Brittany's last update on the boys was Tuesday night. We were fighting RSV, 4 infected ears and 2 infected eyes. We went to sleep Tuesday night prepared for the worst. The plan was for me to wake up at midnight to give Gaines a breathing treatment and for Brittany to wake up at 4 AM for another breathing treatment. We were also prepared to wake up to find Reed with his eyes matted shut.
Well, we both woke up at our designated times for the breathing treatments and were pleasantly surprised when Gaines slept through the night with very little coughing. Wednesday morning I immediately went to Reed's room so he wouldn't be scared when he couldn't open his eyes. I was shocked to find his eyes to be normal. I kept looking at him and asking to see his eyes...I was sure I was somehow missing something. I even asked him if his eyes hurt and he very quickly responded "No, they're feeling better".
Long story short...both boys are on the road to recovery. Reed acts as if he is fully recovered and Gaines is getting there. It will take Gaines a little while to get over the RSV but I think he is holding his own right now. It was amazing to go to bed Tuesday night fearing eye infections for one child and a possible hospital stay for the other...only to wake up Wednesday morning and for Reed to be well and Gaines to be much better. Sometimes the miracles in everyday life go unnoticed.
By the way, for those of you who like irony:
This journey started last March when Brittany went to Washington, DC on a 4 day business trip. I just found out that I will be leaving in March on a 5 day business trip to...Washington, DC. Weird.
Thursday, February 4, 2010
Tuesday, February 2, 2010
Four Infected Ears, Two Infected Eyes and a Case of RSV
First of all, let me just tell you that the four warm chocolate chip cookies (with milk!) that I'm eating right now are delicious and well deserved. It has been one heck of a day. I'll start from the beginning.
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
Thursday, January 28, 2010
Life This Week
Life this week has been a little on the rough side. I think Beau thinks I'm probably overstating things but I am just slap worn out. The nanny (who will now be referred to as Kristen. "Nanny" sounds a little pretentious to me...we are not "nanny" people) and I took Gaines to Birmingham for his pulmonologist appointment (more on that in a sec) on Monday and didn't get home until 7:00. This might not have been quite so bad if a large portion of the time from 4-7 had not been spent stuck on the interstate with my sweet angel "singing" in the back seat.
Beau went out of town Tuesday so I had the boys by myself Tuesday night, Wednesday morning and Wednesday night. Let me just say right now that Beau has me trapped. There is no way I could be a single parent. (That is obviously a joke about being trapped...sometimes I feel like I have to clarify my jokes on here...Beau and I are very happily married...99% of the time...another joke...I'm on a roll tonight...we are always happily married) ANYWAY...back to the point, the two nights were constant but doable...Wednesday morning killed me. I hadn't been so happy to see my desk chair since we got back from DC. Gaines' cold didn't help because it meant he had to have a breathing treatment first thing which means 30 minutes of me just sitting there with the nebulizer. In the mean time, my angel Reed climbs into my bed and has an accident. Awesome. Strip the bed, start the laundry...Oh, Jack has thrown up four times on my rug. Double awesome. I'll spare you the rest but suffice it to say, it was a long morning.
So, Thursday rolls around and Gaines' cold is in full force. I mean he's pitiful...not eating, wining, sleeping and I can tell that Kristen is worried about him so I leave work early (where I had plenty to be doing) and come home to check on him. Thankfully since the pulmonologist had just seen him he called in a steroid and antibiotic for him. I was so stressed and worried about him (he's really pretty sick) that I called Beau right at 5 and begged him to come home. He does and by the time he gets there, the little joker is all smiles and bouncing in his jumperoo. My only guess is that the Tylenol had kicked in (and yes I got permission to give it to him, I would have never just done it with all the other meds he's taking). So, being the total loser that I am, called my friend I was supposed to work out with and begged out of it. I really did (and still do) have a terrible headache...I'm typing through the pain. Your welcome.
So, now that I've filled you in on way too much of my week...Gaines' appointment. Gaines had a great appointment! He was a touch sick but I think the doctor was able to tell that he's improving. So much so that after this cold, we are going to try and turn his oxygen down to 3/4 liters! Now, I'm trying not to get too excited because he may not be able to handle it but at least the doctor thinks its worth trying. Also, after about a week of that, we are to get some blood work done and if that looks good we can cut back on the Lasix to .25 mL. So, please say a prayer that all will go well and that he'll be on less oxygen and medicine soon. He also said that if his weight gain and labs look good when we go back in 2 months, we can come up with a plan to start really weaning oxygen and meds! AND he reconfirmed my hope of Gaines being off oxygen by June...at least during the day. I'm so trying not to get my hopes up about it (Beau thinks it will take longer) but wouldn't that be awesome? Also, we are increasing the volume of his bottles in an effort to help his weight gain...it was good this time but not quite what we'd love. I was not surprised being as it is next to impossible to go 24 hours without some sort of spit up. We did however just up one of his reflux meds so maybe that will help.
Just a side note, I normally hate saying things like meds instead of medicines (don't even get me started on AC and OJ...I almost couldn't marry Beau over those two) but I've just given up on un-shortening things. I only have so much time in the day.
Oh, this is kind of funny. Reed finished his milk at dinner the other night and asked for water so I gave it to him. This was a night I was home alone with them so he was eating while I was tending to Gaines (I normally prefer family dinners but you do what you can when you're a single parent). I went back to check on Reed and he had spit water all down the front of his shirt. He looked at me and said, "I spit up".
Reed also likes to test his boundaries these days but I hadn't realized how much "discipline" he was getting until the other day I heard him talking to his truck. He said, "You do NOT do that. Do you need a 'pankin, truck? You go to timeout." He really is a sweet boy, just being two and trying to figure out what he can get away with.
I think that's about it for now. I'm tired. Please pray for our little Gaines and that he gets over this cold quickly and that he can handle 3/4 liters.
Love to all,
Brittany
Beau went out of town Tuesday so I had the boys by myself Tuesday night, Wednesday morning and Wednesday night. Let me just say right now that Beau has me trapped. There is no way I could be a single parent. (That is obviously a joke about being trapped...sometimes I feel like I have to clarify my jokes on here...Beau and I are very happily married...99% of the time...another joke...I'm on a roll tonight...we are always happily married) ANYWAY...back to the point, the two nights were constant but doable...Wednesday morning killed me. I hadn't been so happy to see my desk chair since we got back from DC. Gaines' cold didn't help because it meant he had to have a breathing treatment first thing which means 30 minutes of me just sitting there with the nebulizer. In the mean time, my angel Reed climbs into my bed and has an accident. Awesome. Strip the bed, start the laundry...Oh, Jack has thrown up four times on my rug. Double awesome. I'll spare you the rest but suffice it to say, it was a long morning.
So, Thursday rolls around and Gaines' cold is in full force. I mean he's pitiful...not eating, wining, sleeping and I can tell that Kristen is worried about him so I leave work early (where I had plenty to be doing) and come home to check on him. Thankfully since the pulmonologist had just seen him he called in a steroid and antibiotic for him. I was so stressed and worried about him (he's really pretty sick) that I called Beau right at 5 and begged him to come home. He does and by the time he gets there, the little joker is all smiles and bouncing in his jumperoo. My only guess is that the Tylenol had kicked in (and yes I got permission to give it to him, I would have never just done it with all the other meds he's taking). So, being the total loser that I am, called my friend I was supposed to work out with and begged out of it. I really did (and still do) have a terrible headache...I'm typing through the pain. Your welcome.
So, now that I've filled you in on way too much of my week...Gaines' appointment. Gaines had a great appointment! He was a touch sick but I think the doctor was able to tell that he's improving. So much so that after this cold, we are going to try and turn his oxygen down to 3/4 liters! Now, I'm trying not to get too excited because he may not be able to handle it but at least the doctor thinks its worth trying. Also, after about a week of that, we are to get some blood work done and if that looks good we can cut back on the Lasix to .25 mL. So, please say a prayer that all will go well and that he'll be on less oxygen and medicine soon. He also said that if his weight gain and labs look good when we go back in 2 months, we can come up with a plan to start really weaning oxygen and meds! AND he reconfirmed my hope of Gaines being off oxygen by June...at least during the day. I'm so trying not to get my hopes up about it (Beau thinks it will take longer) but wouldn't that be awesome? Also, we are increasing the volume of his bottles in an effort to help his weight gain...it was good this time but not quite what we'd love. I was not surprised being as it is next to impossible to go 24 hours without some sort of spit up. We did however just up one of his reflux meds so maybe that will help.
Just a side note, I normally hate saying things like meds instead of medicines (don't even get me started on AC and OJ...I almost couldn't marry Beau over those two) but I've just given up on un-shortening things. I only have so much time in the day.
Oh, this is kind of funny. Reed finished his milk at dinner the other night and asked for water so I gave it to him. This was a night I was home alone with them so he was eating while I was tending to Gaines (I normally prefer family dinners but you do what you can when you're a single parent). I went back to check on Reed and he had spit water all down the front of his shirt. He looked at me and said, "I spit up".
Reed also likes to test his boundaries these days but I hadn't realized how much "discipline" he was getting until the other day I heard him talking to his truck. He said, "You do NOT do that. Do you need a 'pankin, truck? You go to timeout." He really is a sweet boy, just being two and trying to figure out what he can get away with.
I think that's about it for now. I'm tired. Please pray for our little Gaines and that he gets over this cold quickly and that he can handle 3/4 liters.
Love to all,
Brittany
Saturday, January 23, 2010
Two New Videos
Reed has learned his ABC's and Gaines' physical therapist said it was okay for him to use his jumperoo...He loves it.
Tuesday, January 19, 2010
PT Report
Good Morning! Just a quick post during breakfast to update on Gaines' physical therapy appointment yesterday. By the way, how awesome is it that the therapist comes to our house?
Gaines got a good report yesterday. She was very pleased with his sitting up while propped on his hands. I think he's getting better with that everyday. You can really tell his trunk is getting stronger. Hopefully in the next few weeks he won't need to prop on his hands and will be able to sit straight up playing with a toy.
His legs are still improving but are still not there yet. There is still some tightness in his hamstrings. So, I'm asking for that specific prayer request. Please pray that at his next appointment in a few weeks, his hamstrings are not as tight. So far Gaines has overcome every obstacle he's had and I pray that this will be the case with this.
He was also approved to use his jumperoo. They are controversial among physical therapists but she felt like the pros outweighed the cons for Gaines. He loves it. It took him a little while to figure it out but now he's jumping like an old pro. I'll see if I can get my technical assistant to post the video soon.
Also, please pray that Gaines avoids Reed's cold. Reed has a pretty good cough and runny nose that I'm hoping we can keep Gaines from catching.
I'm off to the shower.
Love to all,
Brittany
Gaines got a good report yesterday. She was very pleased with his sitting up while propped on his hands. I think he's getting better with that everyday. You can really tell his trunk is getting stronger. Hopefully in the next few weeks he won't need to prop on his hands and will be able to sit straight up playing with a toy.
His legs are still improving but are still not there yet. There is still some tightness in his hamstrings. So, I'm asking for that specific prayer request. Please pray that at his next appointment in a few weeks, his hamstrings are not as tight. So far Gaines has overcome every obstacle he's had and I pray that this will be the case with this.
He was also approved to use his jumperoo. They are controversial among physical therapists but she felt like the pros outweighed the cons for Gaines. He loves it. It took him a little while to figure it out but now he's jumping like an old pro. I'll see if I can get my technical assistant to post the video soon.
