Sunday, May 31, 2009

Sweet Tea!

A warning to all...this is going to be a really random post.

Brittany and I went to church tonight at Grace DC. This is a Presbyterian church in downtown DC. We were introduced to this church by the "community group" that adopted us and has been bringing us meals. This is the second Sunday we have attended.

Anyway, Grace DC's services are at 5:00 PM on Sunday evening. After church last week, we decided to find a restaurant near the church. I guess we sort of started a tradition because we did the same thing this week. As we left the church tonight, we walked around the block and found a McDonald's. We made our way across the street and were about to walk in when we noticed it was packed. Since we already had our hearts set on a hamburger, we decided to splurge and go to Fudruckers. Long story short, Fudruckers had sweet tea! I mean real sweet tea.

We have been in DC now for more than two months and have gone to many restaurants that serve unsweet tea, green tea, cherry black tea, etc. Some even claimed they served sweet tea...but it was not sweet tea. Well tonight we felt like we were back home in Alabama...I drank 4 glasses of sweet tea. It is amazing how something so little can excite me so much.

On a different note, Gaines' oxygen requirements today were between 42% and 60%. He is currently up to 40 cc's of milk at each feeding and weighs 4 pounds 7 ounces. Please pray that he gets his oxygen requirements under control.

Beau

More Of The Same

Everything is still about the same. His oxygen is still around 45-50%. Please pray that the lasiks work. He's still gaining weight which is great but we REALLY want to get that oxygen down. I'll post more later. Things to do...

Brittany

Saturday, May 30, 2009

Good Echo Report

We got the heart echo done today and it seems to be a fairly good report. First of all, Gaines' PDA is 100% closed so that's good news.

Secondly, his VSDs are still there and they are contributing to the fluid in his lungs. Technically this is considered heart failure but the cardiologist prefers to refer to it as heart success. Basically his heart is doing exactly what it should...the VSDs are just making things a little complicated. To treat this, the cardiologist wants to give him the lasiks everyday. Hopefully this will help his lungs and reduce his oxygen requirement.

Since the VSDs are muscular holes, as his heart grows, the holes will become relatively smaller and eventually close (from what I understand anyway).

All in all a good report. Hopefully this is the answer we've been looking for. We haven't been able to talk to the NICU doctors about what this means over all but as soon as we do I'll report back.

Love to all,

Brittany

Sigh of Relief

Just wanted to let you all know that when I called to check on Gaines this morning I found out that he's been at 35-37% oxygen for most of the night. Thank you God and thank you all for praying for him. Please keep it up. Hopefully it will come down even more!

Love to all,

Brittany

Friday, May 29, 2009

Quick Update

Just wanted to let you all know that they did not do Gaines' heart echo today. The cardiologist wanted a specific tech to do it and she's not working until tomorrow...so I guess we'll wait. After looking at the EKG and x-ray that was done this morning, the NICU doctors don't see anything to lead them to believe that there is a heart issue but they will still need to do the echo to rule it out. Gaines' labs don't seem to point to any sort of infection either. Right now the doctors think that it is probably just his lungs. The x-ray showed several damaged areas. He was given the lasiks this afternoon and has started to lose some of the fluid but his oxygen is still hanging out around 50%.

Please continue to pray for Gaines' little body. Please pray that the lasiks keep working and he is able to reduce his oxygen requirement. Having his oxygen go in the wrong direction is a very scary thing for me. I hope this is not as major as his first hurdles, but today felt like one of the early days to me. Knowing that something is not right but not knowing what it is or how to fix it.

Love to all,

Brittany

Not The Best Report

Gaines needs your prayers this morning. When we arrived at the hospital this morning, his oxygen was up to 50%. For those who don't know how this works, I'll offer a brief explanation. Gaines has a monitor on his foot that measures how well his body is oxygenating (remember, your blood supplies oxygen to the rest of your body)...that number is his saturation level or sat as we call it. If his sats are in the upper 90s, his nurse will reduce the amount of oxygen he's getting, low 90s to high 80s and they leave him alone. Anything below about 84 and they increase the oxygen he gets. So, since his oxygen is so increased, we know that he's not oxygenating well.

I spoke with one of the attending doctors today about this. Basically he thinks that the increased oxygen is due to fluid in (or on...can't remember) his lungs. What we don't know is how or why its there. It could just be due to being premature or it could be the VSDs (holes in his heart) becoming a problem. They have already done an EKG this morning and from the doctors assessment of that and of Gaines, I don't think they are convinced that this is the problem. They are going to do another heart echo this afternoon that should tell them more. From what I understand, the treatment either way will be to give him lasiks (a diuretic) to get the fluid out. Hopefully just one dose will work, but it could be that he has to have these regularly.

When I asked about possible heart surgery if the VSDs are the problem, the doctor told me that the lasiks would be the treatment for now and if a surgery was necessary, it would be about 3 months down the road. I'm pretty sure that this could be something that was done back home after he was released but I don't know for sure.

Please pray that the VSDs are not a problem and that a dose of the lasiks solves the problem. Pray that the fluid is just a byproduct of Gaines' prematurity. Continue to pray for his overall health and for peace for Beau and me as we continue on this journey.

Gaines is 5 weeks old today.

Love to all,

Brittany

Thursday, May 28, 2009

Thursday Update and CPAP vs Nasal Cannula

Hello all. We are having a pretty good day here so far. Gaines did well last night. His oxygen was at 35% most of the night but he did get down to 33% for a little while. Today he's still doing pretty well. He was very irritable this morning so he required a little more oxygen but not more than about 40%.

I'm not sure what got into him this morning but he was pretty fussy. His nurse (and I) thought it might be his stomach hurting or something so she repositioned him with some new pillow and he's settled down for now. He's hanging out around 36% right now. To me that seems like progress. Hopefully he'll hold on there for a little while and then start to bring it back down some. They have upped his feedings to 38 ccs every three hours and he now weighs 4 lbs 4 oz. A growing boy. Yesterday when I held him he was so alert and seemed much more like a "real baby"...and by than I mean a term newborn that follows all the rules.

Several people have asked about or mentioned the possibility of Gaines going home on oxygen. I discussed this with the doctor a day or two ago. He actually brought it up since he knows we are so far from home. Basically this is the deal: Gaines is on CPAP because the doctors here feel that this is a far better method for getting him the help he needs breathing than the ventilator or nasal cannula (a little nose piece for those that are not familiar). The CPAP actually helps his lung tissue develop and helps create new alveoli (I think) while the nasal cannula does not do this. The CPAP keeps his lung sacs (alveoli) open while the nasal cannula does not. From what I understand, the cannula just supplies oxygen at various pressures (liter, half liter etc.) The down side to this is that the baby is getting more oxygen than what he needs. I won't be able to repeat the chemistry lesson I got on this but basically, too much oxygen creates free radicals in the body and they can be very damaging. I've known all along that too much oxygen is not a good thing, I just never knew why. This hospital rarely sends a baby home on oxygen for that reason. They generally use the CPAP to supply oxygen and eventually wean them from it. Once they get down to 21% oxygen (or room air) they do not immediately take them off of the CPAP. They have to be weaned from that as well. I probably just butchered all of that.

The bottom line is that if Gaines continues to need oxygen, it is better for him to be on the CPAP than nasal cannula. While he could go home (at some point) on a nasal cannula, his lungs are much better off on CPAP (which he cannot go home on). Obviously, if Gaines looks like he'll need long term help breathing that is an option we would have to consider but for now, the doctors feel like the CPAP is the best thing for him...and we agree. I realize that this is probably different from other hospitals and other preemie parents experiences but Beau and I both feel that this hospital is top notch and we fully trust our doctors here. We also realize that each baby is different and what is best for Gaines may be different from what was best for other preemies.

Everything else is going well here. If the weather holds out we'll probably take Reed to a park this afternoon and I'm considering going on a run. Stay tuned to see if that actually happens.

Please continue to keep Gaines in your prayers.

Oh...and yes I think that Gaines looks a lot like Reed when he was little. I've thought that since I first saw him. I'll try and get some comparison pictures on here soon.

