Monday, August 31, 2009

Getting Ready

Gaines had two doctors look at him today. I know, normally we are complaining about the doctors switching all the time and today he actually had two doctors review his progress. The NICU had very young twins admitted today. Since the twins were so young and so small, they had an extra doctor. Anyway, both doctors were pleased with Gaines' progress. They decided to keep him on lasix as needed rather than a scheduled dose every day. They also increased the calories in his bottles.

The most exciting news of the day was the doctors increased his oxygen to 100%. He is on 2 liters, 100% oxygen. They did this because he will be on 100% when he comes home. Basically, they are starting the process of getting him ready to go home. Please understand this process of getting him ready to go home will take weeks not days. However, it is exciting to hear a doctor mention Gaines going home. Maybe the end is near.

Please pray for Gaines and please pray for this specific prayer request. Brittany and I think we have found someone to be Gaines' nanny. I left her a message today offering her the job. We haven't heard back yet but are praying that this works out.

Beau

Sunday, August 30, 2009

Roller Coaster

A lot has happened since our last post on Thursday night. Friday around lunch I got a call from Gaines' nurse letting me know that the doctor had her do a "work up" on Gaines because he was breathing pretty hard and his lungs sounded "wet". Basically a work up means blood work, xrays, etc. Whatever the doctor saw in these reports made him decide to up Gaines' flow to 4 liters and to stop bottle feeds until he wasn't breathing so hard. I was devastated. All I could think was, I knew it...I knew better than to get my hopes up.

After talking to the doctor on Friday evening I felt a little better about things. He felt like this was just a little blip and not the devastating setback that I did. He felt like the reason Gaines was having to work so much harder to breathe was because he was retaining a lot of fluid. Dr. Brittany feels like this is because they cut out his lasix so fast. The plan to correct this little "blip" was to give him more lasix and hopefully get the fluid off his lungs. The doctor told me that Gaines should hopefully be back at 2 liters by sunrise on Saturday.

Well, Saturday afternoon rolled around and he was only down to 3.5 liters. I was so discouraged. I felt like I'd been punched in the stomach. Saturday night before I went to bed he was taking all bottles again but still at 3.5 liters. I tried to stay positive but on the inside I was kicking myself for getting my hopes up...I knew better.

Thankfully, when I woke up this morning he was down to 3 liters and I felt a little better. At our visit after church he was down to 2.5 and that was even more of a relief. At the late afternoon/evening visit he was finally back to 2 liters and I was so excited. I am so thankful that he was able to get back down where he was.

He seemed to be breathing easier to me today than he was last Thursday so that made me feel good too. He is not currently getting regular doses of lasix like he was a few weeks ago. I believe he is still on an as needed basis but I'm going to talk to the new doctor tomorrow about giving him a daily dose for now. I know they are not good for him but I'm afraid that for now they are a necessary evil. This week's doctor has been very informative and I got an anatomy/phsyiology lesson on bone health, osteopenia and how the lasix play into that. I won't bore you with all the details but I do understand why they want him off of them. I just don't think he's ready.

Next week's doctor is the doctor that had Gaines for two whole weeks a while back. I'm anxious for him to see him tomorrow. I hope that he's as impressed with Gaines' progress as I am. I feel like he's pretty conservative so I think if he is pleased with everything it will be a good sign.

One interesting thing here (to me anyway) and then I'll run...Sunday night's are so busy. Friday afternoon as I was driving to the hospital I saw a giant rainbow ahead of me. I just thought it was so fitting that on a day that I was so down I'm given a huge reminder of God's promise. He doesn't promise to give us everything our heart desires and he doesn't promise that we will never have storms in our lives but he does promise that no matter what, He'll be with us and He'll give us the strength to get through it.

Have a good week.

Love to all,

Brittany

PS - Reed attended another Birthday party this past Saturday. The party was at one of the shopping malls here in town. The party was held at a carousel inside the shopping mall. There was cake, food, other kids and carousel rides. With all of this available to him, watch what Reed decided to do instead.

video

Thursday, August 27, 2009

Feeding Tube

I went to visit Gaines this afternoon and found out that he took all of his bottles last night and this morning. As I began to give him his bottle at 2:00, I realized he didn't have his feeding tube in his nose. I figured he must have pulled it out. I was wrong. He has been so successful at bottle feedings that the nurses took it out. Way to go Gaines!