Also, please pray that Gaines avoids Reed's cold. Reed has a pretty good cough and runny nose that I'm hoping we can keep Gaines from catching.
I'm off to the shower.
Love to all,
Brittany
Monday, January 11, 2010
Priceless Video
Brittany and I were in the kitchen making dinner when we heard Reed "reading" one of his books. We peeked around the corner and couldn't believe what we saw. He was reading to Gaines.
Sitting Up!
Just a quick post to let you all know that Gaines sat by himself in the floor yesterday (propped on his hands) for a full minute. The first time was 15 seconds, then 30, then a full minute. I'm so proud of him and just wanted to share. If you haven't read in awhile, there is a post from Saturday below.
Love to all,
Brittany
Love to all,
Brittany
Saturday, January 9, 2010
Endurance
Well we are in a new year. The holidays are over and we are busy getting focused on a new year. I PRAY that 2010 is better than 2009. I feel a little weird saying that because a lot of good things happened to us in 2009 but it was definitely a tough year for us.
As of now, 2010 is looking promising. Right now I'm sitting in the den floor watching Gaines actually play in his exersaucer. He can spin himself around and fiddles with all the little toys in front of him. It's progress for Gaines and that makes me happy. Beau and Reed are out buying a little bookshelf for Reed so he'll now have a place for all of his books. When your mother is a librarian, your child ends up with a lot of books. Its great because Reed loves to read and now we'll actually have a place for all of them.
In honor of it being a new year (albeit 9 days in) I thought I'd talk about what I'm working on as my new year's resolution. I'm working on my patience (among other things) but patience is definitely number one. A week or two ago I was really struggling with being patient...particularly with Gaines and particularly with his reflux. I'm sure it was combined with a lot of other things but I've just been so concerned about it and I get frustrated because there is nothing that I can do to fix it. Now, I 100% know that it is terrible for me to get upset with him because I know he can't help it but when you are cleaning up vomit (sorry to be gross but that's what it was) for the second night in a row...for the second time that night (and I'm talking middle of the night, sheets and pajamas changed, everything...twice) you tend to get a little annoyed with your child, no matter how much you love them...and I promise I do love him.
Anyway, it hit me that night as I flung myself in the floor crying and feeling so sorry for myself (yes, myself and not the poor baby with throw up in his hair...I know, no criticism needed..I'm terrible) that maybe I could use a little more patience. And maybe that I should be praying for it, and maybe I might should just be praying a little more anyway, and maybe being more diligent about reading my Bible and spending time with God. Crazy concept, huh?
Anyway, I know most of you don't visit this blog for my crazy ramblings so here is the update on the boys. Gaines' reflux does seem to be getting some better. It's not totally gone but its improving...some. We have finally changed his formula to Alimentum as per his nutritionist. It's a hypoallergenic formula (which PS, smells like what a cheese flavored dog food might smell like) and as soon as I realized that, a light bulb went off in my head. Beau was allergic to cow's milk when he was younger and Gaines has been on cow's milk based formulas. I don't know that Gaines is allergic too since the formula change hasn't been an instant fix but I do think its helping. Also, I read a while back that babies with Chronic Lung Disease have a higher instance of reflux because they have to breath so much harder and it stretches (I'm paraphrasing of course) that muscle at the bottom of the esophagus that is supposed to keep food in the stomach.
But anyway, the other Gaines news is that he thinks Reed is hilarious. If Reed is in the room, Gaines is watching him and usually laughing at him. His hair is growing in and he looks to me, just like Reed did. It's weird how much they look alike. He loves to stand up with you holding his hands and his therapist was very impressed with that. The hamstrings still have a little way to go but are progressing. The goal we are working on now is sitting up. It's just hard to work on that because we are so careful with him for fear of him spitting up. The spitting up got pretty bad and he lost a good bit of weight. I'm hoping that he's back on track now.
Reed moved up to a new class this past week at school...probably because he's so advanced (or maybe because he was one of the oldest and they needed his spot...and it wasn't just him that moved up but I like to go with advanced). He's doing really well in the new class which I'm happy about. I was a little worried because now he's the youngest with a lot of bigger kids and he's had a hard time adjusting to new classes in the past but he seems to be doing great. This class really focuses on potty training and I can already tell a big difference. I'd say he's gone from about 85% there to 90%. He still needs to work on telling us when he needs to go although that is improving and we haven't attempted naps or nighttime yet at all. I'm not complaining one bit though...the amount we spend on diapers has dropped dramatically.
Reed is so funny these days. He talks like a grown up and at the grocery store this morning he said, "Your doing awesome mama, your doing a great job." Is that funny or do I just have a false sense of how hilarious my child is? I'm going with funny. It's crazy that I have one of the smartest, cutest and funniest children around. That is a joke...I know I'm totally biased. And I haven't forgotten about Gaines. He's absolutely beautiful. Sorry, but he is. I'm so lucky to have this family. I think it would be hilarious to read a post that I might type at about 7:35 a.m. as we are struggling to get out the door and neither child wants to cooperate. I know for sure that that post would be a far cry from this one.
Speaking of Suzy-Sunshine, I read something in a little devotion book the other day that really stuck with me given our last year. It was about endurance. I'm about to plagiarize it but maybe it might stick with some else that's had a rough year.
"As you know, we considered blessed those who have persevered. You have heard of Job's perseverance and seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11
Endurance in faith, hard as it may seem, brings happiness. Trials are not a sign of God's disfavor or his will to carelessly punish his children. The tenderhearted Savior never acts cruelly. But through troubles, we draw close to Him and see God's power at work in our lives. Then, like Job, When we persevere in faith, God rewards us bountifully.
If you have any doubt that that is true, just look at my life.
Happy New Year to all...I'm off to organize toys and outgrown clothes. Don't be jealous.
Love to all,
Brittany
As of now, 2010 is looking promising. Right now I'm sitting in the den floor watching Gaines actually play in his exersaucer. He can spin himself around and fiddles with all the little toys in front of him. It's progress for Gaines and that makes me happy. Beau and Reed are out buying a little bookshelf for Reed so he'll now have a place for all of his books. When your mother is a librarian, your child ends up with a lot of books. Its great because Reed loves to read and now we'll actually have a place for all of them.
In honor of it being a new year (albeit 9 days in) I thought I'd talk about what I'm working on as my new year's resolution. I'm working on my patience (among other things) but patience is definitely number one. A week or two ago I was really struggling with being patient...particularly with Gaines and particularly with his reflux. I'm sure it was combined with a lot of other things but I've just been so concerned about it and I get frustrated because there is nothing that I can do to fix it. Now, I 100% know that it is terrible for me to get upset with him because I know he can't help it but when you are cleaning up vomit (sorry to be gross but that's what it was) for the second night in a row...for the second time that night (and I'm talking middle of the night, sheets and pajamas changed, everything...twice) you tend to get a little annoyed with your child, no matter how much you love them...and I promise I do love him.
Anyway, it hit me that night as I flung myself in the floor crying and feeling so sorry for myself (yes, myself and not the poor baby with throw up in his hair...I know, no criticism needed..I'm terrible) that maybe I could use a little more patience. And maybe that I should be praying for it, and maybe I might should just be praying a little more anyway, and maybe being more diligent about reading my Bible and spending time with God. Crazy concept, huh?
Anyway, I know most of you don't visit this blog for my crazy ramblings so here is the update on the boys. Gaines' reflux does seem to be getting some better. It's not totally gone but its improving...some. We have finally changed his formula to Alimentum as per his nutritionist. It's a hypoallergenic formula (which PS, smells like what a cheese flavored dog food might smell like) and as soon as I realized that, a light bulb went off in my head. Beau was allergic to cow's milk when he was younger and Gaines has been on cow's milk based formulas. I don't know that Gaines is allergic too since the formula change hasn't been an instant fix but I do think its helping. Also, I read a while back that babies with Chronic Lung Disease have a higher instance of reflux because they have to breath so much harder and it stretches (I'm paraphrasing of course) that muscle at the bottom of the esophagus that is supposed to keep food in the stomach.
But anyway, the other Gaines news is that he thinks Reed is hilarious. If Reed is in the room, Gaines is watching him and usually laughing at him. His hair is growing in and he looks to me, just like Reed did. It's weird how much they look alike. He loves to stand up with you holding his hands and his therapist was very impressed with that. The hamstrings still have a little way to go but are progressing. The goal we are working on now is sitting up. It's just hard to work on that because we are so careful with him for fear of him spitting up. The spitting up got pretty bad and he lost a good bit of weight. I'm hoping that he's back on track now.
Reed moved up to a new class this past week at school...probably because he's so advanced (or maybe because he was one of the oldest and they needed his spot...and it wasn't just him that moved up but I like to go with advanced). He's doing really well in the new class which I'm happy about. I was a little worried because now he's the youngest with a lot of bigger kids and he's had a hard time adjusting to new classes in the past but he seems to be doing great. This class really focuses on potty training and I can already tell a big difference. I'd say he's gone from about 85% there to 90%. He still needs to work on telling us when he needs to go although that is improving and we haven't attempted naps or nighttime yet at all. I'm not complaining one bit though...the amount we spend on diapers has dropped dramatically.
Reed is so funny these days. He talks like a grown up and at the grocery store this morning he said, "Your doing awesome mama, your doing a great job." Is that funny or do I just have a false sense of how hilarious my child is? I'm going with funny. It's crazy that I have one of the smartest, cutest and funniest children around. That is a joke...I know I'm totally biased. And I haven't forgotten about Gaines. He's absolutely beautiful. Sorry, but he is. I'm so lucky to have this family. I think it would be hilarious to read a post that I might type at about 7:35 a.m. as we are struggling to get out the door and neither child wants to cooperate. I know for sure that that post would be a far cry from this one.
Speaking of Suzy-Sunshine, I read something in a little devotion book the other day that really stuck with me given our last year. It was about endurance. I'm about to plagiarize it but maybe it might stick with some else that's had a rough year.
"As you know, we considered blessed those who have persevered. You have heard of Job's perseverance and seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11
Endurance in faith, hard as it may seem, brings happiness. Trials are not a sign of God's disfavor or his will to carelessly punish his children. The tenderhearted Savior never acts cruelly. But through troubles, we draw close to Him and see God's power at work in our lives. Then, like Job, When we persevere in faith, God rewards us bountifully.
If you have any doubt that that is true, just look at my life.
Happy New Year to all...I'm off to organize toys and outgrown clothes. Don't be jealous.
Love to all,
Brittany
Saturday, December 26, 2009
Christmas Recap
I hope you all had a Merry Christmas. We sure did. We started out the day seeing what Santa brought the boys. I'd say from the looks of things, Santa is a sucker for these two boys. Reed got the "horsey" that he'd been telling us Santa was bringing him. Santa was not planning to bring the "horsey" until the last minute because Reed is really too big for it but he caved two days before Christmas fearing that his parents' would hear, "What about my horsey?" if it wasn't here.
Quick side note, I just got interuppted from typing this because Reed TOLD me he needed to go potty and he did! That's big. He's been doing great with it but the hold back has been him telling us. He told Beau the other day at Publix that he needed to go too. Maybe we are on track to be 100% trained soon. Awesome way to start the day. I would have NEVER in a million years guessed I'd be so excited about this kind of stuff. If it means less diaper changing (and purchasing) I'm all for it.