Love to all,

Brittany

Wednesday, May 27, 2009

Pictures

We went to visit Gaines this morning and his oxygen was back at 40%. Apparently it had been at 40% throughout the night. We did discover that he requires almost 5% less oxygen when he is on his tummy rather than his back. He was on his tummy when we left this morning and his oxygen was down to 38%. He is still tolerating his feeds (36 cc's) very well, he had no residuals all day yesterday. He also continues to hold his temperature. He is now up to 4 pounds 3 ounces (he has gained one pound since he was born).

Last Sunday we were able to take Reed to his first Major League Baseball game. We went to Nationals Park to see the Washington Nationals play the Baltimore Orioles. One of my friends from work provided us with the tickets. We had a great time.

Below are a few pictures from the baseball game and a few new pictures of Gaines (taken this morning). The pictures of Gaines are taken while his cares were being done so he doesn't have his CPAP in.

Tuesday, May 26, 2009

34 Weeks

I just got back from visiting Gaines this morning. I was SO relieved when I got there to find out that his oxygen was down to 33%. It had been at 40% the last few days. Hopefully it will continue to come down.

I spoke with one of the attending doctors today about Gaines and he feels considering his prematurity and his underdeveloped lungs he's doing ok. They'd obviously like him to be doing better but for now he's doing as well as they expect. We discussed the benefits of CPAP over the nasal cannula and while I cannot explain it again now, I understood it and agree that the CPAP is the best option for Gaines.

Last night I showed up at just the right time and was able to help give Gaines a bath. I love being there at bath time because I can actually see his whole face. They have to take the CPAP and his hat off so I'm able to see what he really looks like. I tell you...he's a cutie. I also helped weigh him and he's up to 4 lbs 1 oz.

Gaines is 34 weeks today so I'm hoping that its the beginning of a week of progress. Please keep Gaines and our family in your prayers. They are working.

Love to all,

Brittany

Monday, May 25, 2009

Home Sick

I wouldn't say that Gaines is having a bad day today but I certainly don't think it's one of his best. This oxygen business is still really weighing on my heart. I feel silly for being a little down about Gaines' lack of progress after my last two posts about how far he has come. He has come a long way and I am SO thankful for that but he still has a long way to go. His oxygen requirement has crept back up again and is around 40%. It looks like the nose piece issue that his nurse told me about isn't the problem as they found a way to fix it and it didn't really help. Also, he got a blood transfusion yesterday that we hoped would help with the oxygen and it hasn't so I'm a little discouraged. I just want my baby to be well. I want to take him home and be a family with him. My heart aches for this as I am just so tired.

I'm tired of walking in that hospital every day...several times a day. I'm tired of sitting in a hospital by my baby's bed and watching numbers and hoping they get better. I'm tired of walking to his bed so hopeful that they will be improving just to be let down. I want so badly to be in my home with Beau, my two boys and Jack. I want to cook dinner for my family, give my babies baths and just be normal. I'm sorry...I've just been homesick for several days now but I've been trying to focus on the positive and honestly I'm just tired of that too. I know that I have so much to be thankful for...I mean I really do...Like I said, I just want my baby to be well.

I had a long talk with the doctor last night about several things. I asked what would be done next if his oxygen requirement kept going up. He said that they'd probably repeat the heart echo at some point to see if that would give them any insight. They aren't doing it right now because he and the attending doctors all believe that Gaines just has bad lungs (my words not theirs...I have to sort of summarize and repeat back to them what I think they've told me to be sure I understand). By that I mean that he not only has the problems associated with being born at 29 weeks, but he also has underdeveloped lungs because of my water breaking so early. I pray that there are no outlying issues and that his lungs start improving these next two weeks.

If you remember, if he still needs oxygen at 36 weeks, he will be diagnosed with Chronic Lung Disease. This is something that he will eventually grow out of but will leave him with decreased lung capacity. I just really want to avoid this if at all possible. PLEASE, pray with me for Gaines' lungs and everything else.

He's still growing...he gained 65 grams last night and is now officially 4 lbs. Such a big gain is probably due to him getting blood yesterday but I think part of it is actual weight.

I guess that's about it for now. Please continue to keep Gaines and our family in your prayers.

Love to all,

Brittany

Sunday, May 24, 2009

Sunday Morning Surprise

We went to visit Gaines this morning and got a welcome surprise...he has been moved out of his isolet and into an open bed! Originally we were told he would not go to an open bed until he was able to hold his own temperature and he weighed 1800 grams. He is currently 1785 grams (3 pounds 15 ounces) but is holding his temperature very well. Typically the nurses will not turn the temperature in the isolet below a setting of 28. The past two days Gaines' isolet temperature setting was at 27. It was because of his ability to hold his temperature that the doctors decided to go ahead and move him to an open bed. Hopefully he will tolerate the new noises and environment. Other than this big news, everything else seems to be the same.

This afternoon, Brittany and I are taking Reed to a Washington Nationals baseball game. This will be his first major league game. I'm sure we will have some great pictures to share. In the mean time, below are a few new pictures of Gaines. One picture is from the day after he was born. The other pictures are from today, his one month birthday. Look at the difference in the number of machines.
The picture below was taken the day after Gaines was born.
The picture below was taken today...one month later.
The picture below is Gaines in his new open bed.

Yesterday we stopped at a FedEx & Reed wanted to type on the computer.

Saturday, May 23, 2009

Long Day

Sorry for the late post but we've had a loooong day. Nothing to do with Gaines...he's fine. I'll get to him later. We spent the day with my parents doing some sight seeing. There was a lot of walking and it was really hot. I'm actually pretty sunburned. I guess I haven't been outside this much in a long time. It was really nice to spend some time with my parents outside of a hospital room. They have been so wonderful (as have Beau's parents) throughout this whole thing. Not only did our parents take on a child to raise for several weeks but they worked together and made sure that he was here to see us every other weekend. For that we are eternally grateful.

Gaines is having an ok day today. His oxygen hasn't been the greatest but his nurse today (who is awesome by the way) reminded us that even though he's four weeks old now, he still shouldn't be here. Ideally, I'd be pregnant for six more weeks. She really felt like he was doing great considering his circumstances. She also told us that she thought the increased oxygen today was a mechanical issue...meaning that his nose piece probably needed to be replaced. They can't replace it until Monday because they ran out and they won't get more until Monday.

One other thing that she mentioned was that we could probably expect Gaines to start making some improvements around the 34-35 week mark. I'm excited about this as Tuesday will be 34. She said it really seems that things start to come together around then. She also told us not to be surprised if we come in this week and he's in an open crib. He's only 40 grams away from that 1800 gram (4 lbs) mark. The only hold back would be if the extra stimulation (more light and more noise) caused him to desat or drop his heart rate. This is pretty possible as he doesn't seem ready yet for the extra stimulation involved in the kangaroo care. It didn't go so well last night but we'll give him some time and try again.

I think that's about it for the daily report. I hope you all are having a great weekend!

Love to all,

Brittany

Friday, May 22, 2009

Four Weeks Old

I know I say this at every milestone but I cannot believe we've been living this NICU lifestyle for 4 weeks now. You all know that lately I've been really wanting Gaines to make some big progress but hitting this 4 week mark makes me look back and realize exactly how far he has come.

It was not so long ago that Gaines was on every machine they had to help him breathe...now he is only on the CPAP and within 10% of not needing oxygen at all. Four weeks ago we couldn't touch him...now we are able to hold him regularly. He was getting his blood gases checked every 3 hours...now he doesn't need them checked anymore. He was just a measly 3 lbs 2 oz and now he's a whopping 3 lbs 14 oz! Yep, he's only 2 ounces shy of the coveted 4 pound mark. Since Gaines doesn't seem to be ready to lose the oxygen just yet, I'm focusing on other things like his weight.

The last day or two I've really been able to appreciate how far he has actually come. I can remember his first day here and Beau and I being called to the NICU because they weren't sure he was going to pull through. I remember us sitting by his bedside helpless and crying yet praying feverishly for him. And now, here we are four weeks later with a pretty stable little guy that we are just having to be patient with. It's amazing how quickly you can forget how much you've already been blessed when you've set your sights on wanting something else.

Moving on...at yesterday's afternoon visit, Gaines' oxygen was up to 42%. I was shocked. The nurse told me that he had just slowly crept up all day. When I went back that night he was still at 38%. Lower, but much higher than he normally is. The nurse told me that she noticed that his feeding tube had slipped some so she replaced it and she thinks that was the reason for the increased oxygen.Thankfully, while I was there he came back down to about 30%. This morning he is still around 30% and everything else is still about the same.