Gaines got another dose of Lasix today because he gained 4 ounces last night (he now weighs 9 pounds 4 ounces). His oxygen has crept up to 68% but he is at 2 Liters of flow. Hopefully Gaines will get used to the 2 Liters of flow over the next couple of days. He has made so much progress in the past three weeks, please pray that he keeps moving forward and gets to come home soon. Also, Brittany and I are meeting with a potential nanny for Gaines on Saturday. Please pray that God's gives us the wisdom and patience as we search for the right person.

Wednesday, August 26, 2009

Two Liters!

I feel like every post's title lately has an exclamation point on it...and if they don't they should. Gaines got turned down to 2 liters today and seems to be doing pretty well with it so far. I'm so proud of him. Also, he's taken his last four feedings by bottle. I'll find out how he did at his 8 p.m. feeding when I call in a little while. If he took it by bottle, its a new record. The doctor today wrote orders to feed Gaines by bottle at any feeding that he was awake and alert. Basically just to use their judgement and not force him into anything that he's not up for. Going to 2 liters today is a big enough adjustment.

I'm slowly warming to the idea that maybe this NICU experience could be slowly wrapping up (in the next several weeks...not tomorrow or anything). There...I said it and I've probably jinxed things now. I'm scared to death to admit that because I'm terrified of being wrong. Even now I'm thinking about deleting that sentence. I'm so afraid to hope but the tiny piece of me that I'm letting hope is so excited. I don't know if any of that makes sense. This feeling is so weird and impossible to put into words. Even for me...HA!

Please keep Gaines in your prayers. Pray that he is able to take a full day of bottles soon and for his lungs to continue healing. Pray that he tolerates 2 liters well and that soon he'll be able to wean down again soon.

Love to all,

Brittany

Tuesday, August 25, 2009

4 Bottles in a Row!

Gaines took his entire bottle four times in a row today! The plan was to feed him by bottle twice in a row and then feed him by tube (this was so he could "rest" during his tube feeding). However, he took his entire bottle at 8:00 this morning and then he took his entire bottle at 11:00. His 2:00 feeding was supposed to be by tube but his nurse decided to try a bottle feed because he was wide awake. He took the entire bottle at 2:00 and then took his entire bottle at 5:00 pm as well. I'm pretty sure that it was just last Tuesday that Brittany asked everyone on the blog to pray for Gaines to improve his bottle feeds in hopes to avoid him coming home with a feeding tube. Isn't amazing how quickly God answers prayers?

Everything else is pretty much the same. Gaines is requiring between 50% and 60% oxygen on 2.5 liters of flow. The doctor did increase his feedings from 63 CC's to 65 CC's. Other than that, not much else to report. Please pray that Gaines continues to take his bottles and that his little lungs continue to improve.

Monday, August 24, 2009

2.5 Liters

Gaines continues to improve and Beau and I are still in awe of how far our little Gaines has come in the last few weeks. After weeks and weeks of slight progress and moving forward only to take a few steps back, Gaines seems to be only moving forward and doing it faster than we have ever seen. The big news of the day is that they turned him down to 2.5 liters. Right after they did it, his oxygen had to be bumped up to about 60% but he quickly got used to it and came back down to 50%. It seems to me that he is doing better going from 3 to 2.5 than he did going from 4 to 3.

The plan is to let him stay at 2.5 for a couple of days and if he does well, then we'll try to turn him down to 2 liters. That's super exciting to me because while we'd like for him to go home on less than 2 liters, he can't go home on any more than 2. So, at least he will be in a go home range.

As far as bottles go, today Gaines was taking bottles every other feeding and he took every one of them. The plan for tomorrow (probably) is to let him try bottle, bottle, feeding tube...and so on. Keep in mind that this time last week we were talking feeding tube surgery. Gaines had never taken a whole bottle and today he's taking half of his feedings by bottle...on less oxygen. This is so awesome and just pure evidence of God answering prayers.