Anyway, we had a great Christmas. After a super delicious breakfast (if I do say so myself) we read the Christmas story in Luke, opened presents from my parents and both boys got even more spoiled. Their aunt Abby (with no children) got Reed a scooter. Yes, you read that correctly. He's two with a red Radio Flyer scooter. In her defense it said ages two to five but I am really looking forward to Aunt Abby having children of her own one day.
Gaines wasn't super into it because he's still too little but I can't wait until next year...it will be twice the fun. He got some good stuff too. Santa brought him a jumperoo (that may or may not have been previously owned by his brother...is that tacky? I mean we had it, should we have bought a whole new one? Buying for second kids is hard because you already have so much stuff.) Anyway, he really seemed to like it but we are sticking with the exersaucer until his therapist approves him using it. She doesn't want us using anything that would have him on his tip toes so she wants to see him in it before he uses it much. We are sticking with the exersaucer for now and he is still doing awesome in it.
Speaking of awesome, the other day when my parents were bringing all of their presents in our house, Reed said, "Mama, this is awesome." I didn't know he knew the word awesome.
On another yet sort of related topic, I have been fighting a toy invasion with every thing I've got. I was never going to be one of those people with toys all over my house. My children were going to keep their toys in their room and we'd have decor friendly storage options for the few that I let them keep in the den. We hung a bulletin board in Reed's room for all of the artwork he did at school. I'd keep one particularly nice or seasonably appropriate piece on the fridge, but I was not going to one of those people with all kinds of junk all over their refridgerator. I surrendered yesterday when Reed's alphabet letters took up residence there. I just do not have the will to fight anymore. Guess that makes me a mother. I'd say its worth it.
Ok...Better run. Reed and I are headed to Andalusia today to visit with some of my extended family. Crazy, I haven't been home since March. Beau always tells me that Montgomery is my home now and yes it is, but Andalusia will always be my home too.
Thanks to all of the comments about the reflux. It is so helpful to know that we are not the only people dealing with this. It hasn't been a huge deal other than being super frustrating but he lost weight last week for the first time. I'm sure part of it is him being more active but the other part has got to be him eating less and spitting up more. Please keep this in your prayers.
If you have read in more than a week or so, there is a new-ish post below.
Love to all.
Brittany
Quick side note, I just got interuppted from typing this because Reed TOLD me he needed to go potty and he did! That's big. He's been doing great with it but the hold back has been him telling us. He told Beau the other day at Publix that he needed to go too. Maybe we are on track to be 100% trained soon. Awesome way to start the day. I would have NEVER in a million years guessed I'd be so excited about this kind of stuff. If it means less diaper changing (and purchasing) I'm all for it.
Anyway, we had a great Christmas. After a super delicious breakfast (if I do say so myself) we read the Christmas story in Luke, opened presents from my parents and both boys got even more spoiled. Their aunt Abby (with no children) got Reed a scooter. Yes, you read that correctly. He's two with a red Radio Flyer scooter. In her defense it said ages two to five but I am really looking forward to Aunt Abby having children of her own one day.
Gaines wasn't super into it because he's still too little but I can't wait until next year...it will be twice the fun. He got some good stuff too. Santa brought him a jumperoo (that may or may not have been previously owned by his brother...is that tacky? I mean we had it, should we have bought a whole new one? Buying for second kids is hard because you already have so much stuff.) Anyway, he really seemed to like it but we are sticking with the exersaucer until his therapist approves him using it. She doesn't want us using anything that would have him on his tip toes so she wants to see him in it before he uses it much. We are sticking with the exersaucer for now and he is still doing awesome in it.
Speaking of awesome, the other day when my parents were bringing all of their presents in our house, Reed said, "Mama, this is awesome." I didn't know he knew the word awesome.
On another yet sort of related topic, I have been fighting a toy invasion with every thing I've got. I was never going to be one of those people with toys all over my house. My children were going to keep their toys in their room and we'd have decor friendly storage options for the few that I let them keep in the den. We hung a bulletin board in Reed's room for all of the artwork he did at school. I'd keep one particularly nice or seasonably appropriate piece on the fridge, but I was not going to one of those people with all kinds of junk all over their refridgerator. I surrendered yesterday when Reed's alphabet letters took up residence there. I just do not have the will to fight anymore. Guess that makes me a mother. I'd say its worth it.
Ok...Better run. Reed and I are headed to Andalusia today to visit with some of my extended family. Crazy, I haven't been home since March. Beau always tells me that Montgomery is my home now and yes it is, but Andalusia will always be my home too.
Thanks to all of the comments about the reflux. It is so helpful to know that we are not the only people dealing with this. It hasn't been a huge deal other than being super frustrating but he lost weight last week for the first time. I'm sure part of it is him being more active but the other part has got to be him eating less and spitting up more. Please keep this in your prayers.
If you have read in more than a week or so, there is a new-ish post below.
Love to all.
Brittany
Monday, December 21, 2009
Brothers
Hello world. I'm back. I've set aside time tonight to type up a good blog...we'll see how it goes. I started a post yesterday morning while Reed and Beau were getting ready for church (Beau's turn to go) and then life happened...Reed managed to have two accidents (potty training) and Gaines had a major spit up. Doesn't seem like much now that I type it but Gaines' reflux is back and as strong as it ever was so I was (and still am) super frustrated about that. Also, I had just taken Reed to the bathroom and he swore he didn't have to go...he lied. I tend to be a little over dramatic at times (which probably comes as a suprise to people who know me well) so in the midst of all this, I pick up Reed's plastic plate from his high chair and kind of toss (or threw) it into the kitchen sink. Of course I missed and the mandarin oranges that he chose not to eat that morning went every where and I had to scrape oranges off the backsplash for fifteen minutes.
Anyway, I scratched that blog because no one would have wanted to read what I would have had to say after all of that...and there is really no telling what I might have typed. Like I said, Gaines' reflux is back and I just get so frustrated over it...angry almost which I know is terrible because I know he can't help it. It's just that he was over it. I mean, he was good for a whole month. I have no idea what triggered it again or what to do to fix it. We've already upped his Prevacid another mL and its not helping. He's going to the doctor tomorrow to get checked for ear infections etc. I'm afraid if we don't get this cleared up soon we are going to end up in some specialist's office. I hope I'm over exaggerating.
The good news is that Gaines started baby food this weekend. He's had squash the last three nights and will have sweet potatoes tomorrow. I'm hoping that the move towards solid-ish foods will help things stay down. He's also doing really well in his exersaucer these days. He was in there last night while we were eating dinner and he was playing with some of the toys and standing up...putting weight on his legs. He actually looked like he was jumping a couple of times.
Let's see...what else? His therapist has us working on strengthening his arms to get him ready for sitting up and crawling. We also work with him on an exercise ball (which is a workout for me too...my arms are going to be so toned) to help strengthen his core muscles. Tonight I was able to get him to sit with his hands on the floor propping himself up for a few seconds. He couldn't have done that last week. It is so good to see him making good progress. He's getting stronger everyday. Hopefully he'll be sitting up on his own very soon.
We are hoping that Santa brings him a jumperoo for Christmas. I think he'd probably really enjoy it. I can really tell a difference in his hamstrings. They are really loosening up. The therapist thinks the exersaucer is really helping his legs. Yay! God is answering our prayers for Gaines and while I'd rather Gaines be a boring old baby that I didn't have to worry about, it's exciting to watch what He's doing.
Reed has been doing well too. Despite yesterday's accidents, he's doing really well with the potty training. I'd say he's about 85% there. He's also gotten big on manners lately. I push the please, thank you and yes mam type things but I asked him something the other day and got a "No thank you". I about fell out. I'm guessing they are pushing manners at school right now. I'll take it. "No thank you" is a lot nicer than the "No way!" I was getting.
Santa came to Reed's school last week and he got to wear his pajamas for Polar Express day last Friday. He really loves his school and all of his friends and teachers. He's into all things transportation these days...trucks, school bus, choo choo "rain". This morning on the way to school we passed an older man riding a motorized scooter type wheel chair. I noticed it because it was kind of weird. We just don't see that everyday and he wasn't really riding on a side walk...more like main road...on a Rascal type thing. The next thing I knew, Reed said, "Look mama, motorcycle. Motorcycle, mama". I about died. That boy cracks me up.
Oh, the best thing happened this afternoon. I was feeding Gaines his squash and Reed asked if he could help. He sat in my lap and after every couple of my scoops I got a "What about my turn mama?" So, I let Reed have a few turns. After a couple of spoon jabs to the back of the throat, he got the hang of it...sort of. I actually heard him say, "Open your mouth baby".
Gaines is into making the "Pththtthfff" sound with his mouth (which I think I did a decent job of spelling by the way) lately and he did it once with squash in his mouth. Reed thought it was hilarious and did it back...so then Gaines did it back...and then Reed and so on. They were both laughing at each other and I was loving it. I think I got my first taste of life with two boys. Brothers...I love it.
In other news, Gaines' sweet nanny will be leaving us in a month (which we knew when we hired her). We are so sad to see her go and I know that we'll have the toughest time finding someone to replace her but we are on the nanny hunt again. Keep us in your prayers. It's really important to us to find the right person to take care of our little Gaines.
I think that's about it for now. Please keep Gaines in your prayers. Please pray for his continued progress and for this stupid reflux to go away for good.
Love to all,
Brittany
Anyway, I scratched that blog because no one would have wanted to read what I would have had to say after all of that...and there is really no telling what I might have typed. Like I said, Gaines' reflux is back and I just get so frustrated over it...angry almost which I know is terrible because I know he can't help it. It's just that he was over it. I mean, he was good for a whole month. I have no idea what triggered it again or what to do to fix it. We've already upped his Prevacid another mL and its not helping. He's going to the doctor tomorrow to get checked for ear infections etc. I'm afraid if we don't get this cleared up soon we are going to end up in some specialist's office. I hope I'm over exaggerating.
The good news is that Gaines started baby food this weekend. He's had squash the last three nights and will have sweet potatoes tomorrow. I'm hoping that the move towards solid-ish foods will help things stay down. He's also doing really well in his exersaucer these days. He was in there last night while we were eating dinner and he was playing with some of the toys and standing up...putting weight on his legs. He actually looked like he was jumping a couple of times.
Let's see...what else? His therapist has us working on strengthening his arms to get him ready for sitting up and crawling. We also work with him on an exercise ball (which is a workout for me too...my arms are going to be so toned) to help strengthen his core muscles. Tonight I was able to get him to sit with his hands on the floor propping himself up for a few seconds. He couldn't have done that last week. It is so good to see him making good progress. He's getting stronger everyday. Hopefully he'll be sitting up on his own very soon.
We are hoping that Santa brings him a jumperoo for Christmas. I think he'd probably really enjoy it. I can really tell a difference in his hamstrings. They are really loosening up. The therapist thinks the exersaucer is really helping his legs. Yay! God is answering our prayers for Gaines and while I'd rather Gaines be a boring old baby that I didn't have to worry about, it's exciting to watch what He's doing.
Reed has been doing well too. Despite yesterday's accidents, he's doing really well with the potty training. I'd say he's about 85% there. He's also gotten big on manners lately. I push the please, thank you and yes mam type things but I asked him something the other day and got a "No thank you". I about fell out. I'm guessing they are pushing manners at school right now. I'll take it. "No thank you" is a lot nicer than the "No way!" I was getting.
