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

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

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

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.

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.

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

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

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

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

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

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

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

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.

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

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

Not Much To Say

All is still well with Gaines. His oxygen is between 35-40%. I'll post more later this afternoon.

Brittany

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

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