Beau and I talked today about needing to start the search for the right person to take care of Gaines at home while we work. For some reason this really freaks me out. I think I'm just so afraid of getting things ready for Gaines to come home.

I'm terrified of getting my hopes up of him coming home soon (in a month or so) and then things stalling or going backwards. Part of it is also fear of actually having him home. There is nothing I want more than to have him home but do you have any idea how scary its going to be? I think I might be getting ahead of myself here...he's still got a good ways to go before we even start to think about home. See! I'm starting to get my hopes up and I KNOW that I shouldn't.

In Reed news, he's got a couple of new tricks that he's working on. I heard him saying a bunch of letters last night so I started singing the ABCs and he filled in some of the letters. Also, he's trying to count on his fingers. He's got 1, 2 and 8,9, 10 down. We've just got to work on the middle numbers. I'm telling y'all...genius.

Oh, and Reed made Beau's year tonight. Beau was watching football and they discussed it for a second and then Reed said, "I want to watch footsball". It came out slow and broken but he said it several times and each time Beau had a giant smile on his face.

That's about it for now. Please keep praying for Gaines. He's doing so well. Please pray that it continues.

Love to all,

Brittany

Sunday, August 23, 2009

Happy 4 Month Birthday!

Gaines turn 4 months old on Monday, August 24th. Kind of hard to believe isn't it? Amazing how far he has come in 4 months. He has continued to improve over the weekend. He is now being fed by bottle 4 times per day (every other feeding). He does pretty well, probably taking his entire 63 CC bottle at least 2 maybe 3 times per day. He is on 50% oxygen and three liters of flow. There is a possibility tomorrow that the doctor will want to wean Gaines' flow...we'll wait and see. He is also 9 pounds 1 ounce.

I have posted a few pictures below. The first picture is of Gaines when he was one week old. The others are from this weekend. Amazing, isn't it?









Saturday, August 22, 2009

Still Doing Well

Hello all! I hope your weekend is going as well as ours. We've had a busy but good couple of days. Gaines is continuing to do well with his bottles. Today they decided that he could start having bottles 3 times a day. They limit the number a day he can try so as not to tire him out. Since Thursday (when he first took a whole bottle), I think he's really only not done well with one. To me taking 50 or more ccs is great. He only gets 63 ccs per feeding.

Everything else seems to pretty much be moving in the right direction. His oxygen got bumped up to 55% and he gained too much weight the last two nights but that seems to be due to the lasix that they cut out. Right now he is only getting lasix on an as needed basis and not necessarily everyday. He had to get a dose today but maybe that will help him get used to not having them all the time.

I think that's about it for now. Please continue to pray for Gaines. He is doing great but he still needs your prayers. We are dying to get him home and to FINALLY get our family together.

Oh, I took some really cute pictures of Gaines tonight so be sure to check back tomorrow. I might be able to get my technical assistant to post them.

Thursday, August 20, 2009

An Answered Prayer

So remember two nights ago when I asked for you all to please pray for him to start taking his bottles better? Well guess what. Gaines took a whole bottle today at his two o'clock feeding! Beau and I (and all the nurses) are so excited. I pray that he's able to do it again tonight and that it wasn't just a fluke. Right now he is supposed to be trying the bottle twice a day...every 12 hours. Hopefully he'll do well tonight and tomorrow be able to pick up the bottle a little more often.

Today's doctor changed several things, including his milk concoction, so that could be what got him going today. His food might taste better without all the extra additives in it. His milk was being supplemented with one kind of formula and MCT oil (and maybe a few other things) to make it more caloric. They are now only supplementing with a preemie formula. I'm hoping that this change will get the little guy excited about eating.

The doctor also took Gaines off of his Reglan and Zantac (both were for his reflux) and his Lasix. A lot of big changes. I'm curious to see if he can handle it. We've known all along that Gaines is on a LOT of medicines and I think now that the doctor (this one anyway) wants to try and get rid of some. I'm ok with trying...they can always add them back.