Santa came to Reed's school last week and he got to wear his pajamas for Polar Express day last Friday. He really loves his school and all of his friends and teachers. He's into all things transportation these days...trucks, school bus, choo choo "rain". This morning on the way to school we passed an older man riding a motorized scooter type wheel chair. I noticed it because it was kind of weird. We just don't see that everyday and he wasn't really riding on a side walk...more like main road...on a Rascal type thing. The next thing I knew, Reed said, "Look mama, motorcycle. Motorcycle, mama". I about died. That boy cracks me up.
Oh, the best thing happened this afternoon. I was feeding Gaines his squash and Reed asked if he could help. He sat in my lap and after every couple of my scoops I got a "What about my turn mama?" So, I let Reed have a few turns. After a couple of spoon jabs to the back of the throat, he got the hang of it...sort of. I actually heard him say, "Open your mouth baby".
Gaines is into making the "Pththtthfff" sound with his mouth (which I think I did a decent job of spelling by the way) lately and he did it once with squash in his mouth. Reed thought it was hilarious and did it back...so then Gaines did it back...and then Reed and so on. They were both laughing at each other and I was loving it. I think I got my first taste of life with two boys. Brothers...I love it.
In other news, Gaines' sweet nanny will be leaving us in a month (which we knew when we hired her). We are so sad to see her go and I know that we'll have the toughest time finding someone to replace her but we are on the nanny hunt again. Keep us in your prayers. It's really important to us to find the right person to take care of our little Gaines.
I think that's about it for now. Please keep Gaines in your prayers. Please pray for his continued progress and for this stupid reflux to go away for good.
Love to all,
Brittany
Saturday, December 12, 2009
A Good Report and a Visit with Santa
Brittany took Gaines to his appointment on Friday and came back with a good report. He had several physical and medical evaluations (many of which he has pretty often anyway). He did have a cognitive evaluation, which is something he has never had before. He tested as a 6-month old. This is right on track for his adjusted age of 5 1/2 months. Praise God for another test with positive results.
On a different note, we took Reed to see Santa this morning. After visiting Santa, Reed went to an "arts and crafts" area and made a snowman. Below is picture of the "example" snowman and then a picture of the snowman Reed made.
On a different note, we took Reed to see Santa this morning. After visiting Santa, Reed went to an "arts and crafts" area and made a snowman. Below is picture of the "example" snowman and then a picture of the snowman Reed made.
Thursday, December 10, 2009
Two Good Reports
We've had two pieces of good news this week concerning Gaines. His physical therapist saw him Monday and while I wasn't able to be here, I spoke to her on the phone and she thinks that Gaines' hamstrings are not as tight! This is great news and I know that it is due to people praying for his little legs (and our constant stretching and massaging). We are still working on them just as hard but I feel like I can breathe a little easier this week.
Also, we had a follow-up appointment with the pediatric cardiologist this week. The report was that his heart is working great, and while his VSDs are still there (just two of them), the doctor fully expects them to be closed by the time he turns two. He doesn't need to go back to the cardiologist for a year. Great news.
Tomorrow we go to an appointment that the NICU doctors set up for us. Its kind of an assessment for high risk kids. From what I understand, he'll have several therapists looking at him and they will point us in the right direction of any other therapists or doctors that Gaines should be seeing. I really expect it to go well tomorrow (he's meeting all of his milestones right now), but I've mentioned before how having these therapists pick Gaines apart makes me nervous. Please pray that it goes well. I'll try and report back on this appointment soon.
We are looking forward to a weekend of Christmas activities around here. Beau's mom and dad are coming for the weekend so that we can take Reed to some things together. It should be really fun. He is just so much fun right now. The potty training is going very well and he is even wearing big boy underwear to school and around the house everyday.
I think that's about it for now. I'll try and updated some more later. I'm still kind of catching up around the house from being gone last weekend. Eventually I'm going to have to unpack and put away my suitcase.
Love to all,
Brittany
Also, we had a follow-up appointment with the pediatric cardiologist this week. The report was that his heart is working great, and while his VSDs are still there (just two of them), the doctor fully expects them to be closed by the time he turns two. He doesn't need to go back to the cardiologist for a year. Great news.
Tomorrow we go to an appointment that the NICU doctors set up for us. Its kind of an assessment for high risk kids. From what I understand, he'll have several therapists looking at him and they will point us in the right direction of any other therapists or doctors that Gaines should be seeing. I really expect it to go well tomorrow (he's meeting all of his milestones right now), but I've mentioned before how having these therapists pick Gaines apart makes me nervous. Please pray that it goes well. I'll try and report back on this appointment soon.
We are looking forward to a weekend of Christmas activities around here. Beau's mom and dad are coming for the weekend so that we can take Reed to some things together. It should be really fun. He is just so much fun right now. The potty training is going very well and he is even wearing big boy underwear to school and around the house everyday.
I think that's about it for now. I'll try and updated some more later. I'm still kind of catching up around the house from being gone last weekend. Eventually I'm going to have to unpack and put away my suitcase.
Love to all,
Brittany
Sunday, December 6, 2009
Good News!
Brittany has been out of town since Saturday morning and will not return until Tuesday afternoon. Fortunately, Brittany's parents took Reed for the weekend. The big news is that while Brittany and Reed have been gone, Gaines has figured out how to roll from his back to his tummy and how to stay upright in his exersaucer! These are two major milestones that are very good signs regarding his development. Just call me Super Dad.
Saturday, November 28, 2009
Angels
Brittany and I had a wonderful Thanksgiving. Normally we would either be with Brittany's extended family in Andalusia or with my family in Birmingham. This year we couldn't travel...so Thanksgiving was at our house. While we would have loved to have everyone visit, Gaines' recent battles with colds limited us to Brittany's parents, her sister and her sister's boyfriend. We had a very nice morning...Reed and Gaines enjoyed watching the Macy's parade on TV. Lunch was delicious and everyone left by early afternoon. Since Thanksgiving lunch was done, it was time to decorate for Christmas and turn on the Christmas music.
For any of you who know Brittany, you are probably well aware of her feelings towards celebrating Christmas before Thanksgiving. Needless to say, we are not allowed to "skip" holidays at our house. No Christmas music or decorations until after Thanksgiving lunch.
Well, since Thanksgiving lunch was over and it was just the four of us in the house, we decided to put up the tree and listen to Christmas music. One of the songs that came on the radio really touched us. Brittany and I both cried. I think we will fight back tears throughout the Christmas season whenever we hear this song.
The song sort of summed up our journey with Gaines. The past eight months have been the hardest of our lives. We have experienced every possible emotion. There were times we doubted we would make it through it...but, God knew otherwise. Our lives have been touched by so many people this past year, many of them strangers. Any way, the song says it better than I can.
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
There were so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
God has blessed Brittany and me with so many "angels" this past year...too many to mention. As I was listening to the song, I thought about all the times there were angels among us. If you have been following our story, we shared the many "God Things" that have happened during our journey. But I wonder how many times there were angels right there next to us. I wonder how many times Gaines looked up from his bed in the NICU and saw many more faces than just Brittany and me. I wonder how many angels comforted our son during his hospital stay. I wonder how many angels comforted Reed each night during the two months we were separated from him. Many times Brittany and I will look at each other and say "can you believe everything we've been through this year". This song just reminds us that we were not alone on this journey. God has used so many friends and strangers in our lives this past year to help us through this journey...and throughout this journey I'm confident we have had angels among us.
Beau
For any of you who know Brittany, you are probably well aware of her feelings towards celebrating Christmas before Thanksgiving. Needless to say, we are not allowed to "skip" holidays at our house. No Christmas music or decorations until after Thanksgiving lunch.
Well, since Thanksgiving lunch was over and it was just the four of us in the house, we decided to put up the tree and listen to Christmas music. One of the songs that came on the radio really touched us. Brittany and I both cried. I think we will fight back tears throughout the Christmas season whenever we hear this song.
The song sort of summed up our journey with Gaines. The past eight months have been the hardest of our lives. We have experienced every possible emotion. There were times we doubted we would make it through it...but, God knew otherwise. Our lives have been touched by so many people this past year, many of them strangers. Any way, the song says it better than I can.
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
There were so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
God has blessed Brittany and me with so many "angels" this past year...too many to mention. As I was listening to the song, I thought about all the times there were angels among us. If you have been following our story, we shared the many "God Things" that have happened during our journey. But I wonder how many times there were angels right there next to us. I wonder how many times Gaines looked up from his bed in the NICU and saw many more faces than just Brittany and me. I wonder how many angels comforted our son during his hospital stay. I wonder how many angels comforted Reed each night during the two months we were separated from him. Many times Brittany and I will look at each other and say "can you believe everything we've been through this year". This song just reminds us that we were not alone on this journey. God has used so many friends and strangers in our lives this past year to help us through this journey...and throughout this journey I'm confident we have had angels among us.
Beau
Monday, November 23, 2009
Thanksgiving
With Thanksgiving coming up, I wanted list many of the things I'm thankful for this year but first a quick update on Gaines. His appointment today went pretty well. Because of his cold it ended up being more of a sick appointment, but it went well. We've got a new medicine to add to every other albuterol treatment (can't remember what its called), steroids and an antibiotic prescription to fill if he's still not getting better in a few days. Hopefully that will get him over this cold and we can keep him healthy for the rest of cold and flu season.
The doctor wants us to cut his lasix back to a half ml a day once he gets good and healthy. We'll make that change in about a month. He doesn't want us to over do it. He was very pleased with his weight gain...14 lbs 3 oz. Gaines is now in the 25-50 percentile on weight and in the 50-75 percentile in height...for his adjusted age that is. This is great news. Also, I asked if my new goal of being off oxygen by June was a realistic goal and he thought it was. So, please pray for no oxygen by June. I really want to take both boys to the beach this summer and I'm just guessing that sand + oxygen tank = disaster.
Moving on...thankfulness. There are so many things that I'm thankful for this year. I think that maybe I have a heightened sense of thanksgiving this holiday season. We had our Thanksgiving program at work today and the pastor from my church gave a short Thanksgiving message (yes, a religious based Thanksgiving program at work...hard to believe but something I love about my company). He spoke about being thankful for all things, all the time...even when its not something you want to be thankful for. He mentioned various examples but the one that struck me was the example of when a doctor gives you some bad news...know that feeling!
How am I supposed to be thankful that my water broke at 24 weeks in Washington DC, 900 miles away from my 18 month old? How am I supposed to be thankful for the months and months of agonizing days in a NICU? The thing is that I don't have to be thankful for all of those things...I'm to be thankful that God has the power to take those awful circumstances and use them for His glory. Because of this extremely difficult time in my life, I have a relationship with Him like I never had before, I have so much more compassion for people in need, I have a stronger relationship with my husband, I appreciate so much more about the simple things of being a family...just to name a few.
This year I am thankful for:
My relationship with God and that the creator of the universe loves me and wants a relationship with me. How awesome is that?
My family all being under one roof. We could so easily be a family still running between home, work and hospital...or a family of three.
My parents. I cannot say enough. From many trips back and forth from DC, to dropping everything the moment we need them and EVERYTHING in between...I could not ask for better parents.
My extended family...all of them. Grandparents, sister, aunts, uncles, in-laws...I am so blessed to have in-laws who love me like their own...all good, bad and ugly of me. They have all supported us in so many ways...I'm including friends that we love like family in here.
My husband who has been my strength through everything. He is my best friend and the only one who truly understands how hard this has been, how rewarding it has been and how much effort goes into managing our new daily life.
