same as he got bigger. Thus, the dosage would "get smaller" relative to his weight. However, this has not been the case. It appears that Gaines still needs a decent amount of lasix to help with fluid retention.

Oh yeah, kind of a neat story. Our neighbor in Montgomery is a doctor. He was at the hospital yesterday and stopped in the NICU when Brittany was visiting. Our neighbor is not a neonatologist. He stopped by specifically to see Gaines. He told Brittany he wanted to meet the little guy that he had been praying for. Brittany and I both thought that was really cool. It made me realize there are many people who have been praying for Gaines that will never meet him. It made me realize we will never be able to thank all of you because we don't know many of you. Our family has been blessed in so many ways throughout this journey and the biggest blessing has been the prayers that have been prayed for our family. To our friends, family, and strangers: Thank you for joining us on this journey. Thank you for praying for us during this journey. It has been a long journey, almost 4.5 months since Brittany was admitted to GWUH in DC. One of our prayers that you continue this journey with us and that you continue to pray for Gaines.

Beau

A better day

Thankfully, Gaines had a better day today. Last night he did receive a blood transfusion and continued the extra lasix. He actually gained weight last night; however, we expect him to lose a decent amount of weight tonight due to the lasix. Gaines' nurse said he was much more active today and "looked" better. He did get another chest x-ray and the doctor said it looked much clearer. Since the x-ray was better and Gaines "looked" better, the doctor does not think that the pneumonia is a possibility (big sigh of relief).

The plan for the next 24-48 hours is to let Gaines rest. The doctor and nurses are not going to try to wean his flow. They are going to let the lasix continue to work and get a chest x-ray once per day. Hopefully, the next couple of days will be uneventful.

Thank you all for praying for our little guy. Please continue to do so.

Beau

It's been a while...

I'm not quite sure where I left off with the Gaines report. I haven't posted in a few days. Between hospital visits and life, its not always easy to get on here and post. The good news is that I had a really productive weekend and got to spend a lot of good time with Gaines.

Ok...let see. Late last week Gaines was on 5 liters and somewhere between 60-80%. I visited early Saturday morning and he was back to around 60% so I was happy. Later that morning the doctor called me to tell me that he wanted to wean Gaines down to 4 liters. Of course I was on board. He had no problem weaning down and seemed to have a good weekend on 4 liters and 60-65%.

Overnight he crept up to around 70% and this morning the doctor decided to put him back at 5 liters. I'm not exactly sure why because Sunday he seemed happy with his progress. His nurse says its because his sats were hanging in the low 80s and the doctor didn't want to go too high on the oxygen. They also did an x-ray (they do one about every other day here) and it showed that his lungs looked pretty cloudy. The doctor thought it could be one of several things.

One thing he was concerned about was possible pneumonia so they did some blood work which, sigh of relief, came back fine for now. The other thing he thought was that it could be fluid so he's getting two extra doses of lasix. He's had some crazy weight gain patterns lately so that doesn't surprise me. Hopefully the lasix will help him breath a little easier. He's also getting some blood today (which I have mixed emotions about) but maybe it will help. I've just been under the impression that he shouldn't be getting blood now because it sort of tells your bone marrow to quit producing red blood cells...which we don't want. I'm sure the folks with medical degrees know a little more than me...I was just surprised that they wanted to do that.

So, I guess the bottom line is that today wasn't Gaines' best day but with the lasix and new blood, tomorrow should be much better. Please keep him in your prayers. If Gaines got pneumonia it could be really bad for him.

Everything else is going really well for us. We are still really thankful to be home and are settling into a new routine. I feel like we go non-stop but I'm getting used to it. It hit me tonight that Reed is fairly close to turning two so I'm mulling over birthday party ideas in my head. The last few months have gone by painfully slow yet they've flown by. Weird concept I know.

I guess that's about it for tonight. Please really keep Gaines in your prayers. He's not quite out of the woods just yet. Right now he's fine and we are just trying to figure out how to get him home but the doctor reminds me that he is still at risk of developing things (pneumonia, pulmonary hypertension) that could be really bad. Also, keep praying for his little lungs to improve.

Love to all,

Brittany

New Pictures and an Update

Gaines has made some progress over the past couple of days. To recap, on Friday he was at 5 liters of flow and about 80% oxygen. Since Friday, Gaines' oxygen requirement dipped to about 60% on 5 liters so the doctor decided to wean the flow. The flow was reduced to 4.5 liters on Saturday morning and Gaines tolerated it. Saturday afternoon the flow was reduced again to 4 liters and he tolerated that as well. This morning, he is on 4 liters of flow and 70% oxygen. Praise God for small steps forward.

The little guy has continued his weight gain. This morning he was up to 7 pounds 7 ounces. At this rate you will be able to use the term "chunky" to describe him very soon.

Below are a few new picture of Gaines. Please continue to pray with us for his lungs to heal.

Beau

Footprints

According to Gaines' nurse, today was a pretty good day. He rested most of the day and his breathing was not labored. He spent some of the day in his "bouncy" chair and the nurses held him some of the day as well. He is also up to 7 pounds 3 ounces.

On a different note, I have been asked to speak at a Charity Golf Tournament. Basically, a luncheon will be held the day of the tournament and I will share Gaines' story with the golfers. The purpose of me speaking is to better inform the golfers of the "NICU experience". The tournament benefits a non-profit organization based in Montgomery, AL known as The Footprints Ministry. The Footprints Ministry supports families who have had a baby admitted to the NICU. Their web page pretty much sums up their mission by stating "Our prayer is that we will share the love of Christ with NICU families and provide support and encouragement to them during the most exciting and difficult time in their life". If you would like to learn more about this ministry, their website is listed below.

www.nicufootprints.org

By the way, Gaines is 3 months old tomorrow, Friday, July 24th. He has come so far in these past three months. Brittany and I know his progress is directly attributed to answered prayers. That being said, please continue to pray for him.