We had a lot of fun at the park yesterday. There are some gorgeous rose beds around the park and I think Reed smelled everyone of the roses while we were there. My parents should be here in a couple of hours so we'll be spending the afternoon with them. I wonder if they will be able to notice any physical changes in Gaines. I see him everyday so it's hard to notice these extra ounces. I wonder if they will.

I guess that's really about it for now. It's lunchtime here and I'm hungry. I hope you all have a great Memorial Day Weekend.

Please keep Gaines in your prayers.

Love to all,

Brittany

Thursday, May 21, 2009

All Is Well

First of all, we just got done eating lunch and I am so thankful that I decided to take Reed's shirt off before the leftover spaghetti. I mean the child had spaghetti all over his face and stomach. Now, poor Beau is cleaning spaghetti off the floor. Good thing this carpet doesn't show stains. Anyway...sorry about that. It was just so funny. He's normally not so messy.

So, lets see...what's new with Gaines? Not much if you can believe that. He seems to just be spending another day getting stronger. Everything is pretty much the same. He is up to 3 lbs 12 oz...good news and seems to still be eating fairly well. Every so often he'll have a big residual (9 ccs this morning) but they seem to be only occasional. Most of the time he does pretty well. The decided a few days ago that if it is 9 ccs or less, they just give it back to him. It sounds pretty gross to me (remember this is undigested food that they suck out of his stomach) but they know what they are doing.

We tried the kangaroo care last night and it went ok but not great. His oxygen had to be turned up and he still didn't hold his sats very well. This morning I held him normally...all swaddled up...and he did much better. His oxygen stayed around 29% and he held his sats pretty well even though it was at the end of a feeding. He normally has to have a little bit of increased oxygen after he eats due to his reflux. For some reason I really feel like today will be a good day for him.

I did get to watch him get a bath last night. I don't think it was is favorite thing but it was nice for me to get to see him without his hat and CPAP on for a few minutes. Of course I forgot to take pictures of him without it but maybe I'll remember next time. He got to where his own clothes last night too. I know that he had to feel better being in his own pajamas. I know I preferred mine to the hospital gowns.

I think that's about it for now. Its a gorgeous day here so we are headed to a park after Reed's nap. I hope to pick up a little sun while I'm there.

Hope your all having a great day.

Love to all,

Brittany

Wednesday, May 20, 2009

Still Working On Patience

As you can probably tell from the title of this post, Gaines isn't really fired up about bringing his oxygen down. He was between 28-30% last night but this morning at our visit he was at 30%. Its so frustrating to me to not be able to just fix it myself and all these little pep talks I keep giving him don't really seem to inspire him. I've even been promising him all kinds of things like never having to cut the grass, take out the trash, empty the dishwasher etc and he's not really budging. I've decided that he takes after his namesake (my sister) in another way now. She does everything at a snail's pace and I guess Gaines will too.

I've been in great spirits the last 10 days or so (ever since Reed's been here) but I got kind of down about the oxygen business this morning. I guess I just don't know how to not focus on it and still be a concerned parent. The only way I could not pay attention to those numbers is to not visit and not call and check on him...but then what kind of mother would I be? I'm trying to just leave it in God's hands but my heart still sinks every time I find out that is oxygen hasn't come down. I prayed hard about it this morning and right now I have a peace that it will come down in its on time.

I didn't get to do the kangaroo care last night like I thought because Gaines had several "episodes" yesterday. He dropped his sats a couple of times and had a few instances of bradycardia. I believe he corrected them himself but the nurses didn't think getting him out would be the best thing. Its and awful lot of stress for such a little guy.

The good news is that Gaines gained 66 grams last night. I believe that puts him back about 3 lbs 11 oz. Maybe we'll finally see 3 lbs 12 oz tomorrow. Please pray for continued weight gain, for his brain bleed to clear up on its own and for healthy heart and lungs. Also, he has an eye exam today. Please pray that it goes well.

Love to all,

Brittany

Tuesday, May 19, 2009

Stable Day

Today has been another stable day for Gaines. His lowest oxygen point today has been 25% but he's hanging out around 30% now. I'm trying so hard not to pay attention to those numbers but its tough. He also lost a little more weight last night so he's back to around 3 lbs 9 oz.

The head doctor decided in rounds today that I should start something called kangaroo care with Gaines. Basically it's just holding him skin to skin so he can hear my heart beat and can smell me. It sounds a little weird to me as I am not the type of person that would have ever done something like that on my own. I've heard of it even with term newborns but never had an inclination to do it with Reed. But, if they think it will help Gaines...and according to the doctors it can help with all kinds of things including his oxygenation...I'll do it.

In other big news, we went to Target today. We needed diapers for Reed but it was nice to kind of look around and be out doing something normal. I tell you, I'm worn out from it though. Its kind of a big production to get there by metro...with a stroller. I can't wait until I can get in my car and drive myself wherever I need to go.

Please continue to keep Gaines and our family in your prayers. Specifically for his little lungs...still.

Love to all,

Brittany

Monday, May 18, 2009

Just Checking In

I'm almost afraid to put it in print, or whatever a blog is, but I think Gaines might be inching down on his oxygen. At tonight's visit he actually was at 25% when I left. By the time Beau got in there he was at 27% but they were feeding him. He needs more oxygen during his feeds because of the reflux. I really hope that tonight he's able to hang out around 25-26%.

His nurse tonight is one we haven't had before but I really liked her. She told me that she thinks his oxygen requirement has a lot to do with his reflux. She also mentioned that he's getting a bath tonight and that they generally require less oxygen after a bath because they are so relaxed. I've been more at peace about the oxygen the last day or two. I still really want it to decrease but I know deep down that it will eventually.

I was able to hold Gaines today at the afternoon visit. He wasn't swaddled up like normal and it was kind of like holding a wet cat at first. His little arms and legs were flailing about, he arched his back in a fit, he cried his little kitten cry and his fingernails were clawing at me...it was pretty funny. He quickly settled down and rested pretty well with me. I was able to hold him to my chest for the first time and I actually felt a little more comfortable holding him today. The first few times I was like a statue with him...I was so afraid to move. I didn't want to pull a cord out or make his monitors go off. Today I changed the way I was holding him a couple of times. Gently of course but it felt more natural today.

PS...in case Beau hasn't mentioned it, he held Gaines last week and probably will tomorrow. I just didn't want you all to think I was hogging him.

The doctors decided today that Gaines no longer needs his blood gases taken. They are discontinued unless he gives them a reason (like increased oxygen requirements, etc) to start back. Also, yesterday he had some pretty good sized residuals but today's were much better. The last one was only 1 cc. I'm guessing that yesterday's residuals played into the weight loss.

I think that's about all that I have to report for now. Please keep Gaines in your prayers...specifically his little lungs.

Oh...just a fun fact...I've been in DC for two months now. I left on March 18th.

Goodnight!

Brittany

Status Quo

Everything still seems to be about the same with Gaines. His oxygen was down a little this morning. It was at 27% when I called first this morning and at 28% at my visit but they have to bump it up at the end of his feedings. Hopefully when I go back this afternoon it will be at 27% or below.

If he's still doing well with his temperature (and he seems to be) I'll get to hold him today at 2:30. Our favorite nurse is working today so that is also good news. She is very good about encouraging us to hold him. We love to hold him but don't want to put too much stress on him. Also, it's a big job for the nurses to get him out so we always hate to ask.

His carbon dioxide was still in the 60s but headed in the right direction at 62 instead of 65-66. He lost a little weight last night...not much maybe just 15 grams. I believe that puts him at about 3 lbs 10 1/2 oz. I feel like 15 grams is so little that it could just be him being weighed at a different time or after a very wet diaper or something. Who knows? I can rationalize anything.

Let's see...what else? Reed is napping now. He got a desperately needed haircut this morning. I like it kind of shaggy but it was just a little long down the back of his neck for my taste. He looks good now...just a big change from the shaggy curls.

I better run for now. I need to do my chores while he's asleep so I can make it back to the hospital in time to hold Gaines.

Please keep his little lungs (and everything else) in your prayers.