Doctors and Nurses...all of them. The doctor who told me I was not going anywhere when I wanted out of DC, the OB nurses who became my friends, the DC NICU doctors and nurses who I credit (other than God and ALL of the prayers) with keeping Gaines on this earth. The doctors and nurses in Montgomery who saw us through the loooong process of getting Gaines ready for home. The pediatrician who prays over Gaines. So many people who are dear to my heart.
My church. I'm so thankful to have a church and Sunday School class who have gone above and beyond with their prayers and support for our family.
Terri (the nanny) who loves Gaines like her own. She has made my working so much easier than it could have been. Being 100% comfortable with your child's caretaker is no small thing...especially when your child is on oxygen and kind of a handful at times.
My company. My boss and co-workers for picking up my slack and for welcoming me back. Everyone at work that supported us while we were gone and everyone that still asks me how Gaines is doing. The leaders of my company who took time out of their busy schedules to visit us in DC and prayed for our family and Gaines.
Strangers. There are so many of you out there that I do not know and you faithfully read our story and offer your prayers. Amazing. Strangers that we lived with and forever have a place in our hearts.
Reed. Well obviously I love him (even with his haircut) but I'm so thankful of the joy that he has brought in our lives this past year. In a really tough year he has been constant joy.
Gaines. What can I say about that child? He has been the source of so many emotions in the last year. My heart has ached over him but its also been filled with joy as he's progressed. I have worried and agonized over him. I have prayed for him and praised God for him. He is certainly not easy by any means but I am so thankful for him. Ok, probably not quite as thankful as I should be at 3 in the morning when he has pulled his prongs out of this nose AGAIN but still thankful for those times.
I'm thankful for my sanity which I very easily could have lost by now.
I'm thankful for Diet Mountain Dew, Target, yellow mums in the fall, warm chocolate chip cookies with milk before bed, the fancy eyeliner my mom didn't want, the cheap lip gloss from Walgreen's, INSURANCE, Alabama's awesome football season, hair that will grow back (Reed's), clean sheets, vampire books, a dog that forgives me for abandoning him, stylish baskets to store toys in, pizza, how cute Reed is running around in his big boy underwear, remote controls, my dining room chandelier (I didn't choose it, I just lucked out), when the dishwasher is dirty, the foaming soaps from Bath and Body Works, monogrammed towels, good jeans and perfect long-sleeve (or short) white t-shirts.
I'm sure I'm forgetting a few things.
Love to all,
Brittany
The doctor wants us to cut his lasix back to a half ml a day once he gets good and healthy. We'll make that change in about a month. He doesn't want us to over do it. He was very pleased with his weight gain...14 lbs 3 oz. Gaines is now in the 25-50 percentile on weight and in the 50-75 percentile in height...for his adjusted age that is. This is great news. Also, I asked if my new goal of being off oxygen by June was a realistic goal and he thought it was. So, please pray for no oxygen by June. I really want to take both boys to the beach this summer and I'm just guessing that sand + oxygen tank = disaster.
Moving on...thankfulness. There are so many things that I'm thankful for this year. I think that maybe I have a heightened sense of thanksgiving this holiday season. We had our Thanksgiving program at work today and the pastor from my church gave a short Thanksgiving message (yes, a religious based Thanksgiving program at work...hard to believe but something I love about my company). He spoke about being thankful for all things, all the time...even when its not something you want to be thankful for. He mentioned various examples but the one that struck me was the example of when a doctor gives you some bad news...know that feeling!
How am I supposed to be thankful that my water broke at 24 weeks in Washington DC, 900 miles away from my 18 month old? How am I supposed to be thankful for the months and months of agonizing days in a NICU? The thing is that I don't have to be thankful for all of those things...I'm to be thankful that God has the power to take those awful circumstances and use them for His glory. Because of this extremely difficult time in my life, I have a relationship with Him like I never had before, I have so much more compassion for people in need, I have a stronger relationship with my husband, I appreciate so much more about the simple things of being a family...just to name a few.
This year I am thankful for:
My relationship with God and that the creator of the universe loves me and wants a relationship with me. How awesome is that?
My family all being under one roof. We could so easily be a family still running between home, work and hospital...or a family of three.
My parents. I cannot say enough. From many trips back and forth from DC, to dropping everything the moment we need them and EVERYTHING in between...I could not ask for better parents.
My extended family...all of them. Grandparents, sister, aunts, uncles, in-laws...I am so blessed to have in-laws who love me like their own...all good, bad and ugly of me. They have all supported us in so many ways...I'm including friends that we love like family in here.
My husband who has been my strength through everything. He is my best friend and the only one who truly understands how hard this has been, how rewarding it has been and how much effort goes into managing our new daily life.
Doctors and Nurses...all of them. The doctor who told me I was not going anywhere when I wanted out of DC, the OB nurses who became my friends, the DC NICU doctors and nurses who I credit (other than God and ALL of the prayers) with keeping Gaines on this earth. The doctors and nurses in Montgomery who saw us through the loooong process of getting Gaines ready for home. The pediatrician who prays over Gaines. So many people who are dear to my heart.
My church. I'm so thankful to have a church and Sunday School class who have gone above and beyond with their prayers and support for our family.
Terri (the nanny) who loves Gaines like her own. She has made my working so much easier than it could have been. Being 100% comfortable with your child's caretaker is no small thing...especially when your child is on oxygen and kind of a handful at times.
My company. My boss and co-workers for picking up my slack and for welcoming me back. Everyone at work that supported us while we were gone and everyone that still asks me how Gaines is doing. The leaders of my company who took time out of their busy schedules to visit us in DC and prayed for our family and Gaines.
Strangers. There are so many of you out there that I do not know and you faithfully read our story and offer your prayers. Amazing. Strangers that we lived with and forever have a place in our hearts.
Reed. Well obviously I love him (even with his haircut) but I'm so thankful of the joy that he has brought in our lives this past year. In a really tough year he has been constant joy.
Gaines. What can I say about that child? He has been the source of so many emotions in the last year. My heart has ached over him but its also been filled with joy as he's progressed. I have worried and agonized over him. I have prayed for him and praised God for him. He is certainly not easy by any means but I am so thankful for him. Ok, probably not quite as thankful as I should be at 3 in the morning when he has pulled his prongs out of this nose AGAIN but still thankful for those times.
I'm thankful for my sanity which I very easily could have lost by now.
I'm thankful for Diet Mountain Dew, Target, yellow mums in the fall, warm chocolate chip cookies with milk before bed, the fancy eyeliner my mom didn't want, the cheap lip gloss from Walgreen's, INSURANCE, Alabama's awesome football season, hair that will grow back (Reed's), clean sheets, vampire books, a dog that forgives me for abandoning him, stylish baskets to store toys in, pizza, how cute Reed is running around in his big boy underwear, remote controls, my dining room chandelier (I didn't choose it, I just lucked out), when the dishwasher is dirty, the foaming soaps from Bath and Body Works, monogrammed towels, good jeans and perfect long-sleeve (or short) white t-shirts.
I'm sure I'm forgetting a few things.
Love to all,
Brittany
Sunday, November 22, 2009
Prayer Request
Ok...this might get cut short. Both boys are asleep and there is no telling how much longer that will last. Just a quick prayer request for Gaines. His touch of a cold has gotten a good bit worse today. Our pediatrician just called him in some steroids and has increased the frequency of his albuterol, etc. The home health nurse should also be out soon to listen to his lungs. All week I've been sure that they were congested but Wednesday's nurse said they sounded clear and our doctor said on Friday that they were the best he's ever heard them. So...here's hoping I'm just over reacting. He goes to Children's Hospital tomorrow for a follow-up with his pulmonologist. Pray that I'm overreacting about this cold and that they don't keep us at Children's tomorrow.
Also, pray for Reed's hair to grow. He got the worst haircut of his life yesterday...right before the holidays. Ok, that one's a little petty but please keep Gaines in your prayers.
Love to all,
Brittany
Also, pray for Reed's hair to grow. He got the worst haircut of his life yesterday...right before the holidays. Ok, that one's a little petty but please keep Gaines in your prayers.
Love to all,
Brittany
Wednesday, November 18, 2009
PT Report
Gaines had physical therapy Monday morning and got a great report. His therapist was very pleased with the progress he's making. He even sat in his (borrowed...thanks Lauren) bumbo chair and held his head up some. One of his goals is by 6 months adjusted age, to be able to sit in that chair and hold his head up for one minute. That would mean around the first of the year and he is well on his way to doing it now. He can do it, we've just got to build up the length of time.
His therapist said that he had made significant progress in everything except the tightness in his hamstrings. So, that is the new prayer request....looser hamstrings. We are focusing on those specifically now. Truth be told, I had probably not been working with his legs as much as I should have because I was so focused on his head but we are now back on track with his stretches. We'd appreciate your prayers.
Everything else is going well. Both boys have a touch of a cold but right now we are managing without having to go to the doctor. Please pray that they will get over them quickly and we can avoid any doctor/hospital visits.
Got to run. Got to get ready for work. For those of you that haven't read since Saturday, there is another post below.
Love to all,
Brittany
His therapist said that he had made significant progress in everything except the tightness in his hamstrings. So, that is the new prayer request....looser hamstrings. We are focusing on those specifically now. Truth be told, I had probably not been working with his legs as much as I should have because I was so focused on his head but we are now back on track with his stretches. We'd appreciate your prayers.
Everything else is going well. Both boys have a touch of a cold but right now we are managing without having to go to the doctor. Please pray that they will get over them quickly and we can avoid any doctor/hospital visits.
Got to run. Got to get ready for work. For those of you that haven't read since Saturday, there is another post below.
Love to all,
Brittany
Saturday, November 14, 2009
MIA
So I've been MIA for awhile. I want to blog...I really do, ideas pass in and out of my head and I think, "Oh, I'll put that on the blog..." but then reality sets in and the day gets away from me. It's just that these two boys, a dog, a husband, a job, a house to keep clean, a family to feed, prescriptions to pick up, claims to file, doctor/therapy appointments to keep kind of come first. You know...life.
Anyway, I'll try and make up for the lack of posting with a good one here. Quality verses quantity I say. We've had another good week. I took both boys to the doctor on Friday because I was sure that Reed had an ear infection and I wasn't 100% sure that Gaines' ears were better. I love it when I waste time and money taking kids to the doctor to find out there is nothing wrong with them. Reed had been pulling on his ear for several days. His teachers mentioned it to me. If you asked him if his ear hurt he'd tell you yes. Friday he told me on the way to the doctor that the "doctor fix my ear". Come to find out, it wasn't an ear infection...he had an ant bite on his ear. Not inside of his ear, just the outside part. So yeah, I took him to the doctor for an ant bite. I'm going to have to inspect him closer the next time I think he needs to go. Not only did I look crazy, but I paid $30 to do so.
Gaines had healthy ears as well. Both of his ears had cleared up and the doctor thought his lungs sounded great. Our regular doctor was off that day so we saw his partner. He was asking about his oxygen and when I told him he was on one liter he thought we might be getting off oxygen soon. I told him probably not and explained that his lungs were pretty bad and gave him the short version of his medical history. But when I mentioned that he was on one liter he said something like, "But you have to turn him up at night right?" We don't...but it kind of got me thinking that even though his sats are great when he's asleep, maybe they are even better during the day. We don't usually pay attention to his sats when he's awake because the monitor just doesn't pick up great. We kind of figure if they are ok when he's asleep and still...he's fine. We confirmed that its ok to do this with the pulmonologist by the way...we didn't just make this up on our own and run with it. BUT...since this doctor said this and the pulmonologist made reference to the same thing (sats being lower when they sleep), it makes me wonder if he's pretty much satting 100 all day when he's awake? Sorry, that was a lot of rambling for that one little thought but there you go.