Beau

Gaines' Condition Update

I don't really have much of an update. Gaines is having a really good day but really not much has changed today. Gaines really seems to be taking to his new cannula. I found out today that it is a high flow/high humidity nasal cannula and it is a lot like CPAP. It offers more pressure like CPAP which Gaines really seems to respond to. I think I'll update you all on Gaines' condition. I don't know that I've really done that in a while...probably because I am only now coming to really understand it.

Gaines' lungs are not like regular 29 week preemie lungs. His lungs were/are much, much worse. A normal preemie has immature lungs...Gaines were immature as well but they are also hypoplastic. This link (http://www.pediatricweb.com/seattle/article.asp?ArticleID=829&ArticleType=9#1) does a good job of describing the differences in immature and hypoplastic lungs. His lungs are like this because my water broke so early and he was without fluid for so long not because he was premature. I was blessed to hold off on labor for 5 1/2 weeks but those were 5 weeks that Gaines' lungs didn't get the practice breathing.

I know your next question...would I have been better off having him at 24 weeks? The answer is no. If he had been born when my water broke we'd be fighting an immature lung battle, possible brain issues, possible sight problems etc. Obviously there are 24 weekers without these problems but because of Gaines age and size we didn't have to fight many of the battles that we very easily could have.

Anyway, we have seen several doctors along this journey. Four that we really trusted at GW and three (so far) here that we are learning to trust. While all of these doctors have differing opinions on the best way to actually treat Gaines' lungs, they all agree on his problem and they all agree that his recovery is going to take some time. It could be several more months before he is ready to go home and even then it will be on oxygen and it could be for two years or so. Obviously we hope not but it very easily could be that long.

I'm not sure if I ever passed this along but it can't hurt to tell it again. When Gaines was first born and was having so many problems his doctors told us about three other babies that had similar circumstances as Gaines and that none of them made it. At the time I was under the impression that these had been recent cases. It wasn't until several weeks later that we learned that the doctors meant they had 3 other babies in 25 years with these circumstances. It really makes me realize just how sick Gaines was so early on and how much of a miracle he is now. I said it earlier this week, he shouldn't be here and he is. That is not an accident. God has big plans for this little boy.

I feel very good about where Gaines is right now in his recovery. I really like his doctor this week and I'm very confident that he is doing the absolute best thing for Gaines. I just know that its going to take a while and I'm ok with that (today!). Now that I'm starting to understand more about Gaines' condition I'm much more relaxed day to day as I'm not expecting drastic changes.

One other quick note...Our little 3 pounder hit 7 pounds last night! I tell you...that little boy is so precious. I love every minute that I get to hold him.

Please keep praying.

Love to all,

Brittany

Confused But Positive

I'd love to give you all an update on Gaines but I'm so confused at this point that I don't really know where to start. We got another new doctor this week and he is great but I think I would really like for a doctor to stick with Gaines for a while. They change every week here and its getting a little frustrating to me. I feel like once a doctor gets to know Gaines and starts forming a good plan for him...they are gone. This doctor is on for two weeks so I hope we can get a good plan mapped out and stick to it. He's also new and seems to subscribe to the breathing philosophy that we are used to from GW...not exactly but he's a good middle ground between these and the DC doctors.

So, scratch the old plan that we were on. Now, Gaines is on 4 liters (more pressure), a new type of cannula that provides more humidity (don't ask me why) and less oxygen. I'm not exactly sure where we go from here. The nurses tell me that right now we are trying several different things and seeing how Gaines reacts to each of them. I think then we'll figure out what works best for Gaines...more oxygen, more pressure, etc...a baseline...and then wean from there. They are supposed to be finding out what exactly the home health companies around here will support. Once we get that info, we'll know what Gaines has to be at before he can go home...once he stabilizes and starts taking bottles. I'm not exactly sure when we'll get to the bottles again. I think once we find a good baseline for Gaines. I really like the approach that this doctor is taking of not doing too much at once.

I got a little discouraged this afternoon. Beau met with the doctor and mentioned his personal goal of getting Gaines home before Reed's birthday in October. He feels like the doctor thought that was more of a reasonable goal than my Labor Day. I think we could look at Labor Day as best case scenario. Anyway, I just got kind of down about it...I mean, mid-October means we are only halfway there. I didn't let myself stay down long. I've gotten a new perspective on things again (I've gotten pretty good at giving myself little pep talks).

In the great scheme of things, that would not be that much longer and I'd rather not take him home before he's ready. Also, I'm trying really hard to think about how lucky I am to have these circumstances. I got a little irritated with someone the other day complaining about their baby being so fussy...I wanted to say, just be thankful that you have a baby at home to be fussing. Obviously, I didn't say it but thinking back about it now, what if someone with no baby, or a baby worse off than Gaines hears me complaining about a lung problem that he will get over in time. I guess you just have to keep in mind that someone always has it worse than you.

In other news, Reed slept in his big boy bed last night...all night. He's off to a good start on it tonight as well. He was so proud of himself this morning and kept saying, "My bed, my bed" this morning. Beau and I were really proud of him too. He's getting so big these days. School seems to be going a smidge better. They say he's starting to enjoy himself more but the drop-off portion of the day is still pretty rough.

I love my two little boys and can't wait to get them under one roof. Please keep praying for healthy lungs.