Love to all,

Brittany

Sunday, May 17, 2009

A Chilly Sunday Afternoon

The weather in DC changes every day. Yesterday it was warm (80) with rain late in the day. Today it was drizzling rain this morning and the high is now ~60. Oh yeah, it is also very windy. Basically it is a chilly, overcast Sunday afternoon. The kind of weather that just makes you want to stay in bed. Thank goodness Reed is here or I think the weather would get the best of Brittany and me. Fortunately, the weather has not affected his mood in the least.

Brittany and I visited Gaines this morning and then again after lunch. He has regained the little bit of weight he had lost. He is now 3 pounds 11 ounces and his oxygen requirements are between 28-30%. He has plateaued on the amount of milk he can currently recieve at each feeding (34 cc's). As he grows, the amount of milk he can recieve will become more. Since he can not receive any more than 34 cc's of milk per feeding, the nurses are supplementing the milk with extra calories. Hopefully he will continue to gain weight.

Please continue to pray for Gaines...and maybe Brittany and me as we plan to keep Reed out of the weather and indoors the rest of the afternoon.

Beau

Saturday, May 16, 2009

More Of The Same

We've just gotten back and settled from visiting Gaines tonight. All of his stats are about the same. Carbon dioxide is still in the 60s (but his ph is still compensating for it), oxygen is still around 32% (that might be a smidge higher) and he seems to be doing well with his temperature. I believe that he is up to 32 ccs (just over one ounce) of food every three hours but at his last few feedings he's had about 5-6 ccs of residual (undigested food). The doctors don't seem concerned about it so I'm not going to be either.

Tonight they plan to remove his PIC line. This is the line that he has been fed his TPN (nutrients in addition to food) through. They no longer feel that he needs the TPN since he's tolerating his feedings so well. This is exciting because it is just one less thing for him to be hooked up to. He'll be given a round of antibiotics before they remove they remove the line. I believe its to avoid any possible infection.

Gaines had his eyes open more tonight than I've ever seen. It was so nice to see him looking around. He seemed pretty alert. I know that he can't really see me but I felt like he was looking right at me and thinking, what is going on mom?...get me out of here. I want to so badly.

I've really been having a hard time with this oxygen business. Not a hard time like I had the first week or two of this (side note...I think having Reed here has REALLY helped my spirits), but I just ache for him to need less oxygen. I want him to get off the oxygen and CPAP more than I can say. I try and just be thankful for the progress thus far but it's hard not to want to take the next step towards going home.

Even though Reed is here now, I still cannot wait to go home. There are so many things about home that I miss. According to my count, today is day 60 for me. I left home 60 days ago thinking I was going on a 3 night work trip. Funny how plans change. Actually its not funny...maybe it's interesting or something but its definitely not funny.

On a lighter note, my friend has been here today and I've so enjoyed her visit. We walked around Georgetown and I got to pretend like life was normal for a while. I finally let myself buy a couple of little things for Gaines. Just some footed sleepers that he'll need...nothing major but it was fun to look at tiny baby clothes.

Reed is still doing great. He has mastered telling us when he wants more of something. Someone has obviously taught him sign language for more. We have no idea where it came from but if he asks for "mo" and we don't accommodate him fast enough, he bangs his fists together at us, like maybe you'll understand this. The things he does these days are just amazing.

I'll go for now. Please continue to keep Gaines in your prayers. He is such a precious child and a huge blessing to us. I can't even begin to tell you how much we already love him.

Love to all,

Brittany

Not Much...

Not much to report this morning. Gaines is still doing about the same. His oxygen is still hanging out around 30%. Please pray that this comes down some today and that Gaines continues to get stronger. A little weight gain today would be nice as well.

I was serious about not much to report. Maybe this afternoon I'll be able to report decreased oxygen...

Love to all,

Brittany

Friday, May 15, 2009

Friday Night

So Friday has come and gone. It's hard to believe that we've been doing this for 21 days now. Gaines has had another stable day. I'm so thankful for that but deep down in my heart, I'm ready for more progress. I so badly want him to be able to bring his oxygen requirement down. He's got to get to 21% (room air) before they can try and wean him from the CPAP. Please keep that specifically in your prayers.

I've learned a lot of life lessons through out this journey but I think the one God is trying to teach me now is patience. It is just so hard not to want this for Gaines. The sooner he gets off CPAP the sooner we get to go home. I spoke with one of his doctors about the oxygen today. He didn't seem terribly concerned. Obviously they'd rather him be off the oxygen as its not good for him, but as long as he is off by 36 weeks they are ok with it. If he's still on at 36 weeks he'll be diagnosed with Chronic Lung Disease. It's something that wouldn't affect his day to day life but he'd get tired easier with things that required a lot of energy. So, for this reason and just because I don't want to still be here in 4 weeks, I pray that his oxygen starts to come down. He's been between 28-30% most of the day today. I pray that tomorrow he hangs out from 26-28% (or less!). See what I mean about the patience?

This has been a really good week having Reed around. We have truly, truly loved having him here. It has actually worked out pretty well. I was originally worried that we'd spend less time with Gaines but I think that we are actually spending more with him. We have to take turns but there are times when just one of us goes to the hospital and we get a good long visit with him. We've held him a couple of times this week too.

People seem to wonder what we do every day. Each day we both visit Gaines three times. We wake up, get dressed and head to the hospital first thing. We generally eat lunch at "home" and let Reed take a nap. We go back for an afternoon visit and then do some sort of fun activity with Reed. We've found a couple of parks nearby and I even ventured out to the zoo this week. That's the farthest I've been from the hospital in 8 weeks. After dinner we visit Gaines again. As soon as we get home Reed heads to bed. Right now he's sleeping on an air mattress (thanks Brian and Rebecca!) and he's doing great on it. We are able to tell him that it's time for bed and he just gets in and stays. This is big because he's been in a crib until now. Hopefully it will make the adjustment to the big boy bed easier.

I think that's about it for now. One of my good friends is coming to visit tomorrow and I can't wait. I don't know what we'll do but I think it will feel so normal to have her around.

Please continue to pray for Gaines. I mentioned his lungs earlier but also please pray for his brain bleed to clear up, a healthy heart, weight gain and for him to just keep getting stronger. Oh...and a little patience for me might be nice.

Love to all,

Brittany

3 weeks old

Gaines is 3 weeks old today. Brittany and I visited him this morning and everything is about the same. His CO2 level in his blood is high again but his PH levels are compensating so the doctors are okay with the CO2 level. His oxygen is hanging around 28-30%. He did lose 35 grams last night which puts his weight at 3 pounds 9.5 ounces. The nurses actually had to take his little shirt off because he was too warm last night (he is doing a good job holding his own temperature). I think he is trying to get better because Reed is here (sibling rivalry).

Brittany and I just got back from taking Reed to lunch. It is interesting to me to think about how much we agonized over Reed staying here in DC with us. We knew we wanted him to stay, but we wanted to do what was best for him. At the last minute on Monday morning we decided to keep him here in DC (literally the last minute, my parents were on their way to pick him up to go to the airport). I cannot explain the change in Brittany and me since Reed has been here. God knew we needed him and he needed us. We are a family again and it has been wonderful. Reed hasn't been perfect the whole time he has been here, but it is amazing how much you can miss those temper tantrums.

Please continue to pray for Gaines health, specifically his lungs.

Beau

Thursday, May 14, 2009

Thursday Update

Gaines is having another good day. He weighed 3 lbs 11 ounces this morning. I think that sounds great but the doctors think it might be that he's just retaining fluid so they are going to give him a diuretic to see if it's actual weight gain or fluid. I hope that its actual weight gain. He's eating well so today they stopped the TPN (nutrients) he's getting. If he tolerates his feedings for the next few days they will take out his PIC line. This would be wonderful. It would be one less tube going into his little body.

He's also doing well on holding his tempeture. He's still getting a little help from the isolet but they are weaning it. Hopefully, he'll master that soon and the weight gain will keep going up and he'll get an open bed. It would be such a milestone for him.

They did decide today that he needed a blood transfusion because he's anemic (normal for a preemie). I'm not too worried about it. The nurse did tell me that sometimes the extra blood gives them the boost they need to bring their oxygen requirement down. Gaines is still hanging around 30%. I REALLY hope it helps Gaines. I so badly want him to get off the CPAP. It would just be so wonderful for him to not have that on his face anymore. It's always so hard to see his face because of it. Plus it would mean that my baby is breathing on his own.

Oh, one other thing...they have determined that Gaines has reflux. It doesn't sound like a big deal but it can cause preemies to drop their heart rate and sat level. Right now Gaines is on medicine for it. Please pray that it gets better.