Moving on...Gaines weighed 14 pounds at the doctor the other day but I think that was pretty off. He should have been about 13-8 or so but he had on clothes, a diaper and had just had a bottle so I think that skewed things up a bit. Plus it was a different scale than he is usually weighed on.
The physical therapist comes back Monday so I'm interested to see what she thinks. I haven't really noticed any major changes in the last two weeks but its easier for her to see progress. He is still doing really well with his head. I'm not ready to check it off the list as completely mastered just yet, but its getting there.
I've tried to put him in his exersaucer a couple of times and he really wants no part of that right now. He is adjusted age 4 months right now...isn't that about the right time? It might just be that it bothers his hernia but my new goals are for him to be able to sit in his exersaucer and function in it and for him to roll from his back to stomach. I'm pretty sure Reed did it at about 5 months so that gives Gaines a good month to do it before I start freaking out. He is already rolling from his back to side which I take as a good thing.
I hope that those of you out there who have no reason to be concerned about their children's abilities, really, really appreciate that. I didn't really appreciate it with Reed but with Gaines...you just come to realize what a blessing healthy kids are. Like, I've been stressing over this head control thing and now that it seems that he's making progress on it, I'm watching other things. I don't know how to explain it other than to say that you just realize every little mechanism your body makes. Like how many little things you have to "get" to be a normal person. I'm not getting into what is and is not normal...you know what I mean. Like maybe you can control your head but your hand has problems or your legs. Or maybe you are physically ok but you can't control your tongue so you can't talk.
Don't get me wrong, no doctor has given us any reason to believe that any of those things could be a problem for Gaines (other than the leg possibility) but its hard not to get that sort of thing in your head when you watch a therapist dissect your child and his abilities. Little things like watching to see if he turns his hand over palm up, or making sure he has good open hands or asking if I notice him leaning to one side more often. I do the best I can not to worry but its tough.
Rambling...sorry.
Reed is still working on the potty training. He has great days and then sometimes he has nights like tonight when there were multiple accidents before I could even get the first one cleaned up. I'm not going to go into all the details of it but I'll be so frustrated with him at times but then he'll see the mess and say, "Oh no, Reed-Reed". Which of course to me, is hilarious.
Also, I've mentioned before about how advanced Reed is (says his mama) but this afternoon he did the whole Ring Around The Rosy deal. He knew all the words and danced around and then through himself in the floor. I was impressed. We don't really Ring Around The Rosy here much so I guess he got it at school.
So, I guess to sum it all up, we are all good here just doing everything we can to keep our heads above water but from what I understand, that's just life with kids. I'm off to bed. All is well with the world, my boys are asleep, Beau just walked in the door (he's been at a friends house tonight), my house is clean (perfectly clean for this one moment in time) and most of the laundry is done. I can sleep peacefully...as long as Gaines keeps his prongs in his nose. It's my turn with him tonight.
Love to all,
Brittany
Anyway, I'll try and make up for the lack of posting with a good one here. Quality verses quantity I say. We've had another good week. I took both boys to the doctor on Friday because I was sure that Reed had an ear infection and I wasn't 100% sure that Gaines' ears were better. I love it when I waste time and money taking kids to the doctor to find out there is nothing wrong with them. Reed had been pulling on his ear for several days. His teachers mentioned it to me. If you asked him if his ear hurt he'd tell you yes. Friday he told me on the way to the doctor that the "doctor fix my ear". Come to find out, it wasn't an ear infection...he had an ant bite on his ear. Not inside of his ear, just the outside part. So yeah, I took him to the doctor for an ant bite. I'm going to have to inspect him closer the next time I think he needs to go. Not only did I look crazy, but I paid $30 to do so.
Gaines had healthy ears as well. Both of his ears had cleared up and the doctor thought his lungs sounded great. Our regular doctor was off that day so we saw his partner. He was asking about his oxygen and when I told him he was on one liter he thought we might be getting off oxygen soon. I told him probably not and explained that his lungs were pretty bad and gave him the short version of his medical history. But when I mentioned that he was on one liter he said something like, "But you have to turn him up at night right?" We don't...but it kind of got me thinking that even though his sats are great when he's asleep, maybe they are even better during the day. We don't usually pay attention to his sats when he's awake because the monitor just doesn't pick up great. We kind of figure if they are ok when he's asleep and still...he's fine. We confirmed that its ok to do this with the pulmonologist by the way...we didn't just make this up on our own and run with it. BUT...since this doctor said this and the pulmonologist made reference to the same thing (sats being lower when they sleep), it makes me wonder if he's pretty much satting 100 all day when he's awake? Sorry, that was a lot of rambling for that one little thought but there you go.
Moving on...Gaines weighed 14 pounds at the doctor the other day but I think that was pretty off. He should have been about 13-8 or so but he had on clothes, a diaper and had just had a bottle so I think that skewed things up a bit. Plus it was a different scale than he is usually weighed on.
The physical therapist comes back Monday so I'm interested to see what she thinks. I haven't really noticed any major changes in the last two weeks but its easier for her to see progress. He is still doing really well with his head. I'm not ready to check it off the list as completely mastered just yet, but its getting there.
I've tried to put him in his exersaucer a couple of times and he really wants no part of that right now. He is adjusted age 4 months right now...isn't that about the right time? It might just be that it bothers his hernia but my new goals are for him to be able to sit in his exersaucer and function in it and for him to roll from his back to stomach. I'm pretty sure Reed did it at about 5 months so that gives Gaines a good month to do it before I start freaking out. He is already rolling from his back to side which I take as a good thing.
I hope that those of you out there who have no reason to be concerned about their children's abilities, really, really appreciate that. I didn't really appreciate it with Reed but with Gaines...you just come to realize what a blessing healthy kids are. Like, I've been stressing over this head control thing and now that it seems that he's making progress on it, I'm watching other things. I don't know how to explain it other than to say that you just realize every little mechanism your body makes. Like how many little things you have to "get" to be a normal person. I'm not getting into what is and is not normal...you know what I mean. Like maybe you can control your head but your hand has problems or your legs. Or maybe you are physically ok but you can't control your tongue so you can't talk.
Don't get me wrong, no doctor has given us any reason to believe that any of those things could be a problem for Gaines (other than the leg possibility) but its hard not to get that sort of thing in your head when you watch a therapist dissect your child and his abilities. Little things like watching to see if he turns his hand over palm up, or making sure he has good open hands or asking if I notice him leaning to one side more often. I do the best I can not to worry but its tough.
Rambling...sorry.
Reed is still working on the potty training. He has great days and then sometimes he has nights like tonight when there were multiple accidents before I could even get the first one cleaned up. I'm not going to go into all the details of it but I'll be so frustrated with him at times but then he'll see the mess and say, "Oh no, Reed-Reed". Which of course to me, is hilarious.
Also, I've mentioned before about how advanced Reed is (says his mama) but this afternoon he did the whole Ring Around The Rosy deal. He knew all the words and danced around and then through himself in the floor. I was impressed. We don't really Ring Around The Rosy here much so I guess he got it at school.
So, I guess to sum it all up, we are all good here just doing everything we can to keep our heads above water but from what I understand, that's just life with kids. I'm off to bed. All is well with the world, my boys are asleep, Beau just walked in the door (he's been at a friends house tonight), my house is clean (perfectly clean for this one moment in time) and most of the laundry is done. I can sleep peacefully...as long as Gaines keeps his prongs in his nose. It's my turn with him tonight.
Love to all,
Brittany
Sunday, November 8, 2009
Very Quick Update
Gaines is doing much better. He is almost completely over his cold. He was weighed on Friday and weighed in at a solid 13 pounds 0 ounces. Great news...the goal for Friday was 12 pounds 15 ounces. Below is video of Gaines playing with a few toys.
Thursday, November 5, 2009
Gaines Update
This is going to be quick. I'm trying to eat breakfast as I type this but I wanted to give a quick update on Gaines.
He is getting over his cold pretty well but we found out Monday that he has two ear infections which explains why he hasn't been quite himself the last few days. He hasn't really been irritable, just not as happy as usual. So, he is now on antibiotics on top of everything else.
I do have two good things to report. First, his reflux has gotten so much better. The last few days we have no spit-ups other than a few small ones that were the result of his coughing fits. He did spit up two good times yesterday so I hope that its not coming back but overall, much improved. Please keep praying for this because I think the improvement in this is related to the improvement in head control.
That's right, Gaines is doing so much better with his head. His therapist and I think it must be related to the reflux getting better. He did awesome with his head on Monday while his therapist was here but the last two days he hasn't done as well (better just not as well as Monday). I'm hoping that its just because of his ears bothering him and that as they get better, the head will too. Please keep up your prayers for this specific issue. The are really working...I can see improvement. I am so thankful to have so many people out there praying for our little Gaines.
Got to run. It's morning here which means mass chaos until we are in the car pulling out of the driveway.
Oh, and Reed is making progress with the potty training. We aren't there yet, but making improvement.
Love to all,
Brittany
He is getting over his cold pretty well but we found out Monday that he has two ear infections which explains why he hasn't been quite himself the last few days. He hasn't really been irritable, just not as happy as usual. So, he is now on antibiotics on top of everything else.
I do have two good things to report. First, his reflux has gotten so much better. The last few days we have no spit-ups other than a few small ones that were the result of his coughing fits. He did spit up two good times yesterday so I hope that its not coming back but overall, much improved. Please keep praying for this because I think the improvement in this is related to the improvement in head control.
That's right, Gaines is doing so much better with his head. His therapist and I think it must be related to the reflux getting better. He did awesome with his head on Monday while his therapist was here but the last two days he hasn't done as well (better just not as well as Monday). I'm hoping that its just because of his ears bothering him and that as they get better, the head will too. Please keep up your prayers for this specific issue. The are really working...I can see improvement. I am so thankful to have so many people out there praying for our little Gaines.
Got to run. It's morning here which means mass chaos until we are in the car pulling out of the driveway.
Oh, and Reed is making progress with the potty training. We aren't there yet, but making improvement.
Love to all,
Brittany
Sunday, November 1, 2009
Saturday, October 31, 2009
Going Home from the Hospital (take 2)
So this is the second time we have posted a blog about going home from the hospital. Hopefully, there will never be a third.
The doctor (Pediatric Pulmonologist) examined Gaines this morning and felt like his cold is getting better and that the cold is past the point of developing into something else. Gaines will be on steroids for the next three days and we will increase the frequency of his albuterol treatments. The doctor did explain that it might take Gaines one to two weeks to get over this cold. He explained that it just takes a little longer for Gaines to recover because of his damaged lungs. Bottom line, we get to go home today.
Gaines should be discharged from Children's sometime this afternoon. We will then make the hour and a half trip home. Reed is going to stay with Grandparents for the rest of the weekend. It will be hard to be away from Reed this Halloween and not be able to take him trick or treating; but, we think it is best to keep him away from Gaines as much as possible right now. So without Reed at home tonight, it should be a fairly quiet night after two nights in the hospital.