Love to all,

Brittany

No News is Good News

Not much to report today. The doctors started to monitor Gaines more closely today. They hope to begin to wean the flow on the cannula. I guess his "resting period" is over. He has continued to gain weight and is now 6 pounds 13 ounces. Isn't unbelievable he is almost 7 pounds?

Brittany and I are still getting adjusted to being home. I think we have finally settled into a routine. I visit Gaines during the day at his 2:00 PM feeding. I get to spend about an hour with him. Normally I get off work at 4:00 but because of my time at the hospital I now stay until 5:00. Brittany brings Reed by my office at 5:00 and then she visits Gaines until shift change at 6:30 PM. We are all home by 7:00 for dinner and then Reed goes to bed at 8:00.

Fortunately, our Sunday School class is bringing us dinner every other night. This has been a huge help. It is amazing how God continues to provide for us. Please continue to pray for Gaines' progress and that he tolerates the weaning of the flow of his cannula.

Beau

Beaten But Not Beat

Today's been a really good day. Gaines is still doing well but they decided not to try and wean his oxygen today. The doctor really wants to give him a good rest. She mentioned that they might try it tomorrow but then again, they might not. I talked to his nurse today about what exactly the problem was with Gaines' lungs. I asked if it was just that some of the alveoli were collapsed and needed to reopen. She told me it was more like that they were ruined and that his body needs to rebuild them. I'm not sure if that is entirely accurate but it kind of helps me understand what is going on with him.

I got to spend a lot of good time with him again today and Beau and I even got to visit him together. My parents were here and they watched Reed for a little while so we could both go in the NICU. Also a sweet nurse let Reed come back for about one minute today. For the first time ever, Reed un-coached said "Gaines" (came out like Janes) as Beau carried him up to see his brother. Beau and I looked at each other with disbelief. Maybe the little guy understands more than we thought.

This morning at church we had a guest speaker. It was the author of the book 90 Minutes in Heaven. I haven't read it (Beau has) but apparently its a fairly popular little book. I knew something about it because Beau had told me some of it but listening to the guy who wrote it was really a neat experience. Long story short, this guy was in a terrible wreck and was pronounced dead. A preacher that came up behind the wreck about 90 minutes later asked the police officer working the scene if he could pray for the man. He did and while the preacher was praying for him and singing "What a Friend We Have In Jesus" the "dead" man started to sing with him. The book is by the "dead" man and is about his experience.

Several things from his sermon really touched me today but I wanted to share two with you. I'm paraphrasing here, but after the accident the police called his office (he was a preacher too) and left a message with his secretary that he'd been in an accident and that she should gather his family as a police officer was on the way to give them more details...that he had not survived. In the meantime, his church started a prayer chain that resulted in hundreds of thousands of people praying for this man. The man believes that he is in the world today because so many people were praying for him. As soon as he said it, I knew that was true for Gaines as well. Tears welled up in my eyes because I was so thankful for all of the people out there that prayed and continue to pray for Gaines. It is truly humbling to know that one of the greatest gifts of my life is still in this world because of the compassion of family, friends, acquaintances and strangers. By worldly standards, Gaines should not be here. I mean he had to be resuscitated and he's still here...still fighting. Thank you all from the bottom of my heart for your prayers.

The second thing the man said that really struck me was about his recovery after the accident. He was in a hospital bed for 13 months and endured 34 surgeries. He spoke about how he was depressed at times and of many of the struggles he dealt with. Finally he realized that he had been beaten but that he was not beat. Again, as soon as he said it I knew it was the same way that I felt...or should feel. Things have been better since I've been home and 95% of the time in DC I was fine...positive attitude and everything. But there were times that I felt like I'd been beaten...that I'd never be the same again. Obviously I won't ever be the same again but I felt like I'd never laugh again, that I'd never be able to bounce back from this. I felt like the scars from this experience would be with me forever. Hearing this man say this today just made me realize that yes I had been beaten...but I was not beat. I too will be on the other side of a really rough (that may be the understatement of the year) time and that the scars will only be there to remind me of how good God is and how he carried me through this storm.

Just two thoughts of the day.

I better run. Tomorrow is a work day and it is past my bedtime.

I hope you all had a good weekend. Thank you for all of your prayers and please keep them up. Please pray for Gaines' lungs and that he can come home by Labor Day.

Love to all,

Brittany

Normal Saturday

Its been a good day here again. Gaines is doing well so that makes me happy. He's still resting with his three liters and 100% oxygen but I got to spend a lot of time with him today. This afternoon he was awake while I was holding him and he was looking around all bright eyed and alert. They are giving him these sucker type things to suck on since they aren't really trying the bottle feedings right now. They look like a lollipop but are lemon flavored and I think they are to help keep his sucking reflex active. Its so funny to see him laying there with a stick hanging out of his mouth. He was really going to town on those things today. Anyway, tomorrow they will probably start to wean the flow of his oxygen. Please pray that he tolerates that well.

I mentioned my Labor Day goal to the doctor this morning and she felt like it was a reasonable goal. She didn't say, "Oh, he'll surely be home by then" like I had hoped but she didn't shoot it down either.

The rest of the day has been pretty good as well. We ran some errands and Reed went to a birthday party. My sister and her boyfriend came over for dinner and Beau is cleaning up the kitchen right now. I know...I have a really great husband. All in all its been a fairly nice and normal Saturday...especially considering multiple hospital visits are now part of our routine.

Anyway, its late for me so I better run. I don't think Reed is going to let us sleep past 6 ever again. Or once he does, Gaines won't. It will be so weird to have two kids at home...I can't wait!