Also, his oxygen is back down to 50% which is just about where is was on Monday when they changed his parameters and we had to bump him to 70%. I am so thankful for that because even with the new parameters and the loss of one dose of Lasix (the no Lasix deal started today but he lost one dose on Monday) he's able to bring his oxygen requirement down. I am loving this progress and PRAY that it keeps up.

Today has been a much needed good day. I've had a pretty rough week with all the doctor craziness and everything. I know that doctor changes may seem silly to some of you but in this situation, all we can do is trust the doctors...I don't know how to make Gaines better. Its just when their plans/ideas conflict with each other you lose some of that ability to trust them and it adds a lot of stress to an already stressful situation.

Several times this week I have just been in tears because I am so emotionally tired of this. It has been a long 5 months (PS...Gaines will be 4 months on Monday). I'm so tired of being strong and there are many days that I just want to curl up in bed and pretend this never happened. The good news is that Gaines isn't giving up and I'm sure not either. If that little baby can keep fighting, so can I. Even when I think I can't take another day.

Please continue to keep Gaines in your prayers. Keep praying for his lungs and for those bottle feedings. Today was huge but he still has a long way to go. Also, please keep all of the NICU babies and their families in your prayers. For many parents their NICU journey is just beginning.

Love to all,

Brittany

Wednesday, August 19, 2009

Still a Little Frustrated

Gaines is doing very well. His oxygen was increased yesterday to 70% because the doctor was requiring his SATS to be above 95. Since yesterday, the nurses have been able to wean his oxygen down to 58% and his SATS are still above 95. Pretty impressive on its own, but remember the doctor also reduced his lasix from 3 doses per day to only 2. He is really doing well.

There was some concern because Gaines gained 4 ounces of weight the very first night after the doctor reduced the dosage of lasix. However, last night he actually lost an ounce. Hopefully last night's weight loss was a good sign that he will tolerate the reduced lasix. By the way, he is close to 9 pounds weighing in at 8 pounds 13 ounces.

We did get to talk to the new doctor today. He called Brittany about 4:15 in the afternoon. Brittany was able to get some explanations regarding Gaines' care and "the plan" for him. However, no one could really tell us how long this doctor will be at Gaines' hospital. Apparently he is filling in for another doctor and we weren't even able to find out which doctor would be at the hospital tomorrow, much less the rest of the week. A new doctor every week is frustrating enough. You can imagine our frustrations having one doctor one day and a different one the next.

I had to remind myself today to not miss the forest for the trees. I was focusing so much on my frustration with the doctor situation that I was missing the progress Gaines is making. I know it is the devil at work. God is performing some amazing miracles right now in Gaines and I was missing them because of my frustrations. Even with all the changes the doctors are making, he just continues to move in the right direction. I feel like we just need to get out of his way.

Please pray that his lungs continue to heal and that he continues to improve his bottle feedings. Also, please pray for guidance and patience for his doctors, his nurses, and Brittany and me.

Beau

Tuesday, August 18, 2009

A Good but Frustrating Day

Today has been a good yet frustrating day. Gaines is still doing very well. He’s still on 3 liters because his doctor was not quite ready to wean him yet and I agree. I want to make sure he’s doing well on 3 before we attempt 2. I think her rationale is a little different from mine though. I think she is trying to wean him off of his lasix some first. I don’t think I’m in total agreement with that plan right now but I’m just sitting back and letting her try it. All along the way doctors have occasionally tried to wean his lasix but it never really goes well. For some reason he really responds to them. The doctors want to wean them because they are a pretty strong diuretic. They want him on gentler diuretics because the lasix can cause kidney and bone problems. Anyway, they cut out a dose yesterday and he gained a bunch of weight last night…3-4 ounces. He should only gain about 1 ounce a day right now. The doctor just wants to watch him to see if the extra weight could be “real” or just extra fluid before she gives the lasix back.