Again, thank you to everyone for sending up prayers for Gaines. It is truly amazing how God has performed so many miracles in this little guy's life. Brittany and I know that God has his hand on our family because of the many prayers that are said for us. Thank you so much.
Beau
The doctor (Pediatric Pulmonologist) examined Gaines this morning and felt like his cold is getting better and that the cold is past the point of developing into something else. Gaines will be on steroids for the next three days and we will increase the frequency of his albuterol treatments. The doctor did explain that it might take Gaines one to two weeks to get over this cold. He explained that it just takes a little longer for Gaines to recover because of his damaged lungs. Bottom line, we get to go home today.
Gaines should be discharged from Children's sometime this afternoon. We will then make the hour and a half trip home. Reed is going to stay with Grandparents for the rest of the weekend. It will be hard to be away from Reed this Halloween and not be able to take him trick or treating; but, we think it is best to keep him away from Gaines as much as possible right now. So without Reed at home tonight, it should be a fairly quiet night after two nights in the hospital.
Again, thank you to everyone for sending up prayers for Gaines. It is truly amazing how God has performed so many miracles in this little guy's life. Brittany and I know that God has his hand on our family because of the many prayers that are said for us. Thank you so much.
Beau
Friday, October 30, 2009
The Report
Didn't I tell y'all it would be sometime before lunch when we saw a doctor? Anyway, I think we got a pretty good report from the doctor (ie...doctor and the 8 folks he brought in here with him...back to the teaching hospital routine). Really we talked mostly about Gaines overall and not so much about his cold. I actually had to ask what we were going to do about that. Here's the deal.
Gaines' second x-ray didn't show anything different from his first one which is good. I was hoping that maybe they'd be able to see some improvement in his lungs but they only looked the same...no better but no worse. Of course, I asked this doctor for his assessment on how long Gaines will be on oxygen and he thought sometime between his first and second birthday. Pretty much what the last doctor said. Not exactly what I wanted to hear but whatever. We'll just try and be patient.
The doctor was pretty concerned about his reflux which I was happy about. He says other than nutrition the second best thing to help Gaines' lungs is just not to damage them any more than they already are. We do this by keeping him healthy and by him not aspirating. So, we are taking some new steps to help it. We are keeping his formula the same (found out why...they really want to keep him on preemie formula until 6 months adjusted age) but adding an extra teaspoon of rice cereal to his bottle. We are also staying on the Baclofen but adding Prevacid. Hopefully this will help. We had pretty much given up on this since he's growing well but maybe things will change with these new measures. Oh, also...I got the go ahead on feeding Gaines cereal by spoon as long as its not taking away from his bottles. Beau told the nutritionist that was a good thing since I'd already done it.
In other news we are going to try and wean off the lasix some. He is currently on 1 mL of Lasix a day and we will now move to .75mL and eventually to .5 mL.
Supposedly he's supposed to be getting some steroids for his cold. We don't have them yet but maybe they'll get up here eventually. The really good news is that we are going to watch Gaines today and see how he eats and responds to the steroids and if he does well, he might be able to go home tomorrow. I am mentally prepared to stay until Sunday but tomorrow would be great if he is ready.
Gaines is awake and playing right now. He seems to feel better and Beau and I agree that we think he's improving. He's back down to 1 liter of oxgyen and his SATS are pretty good.
We've had two visitors since we've been here (in addition to Beau's mom, dad and sister meeting us here with dinner, pillows, blankets, snacks...awesome I know). One was an old friend of mine that I had not seen in a pretty good while and the other was a nurse that works here and has been reading our blog. We don't know her but she told me when she saw his name on their board she had to come in and meet us. Small world. We love meeting people who have been keeping up with us.
I think that's about it for now. I think Gaines is getting sleepy and I'm going to try and catch a nap. I know that I didn't get to sleep until after 1:30 last night and it was broken sleep at best. I am always amazed at the way hospitals run at night. They want you to rest but really have no intention of you getting it. Sorry...kind of a grouch about that right now.
Please keep praying...it's working.
Love to all,
Brittany
Gaines' second x-ray didn't show anything different from his first one which is good. I was hoping that maybe they'd be able to see some improvement in his lungs but they only looked the same...no better but no worse. Of course, I asked this doctor for his assessment on how long Gaines will be on oxygen and he thought sometime between his first and second birthday. Pretty much what the last doctor said. Not exactly what I wanted to hear but whatever. We'll just try and be patient.
The doctor was pretty concerned about his reflux which I was happy about. He says other than nutrition the second best thing to help Gaines' lungs is just not to damage them any more than they already are. We do this by keeping him healthy and by him not aspirating. So, we are taking some new steps to help it. We are keeping his formula the same (found out why...they really want to keep him on preemie formula until 6 months adjusted age) but adding an extra teaspoon of rice cereal to his bottle. We are also staying on the Baclofen but adding Prevacid. Hopefully this will help. We had pretty much given up on this since he's growing well but maybe things will change with these new measures. Oh, also...I got the go ahead on feeding Gaines cereal by spoon as long as its not taking away from his bottles. Beau told the nutritionist that was a good thing since I'd already done it.
In other news we are going to try and wean off the lasix some. He is currently on 1 mL of Lasix a day and we will now move to .75mL and eventually to .5 mL.
Supposedly he's supposed to be getting some steroids for his cold. We don't have them yet but maybe they'll get up here eventually. The really good news is that we are going to watch Gaines today and see how he eats and responds to the steroids and if he does well, he might be able to go home tomorrow. I am mentally prepared to stay until Sunday but tomorrow would be great if he is ready.
Gaines is awake and playing right now. He seems to feel better and Beau and I agree that we think he's improving. He's back down to 1 liter of oxgyen and his SATS are pretty good.
We've had two visitors since we've been here (in addition to Beau's mom, dad and sister meeting us here with dinner, pillows, blankets, snacks...awesome I know). One was an old friend of mine that I had not seen in a pretty good while and the other was a nurse that works here and has been reading our blog. We don't know her but she told me when she saw his name on their board she had to come in and meet us. Small world. We love meeting people who have been keeping up with us.
I think that's about it for now. I think Gaines is getting sleepy and I'm going to try and catch a nap. I know that I didn't get to sleep until after 1:30 last night and it was broken sleep at best. I am always amazed at the way hospitals run at night. They want you to rest but really have no intention of you getting it. Sorry...kind of a grouch about that right now.
Please keep praying...it's working.
Love to all,
Brittany
Friday Morning
If you are just now tuning in, see the post below but we are at Children's Hospital with Gaines. He's got a pretty good cold and with his lungs, our pediatrician wanted to be proactive and go ahead and get him up here.
I don't have a ton to report right now as we really haven't seen a doctor (two residents so far but you know how I feel about that). They did an x-ray last night and found that it did not look like he had any pneumonia which is wonderful. They just did another one this morning so hopefully it will still look good. Our pediatrician mentioned that we should come in to the hospital so that Gaines could be put on IV steroids but at this point...he's not on anything. The did a nasal swab this morning to check for any common viruses like RSV and hopefully we'll have the results on that this afternoon.
His sats weren't great last night so we turned him up to two liters but he's doing better this morning so I'm hoping to be able to wean him down a little as he settles into a morning nap.
I have more to report on just our general situation here...observances of how annoying hospital life is really but I'll save that for my next post. Got to leave you wanting to come back for more. I think Gaines has noticed that he's losing some readers and had to pull this little stunt to get his numbers back up.
I'm going to get dressed and hopefully talk to the doctor around 9 (so in doctor speak sometime before lunch) and I'll report back as soon as I know something. Please pray for Gaines' little lungs.
Love to all,
Brittany
I don't have a ton to report right now as we really haven't seen a doctor (two residents so far but you know how I feel about that). They did an x-ray last night and found that it did not look like he had any pneumonia which is wonderful. They just did another one this morning so hopefully it will still look good. Our pediatrician mentioned that we should come in to the hospital so that Gaines could be put on IV steroids but at this point...he's not on anything. The did a nasal swab this morning to check for any common viruses like RSV and hopefully we'll have the results on that this afternoon.
His sats weren't great last night so we turned him up to two liters but he's doing better this morning so I'm hoping to be able to wean him down a little as he settles into a morning nap.
I have more to report on just our general situation here...observances of how annoying hospital life is really but I'll save that for my next post. Got to leave you wanting to come back for more. I think Gaines has noticed that he's losing some readers and had to pull this little stunt to get his numbers back up.
I'm going to get dressed and hopefully talk to the doctor around 9 (so in doctor speak sometime before lunch) and I'll report back as soon as I know something. Please pray for Gaines' little lungs.
Love to all,
Brittany
Thursday, October 29, 2009
Back in the Hospital
We decided to take Gaines to the doctor this afternoon to get him checked out. He has had a "wet cough" for the past day and a half. Our pediatrician listened to his chest, measured his breathing, took his temperature, etc. Long story short...we made the trip to Birmingham tonight and Gaines has been admitted to Children's Hospital.
We think that Gaines has just caught a cold and it has really hit him hard. More or less, the doctors admitted Gaines to make sure that he doesn't get any worse. Hopefully this cold doesn't develop into anything else. We will post more as we know more.
Please pray for Gaines to get better.
Beau
We think that Gaines has just caught a cold and it has really hit him hard. More or less, the doctors admitted Gaines to make sure that he doesn't get any worse. Hopefully this cold doesn't develop into anything else. We will post more as we know more.
Please pray for Gaines to get better.
Beau
First Cold
Just a quick prayer request for Gaines this morning. I am afraid that he's picked up Reed's cold. Tuesday afternoon his head sounded a little stuffy and by yesterday afternoon his chest started sounding pretty congested. I'm trying not to be terribly worried right now since he has no fever and his sats are still great...I even saw 99 and 100 some last night, but a few prayers going up would be appreciated. I'm interested to see how he responds to this cold and hoping that he shakes it off easily. Eventually his immune system is going to need to be built up so I'm ok with a little cold as long as it doesn't turn into anything major.
His home health nurse came over yesterday and listened to him and thought he sounded fine and he has an appointment tomorrow for his next synagis shot and quick check-up with his pediatrician so I'm trying to decide if we should be calm and just wait since his sats are still ok or be proactive and go ahead and go in today.
I'll try and update later tonight.
Love to all,
Brittany
His home health nurse came over yesterday and listened to him and thought he sounded fine and he has an appointment tomorrow for his next synagis shot and quick check-up with his pediatrician so I'm trying to decide if we should be calm and just wait since his sats are still ok or be proactive and go ahead and go in today.
I'll try and update later tonight.
Love to all,
Brittany
Sunday, October 25, 2009
Pictures and a Video
Below is a video of our two sweet boys and a few pictures from Reed's Birthday.
Reed's Birthday breakfast at Chik-Fil-A.
Reed having a birthday cupcake/ice cream with his class at school.
Reed's new bike.
Reed's Birthday breakfast at Chik-Fil-A.
Reed having a birthday cupcake/ice cream with his class at school.
Reed's new chair he got for his birthday.
Reed's new bike.
Wednesday, October 21, 2009
Just a couple of quick things. First of all, Gaines was weighed today and he seems to be back on track. He gained 8 ounces which is just over what he should be gaining. He is now 12 lbs 1 oz. He doesn't look any fatter to me but he is definitely a long little joker. The home health nurse mentioned today that he is almost hanging off the scale. So, that was good news.