Love to all,

Brittany

Friday Night

I'm feeling better today but I didn't think I was totally well yet so I didn't go see Gaines today either. Beau got to go twice. I HATE not going but I know its the best thing for him. I would die if he got sick and it was because of me. I had a little fever this morning but nothing now so I should be good for tomorrow. I bet he's grown.

Gaines didn't have his best night last night (probably because he missed his mom). His oxygen was between 75-80% so his nurse checked his blood gases and they didn't come back great so they did a chest x-ray. The nurse practitioner didn't see anything on the x-ray to cause her to change things so they waited until the doctor saw him today. Keep in mind that (according to our doctor) 75-80% is not much more than 60% on cannula because he breathes in room air around his nasal prongs.

So...when the doctor saw him today she made some changes. Basically, she thinks that Gaines was just getting tired and she wants him to rest for the next 24-48 hours. Right now he's at 100% oxygen at 3 liters. Obviously, his sats are great. The new plan is to leave him at 100% and in a day or two, start to wean the flow. This makes sense to me because when we take him home on oxygen, he'll be at 100% just hopefully less flow. They aren't trying any bottle feedings for 24 hours because they really want him to rest.

Also, he's back on the lasix and on a higher dose. He had an eye exam today and passed with flying colors. I'm not exactly sure why he needed it since his last one at GW was great but whatever.

I'm coming to terms with the going home on oxygen deal. I think I was a little sad about it because through this whole deal I'd been focusing on the "prize"...getting to take a healthy Gaines home. I just feel like now I'm not getting the prize. I'll be taking a not totally healthy Gaines home. Beau says that's still the prize, we just have another step before we get there. I know that he's right and I'm warming up to the idea...I guess I'd better. I just hope that he's home by labor day.

I guess that's about it for now. Beau and Reed are watching cartoons on the couch before bed I think I'll join them.

Love to all,

Brittany

Gaines' Condo

I visited Gaines twice today because Brittany is under the weather. This morning she thought it might be allergies but this afternoon she started to develop a fever. She actually fell asleep tonight at 7:15. I think she has exhausted herself. I'm hoping about 12 hours of sleep will do the trick.

Gaines continues to be doing okay. His oxygen is hanging around 60% and he lost 2 ounces last night. He is now 6 pounds 6 ounces. There is really not much more to report. I did remember to take pictures today so they are posted below.

Beau

Forgot the Pictures

When I left for work this morning I forgot to take our camera with me. Brittany remembered to take the camera with her but she forgot to take pictures of Gaines' new "condo". I describe it as a condo because it has all the bells and whistles. I think Brittany got a little excited when we were told that we could bring some stuff from home for Gaines. She packed a quilt to lay over his mattress. She packed several blankets, a stuffed elephant that plays music, his boppy pillow, his car seat and his mobile. I almost had to make two trips into the hospital. It was a lot of stuff.

When I visited this afternoon the nurse was getting ready to move Gaines bed. He is now in the corner of the NICU, almost by himself. He is the only baby in a toddler bed, the only baby with a mobile, and the only baby with toys. He really seemed to like the mobile. He stared at it and listened to the music. The nurses told me that if other parents questioned all his stuff she would tell them it was perk you got after three months in the NICU.

The doctors did temporarily change some of his medicines. He is not getting lasix for the next couple of days. The lasix are being temporarily replaced by a stronger diuretic. His oxygen requirement has increased from 35% to 75% since he arrived in Montgomery one week ago (he has maintained 2 liters of flow). The doctors believe he is probably retaining some fluid. Oh yeah, he now weighs an even 6 pounds 8 ounces. He has more than doubled his birth weight.

Gaines did get to meet his Great Uncle Anthony today (Brittany's side of the family). He has met a lot of family in the past couple of days.

I promise we will have pictures tomorrow. Thank you for all the prayers thus far...please continue to pray for Gaines' lungs.

Beau

He's growing up

During our visits with Gaines today he was given a bigger bed. The nurses told us that he is getting older, longer, and needed a change of scenery. It is kind of funny to see him in his new bed because it is a pediatric bed. The bed looks enormous! The nurses also told us that because he is getting older (almost 3 months old) he is getting bored. The new, bigger bed allows us to attach a mobile and to bring him a few toys. We are also going to bring his car seat so he will have a different place to rest other than his bed. The nurses are already giving him some time in an infant swing. I will try and take some pictures of his new "home" tomorrow after we get it set up. I'm sure all the other babies in the NICU will be jealous.

I think Brittany mentioned in the previous post that they reduced Gaines' cannula to only 1.5 liters of flow. This morning they had to increase it back to 2 liters. His oxygen requirement on 2 liters is 55% right now.

Brittany and Gaines' nurse had a good long talk today about his oxygen. I think it is finally sinking in that it is no longer possible that Gaines will be sent home on oxygen...it is probable. According to the nurse, 95% probable. I guess that will just be another step in this journey. We have to keep reminding ourselves...one step at a time.

Beau

Long But Good Day

Tonight's post is a quick one. Beau and I both had great days at work today but I feel like I've been running non-stop. I'm back in the swing of things at work which is really nice. I love my job and being busy makes the day go by faster. It was also really nice to see so many people that have been praying for our family.

Beau went to visit Gaines today at 2:00 in the afternoon. Right after work I picked up Reed, quickly dropped him off with Beau and headed to the hospital. I spent almost an hour and a half with Gaines but it didn't seem like much at all. We have to be out between 6:30 and 7:30 so I leave at 6:30 and come home for dinner and to spend some time with Reed before bed. I hadn't factored in when we planned this all out that I would lose time with Reed. I feel a little pulled between my two boys but I imagine this is the first of many times that will happen.