Now for the part I’m annoyed about. We could look at his oxygen requirement to see if he was requiring more oxygen today without that dose of lasix yesterday BUT the doctor changed his parameters (what level of sats they require) so now Gaines is requiring 70% oxygen. It doesn’t mean he’s doing worse, it just means this doctor wants his sats higher, so they have had to turn him up. I’m so frustrated. Two of our doctors have accepted lower sats so as not to over oxygenate him…or not give him more than he needs. This doctor wants his sats to be between 95-98 so as not to put extra stress on his heart. I’m not frustrated with this doctor’s requirements; I’m just frustrated that different doctors within the same group differ so much on their thoughts on this. The doctors change every week so that means the requirements do too. This may seem small but it’s enough to drive you crazy when your baby goes from 48% to 70% oxygen because of a new doctor’s parameters. Two weeks ago the doctor said, if he gets above 93…wean his oxygen. This one says, if he’s not above 95, turn him up. I’m so annoyed. Oh, and PS, we get another new doctor tomorrow…one we’ve never met. Don’t get me wrong, we love all of the doctors in and of themselves (we really do) but this changing philosophies every week is driving me crazy. I’d be fine with either philosophy…I just wish they’d stick to ONE!

But anyway…I got off track there.

He really is doing well today (he ought to be on 70% oxygen!). Today’s exciting news is that he took 43 ccs of his bottle this morning! That’s the new record. He is getting better with his bottle feedings but in typical Gaines fashion…he’s doing it at a snail’s pace. I have a specific prayer request for you today. Please pray that Gaines starts making better progress on his feedings. I talked with his doctor this morning about the increasing possibility of Gaines needing a feeding tube (a more permanent tube that would go directly to his stomach…right now his goes down his nose).

The big deal here (other than the fact that he’s not feeding well) is that it would require surgery. I asked if it meant he’d be put back on a ventilator but the doctor says not necessarily. I won’t go into all the details but it would depend on how strong a stomach/esophagus muscle is. I asked if his hernia surgery could be done at the same time and the doctor said it would be up to his pulmonologist. If all of this happens, he’d be transferred to Birmingham and released to a pulmonologist since he’s a “chronic” patient. Basically, so that he could have a pediatric anesthesiologist, they’d transfer him to Birmingham and let a lung doctor (pulmonologist) be his primary physician until he could get the surgery and be returned home (as I understand it). Doing the hernia surgery now could put extra pressure on his lungs as his intestines would now be back in his body where they belong. So…we’ll have to see what a pulmonologist thinks if this feeding tube surgery ever actually happens.

Speaking of home, we talked about that a little bit today too. I asked if October was a reasonable time frame and the doctor said, “I hope he’s home by then…I hope he’s home within a month”. Now…do NOT get excited about this. I’ve heard this several times before and we’re still here. But, I do think it would be reasonable to think that he could be home in 60 days. I know better than to get my hopes up about the 30 days but I know that I will and I’ll be upset next week when another doctor tells me I’m crazy…Did y’all know I’m psychic? Honestly I think that in 30 days we might be looking at this feeding tube surgery and then we’d deal with that and then he could come home. But who really knows? Please pray for my patience as every day it is harder and harder to leave him there. I know that’s where he needs to be right now but when I have to leave and he’s awake looking at me, its dang near impossible.

Anyway, I know this is a long one but I just wanted to fill you in. Please pray for Gaines’ lungs and feedings. I would LOVE to avoid this feeding tube situation.

Monday, August 17, 2009

Quick Update

Just a reminder...Gaines has five doctors currently taking care of him. They rotate between the major hospitals in our area. Normally, one doctor is at his hospital each week. Therefore, he gets a new doctor every Monday. That being said, he had a new doctor today. For some reason, the doctor he had today will only be at the hospital for two days. So on Wednesday, he gets another doctor that will be at his hospital for 12 days. Easy to understand, right?

Now that you're as confused as we are, here's the update. Today, Gaines' doctor decided to let the new doctor on Wednesday decide whether or not to wean his flow from 3 liters. She did reduce his lasix from 3 doses per day to only 2 doses. She did this based on his progress and labs from this morning. Other than that, pretty much everything is the same. His oxygen is at 48% and he weighs 8 pounds 11 ounces.

For those keeping tabs (me), this is day #154 since Brittany's water broke and this journey began in DC and Gaines 116th day in the NICU. Please pray that Gaines continues to improve and gets to come home soon.