All in all a pretty good day so far. Please pray that this continues and that this blood transfusion helps with the oxygen.

Our internet here is kind of touch and go at times so I'm behind on returning my emails...please bear with me if you've sent me one in the last few days and I haven't responded. I'm trying.

Love to all,

Brittany

Wednesday, May 13, 2009

Gaines Report

Gaines is having another good day so far. I was shocked this morning to find out that he was up to 3 lbs 9.4 oz. Awesome news. I hope that he's up to 4 lbs by the end of the week. That would be one thing we could check off the list.

Also, they've already done his head sonogram. The brain bleed has not cleared up yet but according to the doctor, they didn't really expect it to in a week. They were more just looking to see if it had spread. He didn't have the formal report yet but from the preliminary report it didn't look like it had. More good news.

Gaines' blood gases continue to be in the normal range. His oxygen however seems to be creeping up some. He's still hanging around 28-30% (he was at 24% Monday morning) but I was hoping he'd be down to 21% by the end of the week. His nurse explained to me that he's probably just getting tired. Most likely, they will just keep increasing his oxygen little by little until he gets enough rest to start bringing it back down again. Please continue to pray for his lungs to strengthen and for the oxygen requirement to come down.

One last thing...I mentioned that Gaines was wearing a shirt yesterday but I forgot to mention that they had him swaddled as well. I found out today that this is because they are slowly trying to get him to hold his own tempeture. Before, his isolet was being warmed for him. Now they are slowly turning that down as well. Please pray that this goes well. It would be awesome to mark that off the list too.

Please continue to keep us in your prayers. We've been blessed with good days lately but we know that we've still got a ways to go.

Love to all,

Brittany

A couple of pictures from yesterday









Tuesday, May 12, 2009

Late!

So sorry that this is so late but the internet at our place is acting up today. Hopefully we'll get it straightened out tomorrow. This will be short because I'm at the hospital about to visit Gaines.

Gaines is having another good day. His oxygen is hanging around 28-30%...I'd like for it to be lower but its still really good for a baby with his lungs. His blood gases still look great and he's up to 3 lbs 7 ounces. We are so excited about his weight. Right now he's getting 16 ccs of milk every three hours and he's tolerating it well. The big news is that I got to hold him again today. Also, he had a shirt on this afternoon. He looked so cute. I did get pictures of me holding him and of him in his shirt. I'll try and get them up tomorrow if the internet cooperates.

That's about it for now. We are still having the best time with Reed. Please continue to keep Gaines in your prayers. It would be awesome if he could start working his way down to 21% oxygen. Then we could try weaning from the CPAP.

Oh...PS...He's 32 weeks today.

Love to all,

Brittany

Monday, May 11, 2009

Blessed

So this is my third post of the day. First of all, a pat on the back to me for posting three times with Reed here. Second, a quick update on Gaines. He's still holding strong. He's up to 12 ccs of milk every 3 hours, his lungs seem to get stronger everyday and his blood gases are still in the normal range.

I was planning on a hot bath since Reed is in bed now but I'm giving that up now to try and write this. Beau and I just got through opening our mail and packages from the last few days. I sat on the couch in our little apartment in a daze unable to comprehend everything. Even now I'm having trouble finding the words I'm looking for.

I cannot tell you how humbling it is to receive all of the cards, gifts, words of encouragement, etc. I honestly don't know what we've done to deserve the outpouring of love that we have received. Each card, gift, email, phone call and comment has been so uplifting to us and each one touches our heart. Not just today but all along this journey. When this first happened, we heard from so many people. I was so touched and appreciated it more than I can say but I felt like the novelty of our situation would wear off and we'd be just another sad story that no one remembered in a few weeks. For some reason that I'll never know, that hasn't happened. The cards, gifts etc we have received the past few days have been overwhelming to me.

It's not just the tangible things that we appreciate. I will forever be in debt to everyone out there who has ever said a prayer for Gaines and our family. It is because of these prayers that Gaines has come as far as he has. They are also the reason I have been able to keep my sanity the last 8 weeks (can you believe we've been here 8 weeks now?). There have been a lot of down times the last 56 days but through it all we have been continually blessed. I pray for each of you everyday. I thank God for all of your prayers and support and I ask Him to bless every person out there that has prayed for Gaines.

I don't know what it is about our story that has gotten the interest of so many people but I'm thankful for it. I will never be able to repay you all for your prayers, generosity, thoughtfulness and kindness. I will however use our experience to comfort other people in their times of need. When our Sunday School teacher was here last week he shared a verse with us that has stuck with me the past few days. I believe it holds part of the answer to the question we've been asking ourselves for the last 8 weeks...why me, why us?

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort that we ourselves have received from God. 2 Corinthians 3-4

This world would be a better place if everyone had the compassion that each of you have. I know that Beau and I couldn't have made it these past 8 weeks without your prayers and support. Please continue to keep us in your prayers as we still have a ways to go here in DC and back home with our tiny baby.

Love to all,

Brittany

Good Day

All is still well with Gaines today. We've made two visits so far and getting ready to go back after shift change at 7:30. He still seems to be holding his own. His oxygen is staying in the twenties...24 at some points. Today I asked the nurse what happens when he gets to 21%. She told me they'd just start weaning him off the CPAP. I believe they start off taking him off for an hour and then back on for a few and so forth.

I also found out that in a couple of days he should be able to wear little shirts. Kind of caught me off guard. I didn't even ask and the nurse just offered that up. Just a little something to look forward too. Over the weekend I learned that once he gets to 1800 grams (4 lbs I think), he gets to move to an open top bed. Right now he's in an islolet. I think he's a little over 1500 now.

We've had a great day today with Reed. He is so much fun. Right now he and Beau are practicing what all the animals say. I am so glad we decided to keep him here.

Please continue to keep our family in your prayers. We've made a lot of progress the last few days but we still have a ways to go. Gaines is improving but still not breathing on his own and we are still living 900 miles away from home. We are so thankful to everyone out there that continues to keep up with us.

Love to all,

Brittany

Monday Morning

Good morning all...we are starting the day off on a good note. Gaines had a good weekend and it has continued on into this week. His oxygen level is hanging around 28%...not too shabby for still being on CPAP. His blood gases were actually right in the middle of the normal range. They are only checking those once a day now. He's eating well. He is up to 10 ccs with less than 1 cc residual. His weight was up to 3 lbs 5.4 ounces this morning.

I asked his doctor last night when he'd get another head ultrasound and heart echo. The ultrasound should be Wednesday. Please pray that it shows the brain bleed has cleared up on its own. The doctor told me that he'd probably get another heart echo some time before he was released. Excuse me...what? Right now he looks so good clinically that they don't have a reason to believe there is a problem.

It seems like we have been MIA for a while. With Reed here we've just wanted to spend every spare second with him. He has been an angel and we have enjoyed having him up here so much. So much, that after MUCH thought and MUCH prayer, we have decided to keep him up here for a little while. Last night the thought of sending him home was enough to send me to tears. I expected it out of me but I was surprised that Beau had softened on his resolve to send him home. Beau didn't even think it was a good idea for him to sleep here this weekend and out of nowhere he changed his mind. Honestly, he had to sort of convince me. Obviously I want Reed here so much, but I was afraid of shafting Gaines of our time and energy. I don't know how I will ever have two children and not feel pulled between them. I just want to do what's best for both of them.

Having Reed here will definitely make life more interesting and it will certainly change our daily routine but I am committed to spending just as much time with Gaines as we have all along. He deserves our attention too...and he'll get it. We'll just have to make a few changes.

Please continue to keep our family in your prayers. Pray that having Reed here works and that Gaines continues with his stable progress. We pray for his lungs to continue developing, a healthy heart, the brain bleed to have cleared up and for him to keep eating well and growing.

Love to all,

Brittany

Sunday, May 10, 2009

A Mother's Day Surprise

We went to visit Gaines this morning and there was a surprise waiting for us at his bedside.

Saturday, May 9, 2009

Fun with Reed

Gaines' oxygen and CO2 are maintaining at the same levels as yesterday. He is tolerating his feedings better...his last feeding was 6 cc's and he had only 1 cc residual (undigested milk). Everything else seems to be status quo with him...what a blessing.