I also feel a little guilty for not going back for a later night visit. The nurses just don't like us to mess with him between feedings (he needs to rest) and his next feeding isn't until 10. Beau had a good idea that maybe Wednesday or Thursday of the week we can go up for a late feeding. That way we don't wear ourselves out at the beginning of the week but we could get in a Gaines-fix to get us by until the weekend. We'll get it all worked out.

Anyway, today they are trying to wean Gaines' flow so they bumped him down to 1.5 liters while I was there. He seemed to be doing pretty well on it. I'm anxious to see if he's still doing well with it when we call back tonight. They are trying to wean his flow since he hasn't really come off of his oxygen much. I think they feel like he may have to go home on oxygen and they are trying to get him to a manageable level. Not exactly what I wanted to hear but we'll cross that bridge when we get there.

That's it for now. Its not much but its all I've got energy for at the moment.

Love to all,

Brittany

Sunday Evening Post

We have had a great couple of days here in the Daniel household. We've been able to get unpacked and mostly organized, visit with lots of family, go to church, spend a good bit of time with Gaines and we were even able to fit in a swim with Reed. It is SO nice to be back.

This morning at church we sang the Doxology at the end of the service and I almost cried. For some reason I've always loved that song and singing it each is one of the things I love about our church. I'd been wanting to sing it for a while as our church in DC didn't really sing a good hymn like I like (I need a church with hymns and pews) but today the words also had a special meaning to me. God is the source of ALL our blessings and I have so many.

Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above ye heavenly hosts
Praise Father, Son and Holy Ghost
Amen

Gaines is still doing well on the nasal cannula. He's still at 2 liters and about 40% oxygen. I wish I knew exactly how this compared to CPAP but I don't. I talked to the doctor about it yesterday and he seems to think that nasal cannula on 50-60% oxygen would still be a step in the right direction so I guess we are happy with where he's at. The doctor also told me that if he handled it for about 72 hours, you could pretty much assume he is "on" nasal cannula. This morning Gaines hit 72 hours. I'm so proud of him for maintaining this.

Honestly, I intended to really push the CPAP with the doctors here (I even brought some of the old doctor's research with me) but the doctor here seems to have just as good of a reason not to use it. It's so hard to know what to think...which option is the best? Right now we've decided to just go with these doctors and see if a new treatment shakes things up a bit. I'm hoping to start to see some oxygen weaning about Tuesday or Wednesday this week.

Gaines is still doing really well at taking his bottles. He took 35 ccs for me yesterday and did it again today...only 18 for Beau. The last few days they've been bumping his oxygen up during feedings but they didn't need to today. I guess he was showing out for all of his family that came to see him. My mom, grandmama, granddaddy, aunt, sister and three cousins came to see him today. I'm afraid the hospital is going to start charging us for the soap scrubbies that we've used. Seriously, we are so blessed to have the family that we have. They've been so supportive through this whole thing.

In other news, Reed is back in the crib tonight. He'd been in his big boy bed for a few nights but the last two have not gone so well so we are trying to get him back on a good routine before we try it again. Waking up the last two mornings at 5 and having the freedom to roam around pretty much sealed his fate for a few weeks.

I'm looking forward to getting back to work tomorrow and getting into some sort of routine. I think it will be good for all of us. Reed has not had the best time going back to school and Sunday school this morning was rough on him as well. I hate it because he used to be great about just walking in and telling us "Bye". Maybe some normalcy will do him some good.

Please continue to keep our little Gaines in your prayers. A huge prayer request was answered when we all made it to Montgomery safely but Gaines still has a ways to go. Please pray for his little lungs. Looking back it is amazing to me how far he has come. God is good.

Love to all,

Brittany

New Pictures

Gaines and Reed were visited by my family today. My parents brought Reed a "Hotwheels" battery operated Jeep. He loves it.

Gaines is still on nasal cannula. He is currently requiring 2 liters of flow and 50% oxygen. He gained 200 grams last night which is almost 7 ounces. Needless to say he will be getting extra doses of lasix today. Some of the 7 ounce weight gain is definitely fluid retention. He is breathing a little hard so they checked his blood gases and did a chest x-ray. Both the blood gases and the x-ray looked fine. They will continue to monitor the "hard breathing".

Below are a few pictures of Reed and his cousin Maddie in his Jeep and a few pictures of Gaines taken today.

Beau

Today was another busy day. Brittany and I spent the morning unpacking until her Grandparents arrived around 11:30. We then went to visit Gaines and let him see his Great Grandparents. The rest of the day was spent running errands and visits to the hospital.

Gaines is still on nasal cannula and has been for the past 36 hours. Even if this nasal cannula try doesn't "stick", he has improved since his last nasal cannula try of two weeks ago when he only tolerated the cannula for 24 hours. Gaines did get another heart echo today. I think the doctors here in Montgomery just want to confirm what was in the report from the doctors in DC.

Tomorrow Gaines will get a visit from my parents and he will meet his Aunt Kelly and Uncle Greg for the first time. He might even get to meet his cousin Maddie who was a NICU baby herself.

We should have some pictures to post tomorrow. Since Gaines is on cannula he doesn't have to wear his hat thus you can see most of his face. I know I am biased, but he is a cute little guy.

Beau

Still Holding Strong on Cannula

Just a quick one. I'm knee deep in clothes at the moment. I posted a longer post last night so scroll down if you haven't read it. Gaines is still on cannula this morning and his oxygen is between 35-40% on 2 liters. Everything else is great.