Beau

Sunday, August 16, 2009

Great Day for Gaines and Thoughts On Storms

Gaines has had a really good day today. We went by right after church and met my parents at the hospital. I could tell a big difference in how Gaines was breathing. He just seemed to be breathing so much easier and not as fast as yesterday. Each day he's gotten progressively (but slowly) better but I noticed a big difference in yesterday and today.

He was able to be weaned down to about 47-48% oxygen today and big news here...he took 38 ccs of his bottle! That's the best he's ever done. I am so proud of my little Gaines. He was also very alert and active this afternoon when I was there. I love seeing him like that. Everyday that goes by he is getting stronger and more alert and active. Oh, he's also 8 lbs 11 oz now. It took him almost 4 months but our little 3 pounder has a double chin.

When I was driving to the hospital today there was a huge dark gray cloud ahead of me. Behind me was a sunny sky but the storm ahead of me looked terrible. It made me think about how many times in our lives storms loom ahead of us. Behind us may be sunny skies and there may be nice weather on the other side, but to get to it, we've got to go through the storm. So many of us want to turn and run when we see the storm ahead of us but that won't get us anywhere. It will catch us eventually. The important thing is to be prepared for the storm so that we can go into it confident of weathering whatever life throws at us and coming out on the other side. The only way to be prepared for life's storms is to have your foundation built on God. Without that firm foundation, you'll crumble.

I don't mean to sound negative here but, be prepared...there are storms out there for each of you. People get cancer, tragic accidents take lives and babies aren't always born healthy. Put your faith in God. He will never let you down and will carry you through your storm just like He's doing for me. I'm including two of the verses of a song we sang in church this morning. They just really struck me because they are so true and something anyone in a storm can cling to.

Have faith in God when you pray'rs are unanswered
Your earnest plea He will never forget
Wait on the Lord, trust His Word and be patient
Have faith in God, He'll answer yet

Have faith in God in your pain and your sorrow
His heart is touched with your grief and despair
Cast all your cares and your burdens upon Him
And leave them there, oh, leave them there

I hope all of that speaks to someone out there that needed to "hear" it. It's just been on my mind since church last week and I've had this feeling all week that I needed to put it on here. My prayer is that someone out there sees God carrying us through this storm and starts to build or strengthen a relationship with Him.

Please keep Gaines in your prayers and remember to praise God for his progress...I sure am!

**See Beau's post below...he added a few pictures.

Love to all,

Brittany

Saturday, August 15, 2009

A Long Day

The day began early...4:40 AM. For some reason unknown to Brittany and me, Reed decided to wake up at 4:40. He wasn't scared or crying, he was just ready to start the day. After coaxing him back to bed for an hour, we started the day before 6:00.
Brittany went to visit Gaines early this morning. She arrived at the hospital before 8:00 AM. She spent more than and hour and a half with him. He is still at 50% oxygen and on 3 liters of flow. He seems to be breathing a little easier as each day passes. He now weighs 8 pounds 9 ounces.

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









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

Thursday, August 13, 2009

Monkey See, Monkey Do

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

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


video

Wednesday, August 12, 2009

Still holding on to 3 Liters

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

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

Beau

Tuesday, August 11, 2009

3 Liter Update

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

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

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

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

Love to all,

Brittany

Monday, August 10, 2009

Miffed

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

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

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

Love to all,

Brittany

Sunday, August 9, 2009

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

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

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

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

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Saturday, August 8, 2009

8 Pounds

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

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

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

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

Beau

Thursday, August 6, 2009

No News is Good News

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

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

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

Beau

Wednesday, August 5, 2009

More Progress

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

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

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

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

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

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

Love to all,

Brittany

Tuesday, August 4, 2009

Some Clarity

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

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

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

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

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

Monday, August 3, 2009

Progress and Confusion

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

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

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

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

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

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

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

Love to all,

Brittany

Sunday, August 2, 2009

A Good Weekend Comes to an End

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

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

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

Saturday, August 1, 2009

I could get used to this

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

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

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

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

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

Love to all,

Brittany

Slow and Steady Wins the Race

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

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

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