As promised, here are a few pictures of our day with Reed.
Beau

Friday, May 8, 2009

What a day.

This day has been one of the best we've had in a long time. The day started with sunshine after almost a week of rain and cloudy skies. Then we visited Gaines and Brittany got to hold him. Reed arrived after lunch and has been so much fun. Then we visited Gaines again this evening and he is tolerating his feedings much better. The day ended as we met up with family (my parents and my step-sister's family) and had dinner. It felt weird to go out to eat and sit around a table with so much family (there were 9 of us).

After dinner, a really cool thing happened. My step-sister (Stephanie) called me and described something that had just happened to them on the Metro after dinner. They were making small talk with a stranger on the train and the stranger asked Stephanie if her kids were out of school for the summer (she has a 12 year old and a 9 year old). Stephanie explained that the kids were still in school but they had decided to take a long weekend trip to DC. Stephanie explained that her step-brother, who was from out of town, had just had a baby at GWUH. The stranger on the train asked "Do you mean Beau and Brittany Daniel". Apparently she reads our blog. She couldn't remember how she ever stumbled upon our blog but she has been reading for some time. I think Stephanie and the stranger were amazed they had stumbled across each other. Small world.

Hopefully tomorrow will be even better than today. We plan to take Reed to a nearby playground in between hospital visits. I'm sure we'll have some pictures we can share with everyone.

Please pray that Gaines continues to improve.

Beau

Happy Early Mother's Day

Just a quick post to let you all know that Gaines gave me an early Mother's Day present today...I got to hold him! It took a lot of work on the nurse's part and I think it was pretty stressful on Gaines to be unhooked and re-hooked to the CPAP so I probably won't do it again for a while but it was awesome!

His nurse asked me if I wanted to hold him...just out of the blue. I hadn't even mentioned it. I thought I was confused so I said, "In my arms?" She laughed and said yes. He is so tiny. It pretty much felt like holding a wadded up blanket. He even opened one of his eyes to see what in the world was going on. I told Beau, it's like he knew Reed was coming today and wasn't going to be out done. Such a good day.

We don't have any pictures of it at this point because we left the camera home to charge the battery for Reed's visit. Beau took a few with his phone but he's not sure what happened to them. We'll try and figure it out and see if we can get them up here.

One quick concern...I'm a little worried about Gaines' eating. Right now it looks like he's only digesting about half of his food and hasn't "used the bathroom" (use your imagination) in two days. I just hope its not as sign of his VSDs becoming a problem. One of the concerns with them was that they wouldn't let enough blood get to the rest of his body. His lack of digestion a few days ago was a sign of this and I hope that this recent bout of it isn't the same thing.

Please keep him in your prayers

Brittany

Two Weeks Old!

I don't have a lot to report this morning but Reed is coming today so I don't know when I'll have the chance to update again. Gaines had another stable night last night. He's maintaining on the bubble CPAP. His oxygen is hanging around 25% and his blood gases look the same. His CO2 was 60 this morning. I can't remember if we told you or not but yesterday it was around 25...not quite the norm for Gaines. At our visit last night it was back up to 57. We'd still like it to be around 35-45 but 25 just wasn't right.

Let's see...what else? He's tolerating his feedings well. He gained 30 grams last night so he's back around 3 pounds 3 ounces. We want him to fatten up some. He has to be 4 pounds before he can go home. I hope now that he's eating again he'll pick up weight a little faster. They were giving him calories (TPN) when they weren't feeding him during the PDA closing business. I feel like actually eating has got to be helpful.

I've never seen Gaines cry as much as he did yesterday. It was kind of bittersweet. My heart ached because I couldn't pick him up and comfort him but I was glad that his lungs are strong enough for him to cry like that. I think it just shows the fight he's got in him.

Today is Gaines' two week birthday and I'm taking him a little present. Someone along the way sent us the tiniest little stuffed lamb and I've wanted him to have it for the longest time. I think he's big enough now to have it in his isolet. I hope they let him keep it in there.

Reed comes today and I am beyond excited. I woke up at 3 this morning and thought...12 more hours until I can see Reed. Please pray for his safe (and on time!) travels today. I cannot wait to get my hands on that precious child.

Also, if you happen to be in the GW hospital area of DC today and you see a bright blinding reflection, don't worry. It's just my white legs seeing the sun for the first time in 51 days.

Please keep Gaines in your prayers...strengthening lungs, healthy heart, and good feedings. Beau and I are especially praying for a good weekend for Gaines so that we can spend a lot of time with Reed.

Love to all,

Brittany

Thursday, May 7, 2009

Good News

When we visited Gaines this afternoon we were frustrated because it was 3:00 PM and he still had not had his heart echo. We asked Gaines' nurse to check with the attending doctor to find out what time the pediatric cardiologist would be doing the echo. We were stunned to find out that no heart echo would be needed. Gaines' clinicals look so good the doctors are confident the PDA has closed or is closing. He is maintaining his oxygen at ~25% and his CO2 has remained steady at 57. He is also starting to be fed again and is digesting the milk very well. He will probably have a heart echo soon (early next week) to monitor the VSD's.

Thank you for all your prayers. Today could have been a good or bad day. Thankfully, it appears to have been a good one. Please continue pray for Gaines.
Beau

Back to the Bubble...

Gaines has been back on the bubble CPAP for about 4 hours now and seems to be doing well. His oxygen is still around 24% which is awesome. They should be doing blood gases again soon. Please pray they stay in the normal range. I'm so proud of this little guy.

Please pray that his heart echo this afternoon shows that his PDA has closed and the VSDs are not a problem.

Love to all,

Brittany

Could be a big day...

Gaines' heart echo is sometime this afternoon. We should find out if his PDA valve has closed and if the 4 VSD's (small holes in his heart) have remained insignificant. By the way, Gaines had no "episodes" last night. His CO2 levels are maintaining at 57 and his oxygen has been weaned to only 23% on the cpap rate (room air is 21% oxygen). Remember, the cpap rate does slightly help Gaines breathe. The doctors told us yesterday that they plan to switch Gaines back to a regular cpap today.

Today is a big day for Gaines, he could take some big steps today. Please pray that we find out that Gaines' PDA valve has closed, that his VSD's are still insignificant, that he tolerates the regular cpap, and for patience, peace, and understanding for Brittany and me.

Beau

Wednesday, May 6, 2009

Gaines has pretty much maintained his good report from this morning. They've played with his oxygen some today but he's still maintaining about 28%. They were however able to reduce some of the pressure he's getting on the CPAP. The doctor mentioned that they would probably try and get him back on the bubble CPAP tomorrow. This would be instead of the CPAP rate that he's on now. The rate is giving him a little more help breathing but the bubble just provides him air and he has to breathe for himself. Please pray that this goes well.

His blood gases looked even better when they checked them again at noon. His carbon dioxide level was down to 56. Since this is looking so much better, they've decided to check it every 12 hours now instead of every 6. This is good news since they now have to stick him every time they do any blood work. I hate the thought of that poor baby getting so many sticks.

We also learned today that he had a head ultrasound yesterday that showed a grade one brain bleed. As I understand it, this is not a huge deal. Grade one is the best you can have (if you have to have one) and it will usually clear up on its own...meaning the blood will drain on its own. Our doctors have assured us that a developmental delay from a grade one bleed would be very rare. While we obviously would rather this not have happened, we are thankful that it was only a grade one. Please pray that no developmental delays occur and that the bleed clears up on its own.

Today has been a much better day for me (and thus for Beau). While we would have never chosen this situation for ourselves, it has been amazing to watch God work. There have been many times when I think I have reached the limit of what I can take. God doesn't always agree but he does always provide what we need to make it through each situation. Last night I had one of the lowest nights since I'd been here. Thankfully God gave me a peace to get through it and this morning he gave us the best news we've had in several days.

Also, Monday we had a rough night when we found out about some concerns over Gaines' heart. Shortly after, we learned of our Sunday School teacher's visit, received a dinner invitation from a man from my company/go to church with and had an offer from friends to come over and bring dinner to and eat with us. I honestly believe that God gave us these visitors during this waiting time for us on purpose.

These are just two of the many, many ways God has taken care of us since we've been here. We've mentioned a few along the way but these are two of the most recent occurrences. To me they are tangible examples of God's promise not to forsake you in the storm. We still have a ways to go in this storm and many concerns that are too far ahead for me to focus on right now but I know that God is not going to give us anything that He won't carry us through.