Love to all,

Brittany

Exhausted

This post is taking the last bit of energy that I have today. I'm worn out and so is poor Beau. I at least got about 2 hours of sleep last night...I think he got about 25 minutes on the plane. Today has been a really good day but we've been super busy. We have so much stuff to unpack, organize, laundry, etc. My goal today was to get Reed's new room finished and organized. It's close...I just need to find a big basket for his toys. I might tackle putting away my clothes tomorrow.

We also met one of Gaines' new doctors, several nurses and got acquainted with a new NICU today. So many things are similar but so many are different too. Just things like the way you wash your hands etc. Beau said today that it feels like we are starting over. I know what he means...we just have to adapt to our new surroundings, policies etc. Reed won't be able to visit Gaines here. He's not old enough. Good thing Reed was never super excited to visit him. I'm sure that he's going to get his fill of Gaines very soon.

Gaines is doing great today. They transported him on nasal cannula last night and since he did so well on it, the doctor here wants to see how long he can tolerate it. As of right now, he's on 35% oxygen with a flow of 2 liters. I don't exactly know how that compares to CPAP but I'm pretty sure he's not getting the same pressure that he was. We discussed keeping Gaines on CPAP with our doctor this morning and his reason for not using it is just about as strong as our old doctors reasons for using it. I'm too tired to go into all the specifics but it made sense to Beau and me at the time. Right now we feel like we'll give this new team a chance and see what happens the next few days. If things don't get better we'll press to get him back on CPAP. We'll see what happens. Keep in mind that if the cannula doesn't take, he'll be back on CPAP regardless.

There are only three other changes to his care right now. 1. He'll now be getting vitamin D to counteract some of the damage that the lasix can do to his bones. 2. They are trying his by mouth feedings without his feeding tube in. This morning he took 40 of his 60 ccs by mouth. That's a huge improvement. Tonight he only did about 20 but that's still great. I think he may have only done 20 one other time. 3. He is back in an isolet for now. He is still holding his temp fine but the doctor explained that it takes a lot of energy for a baby to do that and by keeping him from working so hard on that, his body can work on re-creating lung tissue.

I mentioned earlier how much stuff we have to do but there is also so much that we don't have to do. We have wonderful friends back home that took care of so many items on my to do list before I ever got back. The flowers in my front pots were replaced, my house was clean with linens washed, cars washed and vacuumed, grass cut, furniture moved, Gaines (hand me down...poor Gaines) clothes washed and in his closet...and so, so much more. There was even a thermostat replaced...I haven't figured out exactly why yet but how nice not to have to worry about fixing something right away. Also, our Sunday School class stocked our kitchen with tons of food. Our fridge, freezer and pantry are overflowing with food. I won't have to grocery shop for a while. They even re-stocked the basics in my fridge that had to be thrown away. We are so incredibly blessed to have such a wonderful support system here. Thank you all...from the bottom of our hearts.

A few notes about Reed. He slept in his big boy bed last night and did great. However, he was not super impressed with going back to school. He cried and it broke my heart. He really does love school. Right now Jack is in Reed's bed curled up. I won't let him stay there all night but I thought it was cute.

I better run for now. This was much longer than I anticipated. My grandparents are coming to visit tomorrow, Beau's family on Saturday and more of my family on Sunday so we are going to have a busy couple of days. Its so nice for Gaines to meet is big family in Alabama!

Thank you all so much for continuing to keep up with and pray for us. We are truly, truly humbled by you support.

Love to all,

Brittany

We're Home

The UAB Critical Care Transfer Team arrived at GWUH at 2:30 AM this morning to pick up Gaines and me. We left GWUH in an ambulance around 3:00 AM. The ambulance took us to Baltimore where we boarded a jet bound for home. The jet took off around 3:30 and we landed in Montgomery at 4:45 AM Central.

Gaines did excellent during the transfer. He was able to transfer on nasal canula (5 liters at 35% oxygen). The Transfer Team decided nasal canula was best because their CPAP seemed to irritate him. He is now safely in the NICU in Montgomery. Oh yeah, we also had to change Montgomery NICU's. Apparently, Baptist South was too full so he was transferred to the Baptist East NICU.

Below are a few pictures of the transfer. We will update more later. We are exhausted. Thank you all for your prayers.

Beau

Another change of plans...

The transfer will now begin at 11:40 PM Eastern tonight. Hopefully there wwill be no more changes.

Change of Plans

Apparently, someone in Alabama had an emergency C-section and the baby needed the critical care jet. Thus, Gaines' transfer will tentatively begin at 2:00 AM tomorrow morning rather than 8:00 PM tonight. I will continue to update as I know more.

Beau

Brittany is Home

I just spoke with Brittany and she and Reed have made it safely home to Montgomery. They were about an hour late getting in because their connecting flight in Atlanta was delayed due to weather. They actually sat on the runway for about an hour. I'm sure Reed entertained everyone on the plane.

As for now (its 4:00 PM in DC), Gaines' transfer is still scheduled. The transfer would be postponed only if Gaines had a setback or the transfer team had an emergency transfer. Gaines and I should be leaving DC in about 4-5 hours.

Beau

Bittersweet Goodbyes...

Well, today is the day. We have been in DC for 113 days and this part of our journey ends today. We have not been in our home since March 18th.

Brittany woke up early this morning and made one last visit to GWUH. She arrived during shift change and was able to say goodbye to many of the day shift and night shift nurses. She shed a few tears as she walked out of the hospital for the last time. I'm sure she was a little sad, a little excited, and a little scared. Brittany then met Reed and me at Reagan International Airport. Brittany and Reed's flight left at 10:00 AM and they should be back in Montgomery by early afternoon.

Gaines and I will not leave until tonight. Apparently, the transfer team likes to do these transfers at night. The transfer team should arrive at GWUH between 8 and 9 PM. An ambulance will take all of us to an airport where we will board a plane headed to Montgomery. Once the plane lands, another ambulance will take us to Baptist South. We have been told the whole process should take between 6-8 hours so we should be in Montgomery between 2:00 and 4:00 AM tomorrow morning.

Our doctors here at GWUH believe Gaines should be transferred on CPAP. They see no reason to re-intubate him. However, once the transfer team picks Gaines up it is their decision to re-intubate him or not. Basically, the transfer team is responsible for Gaines so they decide what they think is the safest possible transfer for him.

On a side note, someone commented earlier that a friend of theirs was admitted to GWUH just a few days ago with preterm complications and she was only 25 weeks pregnant. When Brittany and I read this comment, we realized there was one thing left that God wanted us to do in DC. Brittany went and visited this stranger. When Brittany was on bed rest, so many people knocked on our door and said "you don't know me, but...". It was if things had come full circle. Brittany knocked on this stranger's hospital room door and said "you don't know me, but...". Brittany gave her our blog address, gave her a quick synopsis of our journey, and encouraged her to stay positive. As she left this stranger's room, she realized it was the exact same room she had been in while on bed rest for almost 6 weeks.

We'll keep everyone updated throughout the next 24 hours. Please say a special prayer tonight around 7 PM Central. This will be about the time Gaines transfer begins. Please pray for a safe and uneventful flight home.

Beau

Travel Update

Its not definite yet but it looks like Gaines could be going home tomorrow. Our doctors here have talked with the Montgomery doctors and Baptist South is ready for him. Our insurance contact has spoken with the transfer team and right now they don't have anything on their books so it could be tomorrow. She reminded me that since Gaines is not an emergency, should an emergency come up, he'd be bumped to a later date this week. I'm just so excited that my baby is going home!

So far the plan is for Reed and me to fly home tomorrow and for Beau to fly with Gaines (I think I'd be a nervous wreck). Here's how it will work: an ambulance will pick up Gaines from GWUH and take him to the airport. From there a medical jet will take him to a Montgomery airport where another ambulance will be waiting to take him to the hospital. All of this should take about 6-8 hours. I am SO excited to get Gaines home but also SO nervous about his transfer. Please pray for a successful and safe transfer and comfort for my nerves.

While I am so excited about all of this I'm also a little sad. We have come to really rely on so many people here. The doctors and nurses at GWUH have all been incredible and I will never be able to repay them for the care they have given Gaines and me. They have truly become our friends and family in D.C. I will also be sad to leave the friends we have made outside the hospital. I won't call you all by name but you all know who you are and we will be forever grateful to you for the support you've provided us throughout this long journey.

I'm tearing up writing this!

While this journey is still far from over (Gaines probably has another good month at least in the hospital), I feel like a huge chapter is closing. It's a little bittersweet. We aren't taking a healthy baby home like I'd envisioned, but I know that God is going to be with us back in Alabama and will carry us through the rest of this. God is SO good. I am truly humbled by His grace.

I need to run...TONS to do. We have lots of loose ends that we need to tie up today so I won't be able to respond to all of my well wishing emails, texts, etc. but please know that I'm getting them and that I'm so thankful for them all. And yes...we'll keep the blog up at least until Gaines gets home.

Love to all,

Brittany

Going Home!

We just found out about an hour ago that Gaines' transfer was approved! We are beyond excited. We don't know when exactly but it will probably be this week. He'll be at Baptist South as long as they have room for him. Baptist South is directly across the street from my office and has a level 3 NICU (same as GW). This is such an answered prayer and proof for any doubters that God DOES hear and answer prayers. I'll post more info as we know more. Probably sometime tomorrow.

Love to all!

Brittany

Monday Update...No Big News

I might actually be able to write a post and not be rushed through it. I swear it is so hard to get anytime on this computer lately. Side note...I'd like a count on how many times I've used the phrase "so hard" in this blog since March 18. I hope its as many times as "so blessed" but I doubt it. I've said it before but its not easy to remember all the ways God has provided for us when the one thing I keep asking for hasn't happened yet.

A few days ago I was all set to write a blog about how I've been actually thankful for this situation and how much I've learned from it, et cetera and so on. That post never got written because the next day is when Gaines started having trouble with his oxygen again. Not so much trouble but we lost the 25% and headed back up to 30%. When you've waited so long for 25, going back to 30 is devastating. It's enough to really shake you up and make you question God. Why won't He just fix him, is He really listening when I pray, is He really there? Thankfully I let those questions come in and sent them right back out.

So many things have happened so perfectly that I know He's there. I don't think I've handled this situation better than anyone else would so don't think I'm patting myself on the back...I'm not. BUT, I have handled it and I'm still sane (I think), and I still have a husband who loves me and I still have two beautiful children and I still have lots of family and friends back home supporting me. I don't think any of that would be the case if God wasn't there directing this whole thing. If I was doing this on my own I surely would have gone crazy, pushed Beau away with my craziness, I might not have both my children and people back home would have said "how sad" and gone about their business. I'm quite sure that paragraph isn't grammatically correct but by MLA handbook husband isn't here right now so I'm letting it go.

I really don't think I had a point to all of that rambling...just something I felt like writing.

Gaines is still doing about the same. He's still hanging around 30%. Every so often the nurse will get him just right and he'll hang out at 27% for a while but really he's about 30%. They have decided to give him an extra dose of lasix today which I've been thinking he needed the last few days. He's had a good bit of weight gain lately (could be a sign of him retaining fluid) and with his oxygen up it just made sense to me...with all of my medical training. I think they were trying to give him every opportunity to not need it but finally decided to try it today. I hope that it helps and that his oxygen requirement comes down.