Please keep Gaines and our family in your prayers. Reed will be here in less than 48 hours! Please pray for his and Beau's parents' safe travels.

Love to all,

Brittany

Wednesday Morning Surprise

I woke up this morning and called the NICU to find out how Gaines did overnight. Our favorite Nurse answered (she is taking care of him today). She proceeded to tell me that they ran some labs this morning and had gotten results back on two and those two looked good. She also told me that Gaines' CO2 came down last night from 62 to 59. All his other blood gases look good. Then came the surprise...his oxygen setting was on 42% when we left last night. He has been maintaining about 42% oxygen for the last several days. This morning his oxygen is 28%! Praise God for steps in the right direction. We'll post more as we know more. Hopefully more of the lab results will be back when we get to the hospital.

Beau

Tuesday, May 5, 2009

Tuesday Night

Just a quick update. We just got home from visiting Gaines. Everything is pretty much still the same but his blood gases look better. His CO2 came down to 62. Still not the 45 we want but SO much better than the 90s of yesterday. Please continue to keep him in your prayers. Pray for healthy lungs and a healthy heart. Pray that his PDA closes with the medication and the VSDs do not become a problem.

I cannot tell you how sweet this baby is. He is so precious to us and while we know it won't be tomorrow, we cannot wait to get this child home and be a family again.

I don't think I mentioned this yesterday but I thought it was kind of funny. I was kidding around and asked Gaines' doctor when we could take him home. He thought for a minute and said...Not tonight. At least he was honest.

Love to all,

Brittany

31 Weeks

So far things still seem to be the same with Gaines. His blood gases are ok...still not great but ok and his oxygen is still around 40%. I think they plan to just try and maintain things the next few days while they try and close the PDA. I pray that is closes with the medication and that the holes (VSDs) don't present a problem. I'm pretty apprehensive about this step we are on now because it could open the door to new issues with his heart (the VSDs) but I'm trying to remember that it could also be just what he needs. It could be a big step for him.

I tell you, that was a hard conversation to have yesterday. There are just so many times you can hear the words heart failure in reference to your child. They kept mentioning problems that could lead to heart failure and I finally had to stop them and have them explain heart failure to us. To me, heart failure is the end of the road...your heart fails and stops. Thankfully, heart failure can include many things and is apparently treatable. Still not something I want to deal with but at least its something that could be dealt with should the need arise. I pray that it doesn't.

Today is better but last night was a little bit of a rough night for me. I'd been fighting back the tears all day but finally right before bed I couldn't hold them back anymore. In my head I just kept thinking, I can't go home without him. Thankfully, I have an awesome husband that assured me we weren't. We don't know how long our road will be but one day, we will take Gaines home with us to be a family. I have never wanted anything more in my life.

On a lighter note, we just ran some normal errands. We found a regular grocery store and picked up a few things. In the midst of this craziness, doing normal things helps us keep our sanity. Also, we got several cards and packages yesterday. We are so thankful for them as they are such a distraction from what our life has become. We got one package from a lady that we don't know in Texas. There were several cards that kids in her church made for us and I cannot tell you how great it was. Several drew little mazes for us to do in our spare time...I thought they were awesome. I was able to genuinely laugh and relax for a minute.

Please keep our family in your prayers. Please pray that Gaines' PDA closes with the medication and that the VSDs do not present a problem. Also, please pray that his lungs continue to get stronger.

Love to all,

Brittany

Monday, May 4, 2009

Specific Prayer Request

We just got home from visiting Gaines. The doctors got the results from his heart echo today and I am going to try and explain everything. I am going to give the short version excluding all the medical terms.

From the heart echo the doctors confirmed that his PDA valve is still open, that the blood flow in the PDA is only flowing in one direction, and that the left side of his heart is enlarged. Originally the PDA valve had bilateral blood flow. The pulmonary hypertension in Gaines' lungs was causing enough pressure in his lungs that blood was flowing through the PDA valve in both directions; from the heart to the lungs and from the lungs to the heart. This bilateral flow was actually helping Gaines' pulmonary hypertension. Now, the pulmonary hypertension is gone which means the pressure in his lungs has decreased. This means the flow in his PDA is now mostly from his heart to his lungs.

The flow of blood from his heart to his lungs basically means the blood is getting back to his heart much quicker. This causes the left side of his heart to work harder which is why it is enlarged. This flow of blood through the PDA also means less blood is going to the rest of his body and some of his other organs may not be getting adequate blood supply.

In a separate issue (but related), Gaines has not been digesting his food very well. This could be because his intestines are not getting adequate blood flow and not functioning properly. Again, it all goes back to the PDA valve.

So, the doctors think it is time to close the valve. They close the valve by giving Gaines medicine once per day over the next three days. The first dose will be given at 10 PM tonight. On Thursday, Gaines will have another heart echo to make sure the PDA valve is closed. We were told this treatment to close the PDA valve works 50-60% of the time. If it does not work, the doctors will consider the risks/benefits of leaving the PDA valve open versus closing it with a surgical procedure. Hopefully, the PDA valve closes.

There is another concern if the PDA valve closes. Gaines has 4 small holes in his heart that the doctors currently classify as insignificant. If the valve closes, the amount of blood going through the heart and the pressure in the heart will increase and possibly cause these 4 small holes to become significant. The 4 small holes could basically do the same thing the PDA valve was doing, which is allowing blood to flow in the wrong direction back to the lungs. If this happens, there is a way to treat this with medication and surgery if it requires it.

Long story short, we need to close the PDA valve. We hope we can close it without a surgical procedure. If it closes, we hope Gaines' little heart tolerates it. I know this was a lot of information and very specific, but I wanted everyone to know exactly what prayers need to be said for Gaines. He has proven to be a fighter and we expect no different from him now.

Beau

God's Presence

This morning was a tough morning for us, specifically Brittany. We woke up hoping to hear that Gaines' CO2 levels had decreased or at the very least stayed the same. We started the day with a call to the NICU to find out that his CO2 levels had actually increased overnight. Sometimes it seems hard to stay positive when you start the day with negative news.

We stepped out of our "home" to find it cold and raining. The weather seemed to fit our moods. Brittany and I went to the hospital this morning somewhat emotionally defeated. The morning visit went well, Gaines' nurse today is one we really like. We left the hospital this morning and Brittany was having a hard time fighting back tears. We know that Gaines is in a much better place now than he was a week ago but it is so hard to have your child in the hospital. Many of you probably know the feeling....I'm sure the pain is the same know matter how old your child is. You just never want them to experience pain of any kind.

As we left the hospital we got a telephone call from our Sunday School Teacher from AL. He is in the military and is going to be in DC on Wednesday for work. He was asking if he could come visit us this Wednesday afternoon. We then got a telephone call from a couple that used to be in our Sunday School class back home but moved to DC within the last year. They wanted to know if they could come visit us Tuesday night. Some of you may agree or disagree, but I think God is constantly working in our lives. Sometimes He is working discreetly "behind the scenes" and sometimes He does something so obvious you can not ignore His presence. It is amazing to me that we were feeling defeated/down and then we got these two phone calls. It was if God was reminding us that this journey would have its up and downs but that He would be there providing for us every step of the way. We definitely experienced a "God Thing" today.

We did go by and visit Gaines again this afternoon. His CO2 levels are still high but his PH level in his blood is good. It seems as though his little body is compensating for the high CO2 levels. The doctors reminded us that this could change at any moment and they may have to re-intubate him. While we were there we did get a few new pictures of Gaines holding his mom's hand.

Beau



10 Days Old

Gaines is 10 days old today. I believe I can honestly say that they've been the longest 10 days of my life. I just keep trying to remember that each day is one day closer to us going home. I've been missing home a lot today. I just wish I had a definite date to look towards. It's a nasty rainy day here (again!) and Gaines seems to be having a down day so I'm having a hard time being positive. I will say that I am fighting it hard and so far I haven't let myself get too down...yet. Check back in 5 minutes...that could change.

Gaines doesn't seem to be in any mood to bring is CO2 (I'm tired of spelling out carbon dioxide) level down. It was actually at 92 (should be 45) at his last check. He's still on CPAP and the doctors' plan is to start suctioning him with hydro-cortizone. This is a steroid that should help with the secretions that he's got. As best I can tell, these secretions are basically mucus that he can't cough up himself. It would be like if you had a cold and mucus in your lungs...you'd have trouble breathing too. He needs to breathe well to be able to breathe out the CO2.

I believe everything else is still the same. I think I forgot to mention that he's on some medicine to help with his digestive system. It doesn't seem to be anything too out of the ordinary. He has gained one ounce so that's good news. He's now up to 3 lbs 3 oz. He'll have to be at least 4 pounds before he can be released...among various other things. He seems to be tolerating his feedings. He's up to 7 ccs every 3 hours.

His heart echo will probably be this afternoon sometime. Please pray that we'll be able to rule out any heart problems. I'm kind of concerned about this because after the last echo they were going to wait 5 days to repeat it. I feel like they are doing it earlier because the suspect a problem.

We've got a great nurse today and while she won't tell me that everything is going to be ok (still haven't found anyone to tell me that) she's pretty reassuring that all of this is typical for a baby of Gaines' circumstances. I tell you, a good nurse makes all the difference in the world.

Please continue to keep Gaines in your prayers. Pray for us to hit an up on the roller coaster again soon.

Love to all,

Brittany

Sunday, May 3, 2009

Sunday Night Prayer Requests

I just have a quick prayer request for tonight/tomorrow. Our nurse tonight mentioned that if Gaines' carbon dioxide level didn't go down by tomorrow (he was back up to 80 something at 6 pm) that they might re-intubate him tomorrow. That didn't come from a doctor so its not definite but I've been expecting it the last day or so. I've known that is a possibility all along but I hate the thought of it. Please pray specifically for lower carbon dioxide levels. He also has a heart echo tomorrow. Please pray that we are able to rule out any heart problems.

Love to all,

Brittany

Sunday Afternoon Notes

I still don't have much more to report today. We just got back from visiting Gaines again. His oxygen seems to be consistently hanging around 40% and his carbon dioxide doesn't seem to be budging much BUT, he's still on CPAP so that's a blessing. I'm trying hard not to be disappointed that he's not doing fabulous on it and ready to be weaned to breathing on his own. In my head I know that's ridiculous, but in your heart you hope that your baby is the one that's going to prove them all wrong. I guess its just that he just moved so quickly from the ossilator to CPAP that I hoped he was going to continue moving forward at the same pace. I know we'll get there, I've just got to be patient. Easier said than done.

They did decide to give Gaines caffeine this afternoon. I believe it's supposed to prevent the "bradys" or episodes of bradycardia. I'm starting to learn the NICU lingo. I think our nurse today was surprised to hear that I knew where his carbon dioxide level should be. I SO wish I didn't know it. I wish I was worrying about a sleeping schedule or even colic.

It's a dreary day here so it kind of lends itself to a sullen mood. I'm trying not to let myself sink into that. I've done really well with my emotions and spirit since last week but I'd be lying if I said I didn't get down from time to time. Nothing major, but last night I decided that I really wanted to hold my baby and I just can't right now. He's not quite there yet but one day soon I hope.

A bright spot...Beau and I were out in Georgetown yesterday (or one day recently...who knows anymore) and we saw some little preemie clothes at the baby Gap. They were SO cute and tiny. I haven't bought anything yet but I can't wait to be able to put some clothes on this little guy. Shopping for baby clothes just seemed like such a normal thing to do. Georgetown is the furthest I've been from the hospital and that was even a stretch for me. It's walking distance so its really not that far but I struggle with getting too far away right now.

I guess that's really about it for now. Please just continue to keep Gaines and our family in your prayers. Please pray for a healthy heart and lungs.

Love to all,

Brittany

Sunday Morning

We are on our way to visit Gaines this morning so I should have more info later. For now, we know that he had a stable night last night on the CPAP Rate. They had to up the pressure on it to 22/5 from 18/5 but he seems to be doing ok on that. His last carbon dioxide check came down from 72 (I believe) to 65. It's going in the right direction but we'd like for it to get a little lower. His oxygen is down to 37%. Hopefully he got a good rest last night and will be able to bring those numbers down a little more today...especially the carbon dioxide.

Please continue to keep Gaines and our family in your prayers.

Love to all,

Brittany

Saturday, May 2, 2009

Two steps forward, one step back

Gaines has made tremendous progress in the past couple of days. It was just a few short days ago that he was on the oscillator. He was then moved to a ventilator and then the cpap. He has been on the cpap for ~48 hours.

This afternoon the CO2 in his blood gases was high. He measured at 80...this was extremely high since his previous reading was 58 and the doctors would like to see it below 50. The doctors waited a couple of hours and measured it again and it had fallen to 72. They would have liked to see more progress so the doctors decided to upgrade his cpap to the rate cpap. Basically, a ventilator is used to provide him with breaths through his nose rather than re-intubate him. We are told this is typical of preemies. Many preemies that are on cpap have to go back and forth between the cpap and ventilator until the cpap "sticks". The doctors explained it that Gaines had been breathing hard on his own for two days and needed a little break. Hopefully this will give him the rest he needs and he will be able to do better on the cpap when he is ready.

Hopefully we will have more to report after our visit with Gaines tonight. The nurses will be measuring his blood gases again at 8:00. We pray that they will be better and his little body is getting the rest it needs.

Beau

Not Much to Report

I don't really have much to report this morning. Gaines seems to still be holding on with the CPAP. They are very slowly weaning his oxygen. I'm not sure what percentage oxygen he was at in our last report but he was at 38% this morning and holding his sats very well. I imagine they reduced it some right after we left. His blood gases looked better this morning. We've been specifically watching his carbon dioxide level. It was at 65 and at last check had come down to 58. They want it to be in or around the 40s so while not perfect, its definitely better.

He's had a few occurrences of bradycardia (slowed heart rate) and apnea (lapse in breathing) but he's come out of them on his own. According to our nurse, this is typical of someone with Gaines circumstances. I'd like them to stop all together but overall I feel good about where things are this morning. Please continue to keep praying for his lungs to mature and heal, and for no heart problems.

Something I forgot to mention...now that Gaines is no longer on the ventilator you can hear his tiny cries when he doesn't like something (like a diaper change). It is the SWEETEST little sound. I think it sounds like a tiny kitten. He still wiggles around a good bit but was sleeping peacefully this morning.

Beau and I are still doing well. We have been able to hold strong and can really feel God's comfort and peace. We just keep focusing on the day when we can be a family at home again. Reed comes again next weekend and I CANNOT wait.

I believe Reed is headed to the zoo today with his cousins. I'm sure he'll have a good time. I cannot tell you how much I miss that little boy. I think its even harder now that I'm out and physically able to care for him. Please pray for extra protection for Reed. I just pray that he stays safe and healthy and happy. I miss him terribly.

Please keep us in your prayers. We are so thankful that Gaines is tolerating the CPAP and we are in no rush but I'd love for him to come off the oxygen a little more today and for the blood gases to keep going in the right direction. Your prayers have been such a blessing to our family.

Love to all,

Brittany

Friday, May 1, 2009

Good News...not Great News & Pictures

Gaines continues to remain stable on the cpap. His blood gas levels remain the same and the doctors seem to be okay with them and will now monitor them every 12 hours rather than every 6. The doctors have told us that the blood gases are what they expect for Gaines "age" and the fact he was recently extubated. However, we hope to see some improvement as his blood gas levels are higher than what is considered normal. He has maintained 40-45% oxygen since last night and the doctors increased his feedings by 2 cc's (he is fed every 3 hours). It seems as though he is holding his own with the cpap.

We got the results back from the heart echo. The news is good, not great. The Pediatric Cardiologist told us that his aorta looks good and there are no signs of narrowing at this time (this was great news). However, there is some tissue inside his PDA valve that slightly extends into his aorta. As his PDA valve closes, the tissue will constrict possibly causing some narrowing of the aorta. This is something the Cardiologist wants to monitor and has ordered another heart echo for early next week. Basically, we can rule out any narrowing of the aorta at this time, but we can not rule it out in the future. We were hoping to get more definitive news from the echo so we could rule out the narrowing aorta altogether. Oh well, as we have learned after one week in the NICU...at least it wasn't bad news.

Please continue to pray for Gaines' lungs, heart and overall health. I wish all of you could be in that NICU and feel God's presence. Our prayers are being answered. Below are a few new pictures of Gaines.

Beau


Look...very few machines!