As far as going home to Alabama is concerned, we still don't know anything. I spoke with our insurance company this morning and they still need some info from GWUH before they have a decision. Please pray that this works out. I'm so afraid the group administrator is not going to let it go through and I will be devastated.

I need to run...Reed's up...so much for not being rushed.

Love to all,

Brittany

Long few days...

Hello all. The last few days have been pretty trying for me. I am so emotionally invested in Gaines progress (or lack of) that these few days since the cannula experiment have been kind of tough for me to swallow. Right now his oxygen is hanging around 30% but right this minute its at 32%. I hate it. I'm just so confused as to why he's not back to 25%. I thought he'd be back there by now. I haven't gotten to talk to the doctor today but the nurse said that he wasn't concerned because overall, he's still progressing.

Beau says that I'm starting to look at things day to day again and that I've got to stop but I can't. Next week I won't even be here so honestly, I'm looking at things minute to minute now. My mom was here this weekend and I think that was God's plan. He knew I'd need a distraction these few days to keep me sane.

I hope to know something from insurance on Monday...Tuesday at the latest about transferring home. Little pieces are starting to slowly come together but that's the biggest one right now. If I can get that worked out before I leave I'll be okay. Right now I think I'd be happy if Gaines was home within a week of me leaving. Right now I feel like a week isn't long enough to make a transfer happen but two weeks should be...if insurance decides to help us out that is.

This has been such a long road and we are so desperate to get back home. I'm okay with Gaines still being in a hospital as long as we are back home. While we are by no means at the end, I hope (with insurance cooperation) that we are getting ready to start a new phase of this journey...one that puts us back in Alabama.

Love to all,

Brittany

Quick Update

Gaines has had a pretty good day. Last night his oxygen was as low as 25% and today it has been between 26% and 30%. He has gained a good bit of weight the past couple of days, currently weighing 5 pounds 10 ounces. Brittany and I think some of the recent weight gain could be due to fluid retention in his lungs, which would explaining the higher oxygen requirement. However, the doctors are monitoring this and believe he might just be gaining weight since he is almost "full term".

We should have more time tomorrow to give more updates. Got to run, Reed is trying to turn off the laptop.

Beau

Day 70 in the NICU

Today is day 70 in the NICU and Gaines will be 10 weeks old tomorrow. I try not to count the days but its impossible not to. As I see it, as each day passes we are one day closer to going home.

Brittany's mom is visiting us this weekend and held Gaines today for the first time. She also brought Reed a stuffed animal. Its a little red crab that has been named Herman. As we left the hospital this afternoon and walked Brittany's mom to her hotel, Reed sat in his stroller and talked to "Herman" the whole way. It was pretty funny.

Gaines has done okay today. His oxygen requirement on CPAP was at 30% this morning and decreased to 28% by this afternoon. We are hopeful that his oxygen will get back down to 25% like it was before "the nasal cannula experiment" (as I like to refer to it). They did try him on nasal cannula again today during a bottle feeding and he didn't do well. Apparently he just needs a little more time for his lungs to recover. While it was great that he made it 24 hours on nasal cannula a couple of days ago, it probably allowed "pockets" of his lungs to collapse. Since he is back on CPAP those "pockets" of collapsed lung should resolve themselves. As they resolve themselves his oxygen requirement should continue to decrease.

Basically, from "the nasal cannula experiment" we learned that he has made great progress over the last two weeks. It was only two weeks ago that he didn't last five minutes on 5 liters of the nasal cannula. Just a few days ago he lasted 24 hours on only 2 liters. This is very important because a transfer home would possibly require him to be re-intubated to the ventilator unless he can sustain the nasal cannula. Even though Brittany and I really want him home, we and the doctors feel that re-intubating him on to the ventilator would be a step backwards. Oh, and by the way, we should have an answer from our insurance company sometime early next week regarding a possible transfer.

At this point, Brittany and I feel that the possible transfer is in God's hands. So many pieces have to fall into place for the transfer to occur. We feel that God will put all the pieces in place if that is what is best for Gaines. If the transfer doesn't occur, we feel like that is God telling us that our journey in DC is not quite over. Either way we should know something soon.

Beau

A Step Back

We've taken a little step back today. Gaines held strong on the cannula all night but he started having trouble with it about 11:00 this morning so they put him back on the CPAP. I'd be lying if I said I wasn't discouraged but at least I'm not devastated. I let myself do what I always try not to do...get my hopes up. I let my mind wander to the possibility of Gaines getting to go home (not just a hospital) with us. I was starting to think that it might really be possible for us to go home as a family. At least it was only a single tear today and not a major meltdown.

The good news is that after talking to the doctor today, I think we have a goal that we are working towards. All along we've been sort of heading in the same direction but today I feel like we are starting to make big efforts to get Gaines to a hospital back home around the time that I leave. Our doctor feels like its in Gaines' best interest to be in Alabama with us. Now we just have to convince the insurance company of this and get Gaines stable enough on cannula to get him home. Once we get there we'll really press our doctors there to continue with the CPAP philosophy.

Gaines' oxygen is back up to 30% but the doctor is not concerned. He thinks that he'll be back down around 25-26% by tomorrow. Something about collapsed alveoli that will take a while to reopen. Please continue to pray for his lungs to improve and wisdom and peace for Beau and me as we start making big decisions about getting our family home.

The doctor has encouraged me to keep in mind that Gaines has made so much progress in the last 10-14 days. Although today seems to be a setback he is still headed in the right direction...just a little slower than any of us would like.

I'm attaching a few pictures of Gaines taken yesterday while he was on nasal cannula.

Love to all,

Brittany