He's still spitting up regularly and in large amounts but he is taking more in so I guess he is growing. As long as he is growing I can handle the spit ups. Its still super annoying and Alabama Power loves the amount of laundry we are doing these days, but I can handle it. I am however, starting to take matters into my own hands. Yesterday I fed Gaines cereal. He did great with it. He gagged on it here and there but it all stayed down. As did the bottle that followed it. No doctor has really been in favor of doing cereal or baby food at this point as the bottles are so much more caloric for him but I figure if its in addition to the bottle, no harm done. Last night's bottle stayed down so we'll see if it keeps up. Granted, his last bottle of the day is generally his best at keeping down but still. I think we might try cereal twice a day and see what happens. I remember when Reed was little and I'd ask about him spitting up the doctors told me that he probably would until his food started getting heavier, so we'll see.
The Early Intervention folks came over yesterday to assess Gaines and see if he qualifies. To qualify you have to be more than 25% behind your adjusted age. Gaines' adjusted age is 3½ months and he tested as a three month old. This means he is less than 25% behind...a really good thing. Now, he still doesn't really want to hold his head like he is supposed to so she didn't factor that into his score. Right now, there are a couple of reasons that he could be holding it back: 1. Helps him breath. 2. Helps with his reflux hurting. 3. In and effort to keep pressure off of his hernia. The hope is just that he is able to sit in his bumbo chair by adjusted age 6 months with his head held upright for a minute. PLEASE pray with me that he makes progress in this specific area.
I have a peace about his lung issues and the reflux as I know that he will outgrow them but the head issue/milestones meeting really weighs heavy on my heart. I so badly want Gaines to be a "normal"kid but to get to that point the first step is good head control. I have to admit, I've had a really hard week worrying about that. I KNOW that I can't control it and that we are doing everything that we can do and I KNOW that we are tremendously blessed to have Gaines in our lives no matter what but having a giant question mark about your child's future is a very hard thing to deal with. I'm just praying that it is God's will to be completely without any signs of his prematurity and rough start in life and that he will be an example of God's grace and answered prayers. He has battled through so much already and I know that he will keep fighting.
So, back to EI...the good news is that he technically doesn't qualify for EI but because of his risk factors, he is going to be able to receive the services. Risk factors like his prematurity, etc. So, we are now waiting on an administrator to work up a good plan for him. The other positive news from that appointment yesterday is that his private physical therapist is also his EI therapist and she saw him yesterday for the first time in about two weeks and was really pleased with his progress.
Now for Reed, he had a great two year old check-up this week. He got a finger prick (no crying) and a flu shot (big tears) but he was so good throughout the whole appointment. Our doctor thinks that he is ready to start potty training so I think we'll see how that goes this weekend. Any tips there are greatly appreciated. Sounds like more laundry to me but maybe he will take to it well. OH, one more thing. Reed got a "bike" (tricycle) for his birthday and yesterday he was riding it using the pedals and everything. So grown up!
I think that's about it for now...my eyes are so sleepy.
Love to all,
Brittany
He's still spitting up regularly and in large amounts but he is taking more in so I guess he is growing. As long as he is growing I can handle the spit ups. Its still super annoying and Alabama Power loves the amount of laundry we are doing these days, but I can handle it. I am however, starting to take matters into my own hands. Yesterday I fed Gaines cereal. He did great with it. He gagged on it here and there but it all stayed down. As did the bottle that followed it. No doctor has really been in favor of doing cereal or baby food at this point as the bottles are so much more caloric for him but I figure if its in addition to the bottle, no harm done. Last night's bottle stayed down so we'll see if it keeps up. Granted, his last bottle of the day is generally his best at keeping down but still. I think we might try cereal twice a day and see what happens. I remember when Reed was little and I'd ask about him spitting up the doctors told me that he probably would until his food started getting heavier, so we'll see.
The Early Intervention folks came over yesterday to assess Gaines and see if he qualifies. To qualify you have to be more than 25% behind your adjusted age. Gaines' adjusted age is 3½ months and he tested as a three month old. This means he is less than 25% behind...a really good thing. Now, he still doesn't really want to hold his head like he is supposed to so she didn't factor that into his score. Right now, there are a couple of reasons that he could be holding it back: 1. Helps him breath. 2. Helps with his reflux hurting. 3. In and effort to keep pressure off of his hernia. The hope is just that he is able to sit in his bumbo chair by adjusted age 6 months with his head held upright for a minute. PLEASE pray with me that he makes progress in this specific area.
I have a peace about his lung issues and the reflux as I know that he will outgrow them but the head issue/milestones meeting really weighs heavy on my heart. I so badly want Gaines to be a "normal"kid but to get to that point the first step is good head control. I have to admit, I've had a really hard week worrying about that. I KNOW that I can't control it and that we are doing everything that we can do and I KNOW that we are tremendously blessed to have Gaines in our lives no matter what but having a giant question mark about your child's future is a very hard thing to deal with. I'm just praying that it is God's will to be completely without any signs of his prematurity and rough start in life and that he will be an example of God's grace and answered prayers. He has battled through so much already and I know that he will keep fighting.
So, back to EI...the good news is that he technically doesn't qualify for EI but because of his risk factors, he is going to be able to receive the services. Risk factors like his prematurity, etc. So, we are now waiting on an administrator to work up a good plan for him. The other positive news from that appointment yesterday is that his private physical therapist is also his EI therapist and she saw him yesterday for the first time in about two weeks and was really pleased with his progress.
Now for Reed, he had a great two year old check-up this week. He got a finger prick (no crying) and a flu shot (big tears) but he was so good throughout the whole appointment. Our doctor thinks that he is ready to start potty training so I think we'll see how that goes this weekend. Any tips there are greatly appreciated. Sounds like more laundry to me but maybe he will take to it well. OH, one more thing. Reed got a "bike" (tricycle) for his birthday and yesterday he was riding it using the pedals and everything. So grown up!
I think that's about it for now...my eyes are so sleepy.
Love to all,
Brittany
Sunday, October 18, 2009
Week Recap
So have y'all forgotten about us? Its been over a week...but in my defense its been a crazy week. I've had an event going on for work so I was leaving here before 7 and getting home after 10 for a couple of days. Plus, Friday was Reed's birthday so we've had that going on. I iced his cupcakes Thursday night (PS, this was the first time I have frozen cupcakes but I have a friend that does it all the time. I just put them in tupperware...they turned out great) but the real extravaganza started Friday.
Friday morning, Beau and I took Reed to breakfast at Chick-Fil-A, that afternoon I went over to his school for cupcakes (my company has an on-site daycare) and that night we met family at our favorite Mexican restaurant for dinner...Gaines stayed home with Terri (the nanny). That was the first time that Beau, Reed and I have been out to dinner since Gaines came home. We had a great time and Reed seemed to really take to the whole birthday thing. Presents, cake, extra attention...what's not to love.
My mom stayed with us all weekend so Beau and I were really able to spend a lot of time with Reed. He's been a real trooper since March so I wanted to really make his birthday super fun. Saturday afternoon we took him to the fair that happened to be in town. Two highlights there...he pointed to one of the cows in the livestock area and said..."Hippo". Also, he must have been impressed with the ferris wheel because he kept looking at it and saying, "Beautiful". I've never heard that word out of his mouth and there he his using it to describe the ferris wheel. Sidenote there, is the ferris wheel not the scariest ride? I hate them.
Saturday evening I let Reed paint pumpkins and by default, his whole arms while I was in the kitchen (newsflash...two year old + paint = giant mess). Today Beau and I were able to take Reed to church before heading to Playhouse Disney Live this afternoon. Reed is now the proud owner of a Handy Manny hat (among various other very generous gifts) and he got to see the "real" Mickey Mouse. I broke the news to him tonight that as of sundown...the birthday celebration was over. He was so worn out he went to bed early tonight.
The Gaines update is really just about the spitting up. Last week he only gained one ounce...he should be gaining an ounce a day so last week was not so good for him. I kind of think his spitting up is worse even though we changed formula (Similac Neosure) and medicine (bacloven?? I think). Our pulmonologist consulted with a GI specialist this week to come up with the new medicine. It's actually a medication for something else but happens to really work well on reflux...supposedly...I don't think it's working too great. He is taking more at each feeding but still spitting up almost every feeding. I'm waiting until he's weighed on Wednesday to call back. He should be weighed again Wednesday so I think we'll know a lot more then as to how he's doing. I wasn't so excited about last week's weight gain but I won't be concerned unless it happens this week too.
Also, I think that Gaines is making some progress with his head control and development. He's doing better about not holding his head so far back and has been playing with his toys a good bit. Please keep this prayer request in mind this week...I really would love it if you all would pray for his head control to keep developing. He has to get that down before he can master sitting up, standing, walking etc. I'll feel so much better about things once we have that under control. Its probably my biggest concern right now...he's doing great on his oxygen.
I think that's about it. It's been a long week and I'm worn out. Please continue to keep Gaines and our family in your prayers and forgive the lack of posting. I'll try and be better this week.
Love to all,
Brittany
Friday morning, Beau and I took Reed to breakfast at Chick-Fil-A, that afternoon I went over to his school for cupcakes (my company has an on-site daycare) and that night we met family at our favorite Mexican restaurant for dinner...Gaines stayed home with Terri (the nanny). That was the first time that Beau, Reed and I have been out to dinner since Gaines came home. We had a great time and Reed seemed to really take to the whole birthday thing. Presents, cake, extra attention...what's not to love.
My mom stayed with us all weekend so Beau and I were really able to spend a lot of time with Reed. He's been a real trooper since March so I wanted to really make his birthday super fun. Saturday afternoon we took him to the fair that happened to be in town. Two highlights there...he pointed to one of the cows in the livestock area and said..."Hippo". Also, he must have been impressed with the ferris wheel because he kept looking at it and saying, "Beautiful". I've never heard that word out of his mouth and there he his using it to describe the ferris wheel. Sidenote there, is the ferris wheel not the scariest ride? I hate them.
Saturday evening I let Reed paint pumpkins and by default, his whole arms while I was in the kitchen (newsflash...two year old + paint = giant mess). Today Beau and I were able to take Reed to church before heading to Playhouse Disney Live this afternoon. Reed is now the proud owner of a Handy Manny hat (among various other very generous gifts) and he got to see the "real" Mickey Mouse. I broke the news to him tonight that as of sundown...the birthday celebration was over. He was so worn out he went to bed early tonight.
The Gaines update is really just about the spitting up. Last week he only gained one ounce...he should be gaining an ounce a day so last week was not so good for him. I kind of think his spitting up is worse even though we changed formula (Similac Neosure) and medicine (bacloven?? I think). Our pulmonologist consulted with a GI specialist this week to come up with the new medicine. It's actually a medication for something else but happens to really work well on reflux...supposedly...I don't think it's working too great. He is taking more at each feeding but still spitting up almost every feeding. I'm waiting until he's weighed on Wednesday to call back. He should be weighed again Wednesday so I think we'll know a lot more then as to how he's doing. I wasn't so excited about last week's weight gain but I won't be concerned unless it happens this week too.
Also, I think that Gaines is making some progress with his head control and development. He's doing better about not holding his head so far back and has been playing with his toys a good bit. Please keep this prayer request in mind this week...I really would love it if you all would pray for his head control to keep developing. He has to get that down before he can master sitting up, standing, walking etc. I'll feel so much better about things once we have that under control. Its probably my biggest concern right now...he's doing great on his oxygen.
I think that's about it. It's been a long week and I'm worn out. Please continue to keep Gaines and our family in your prayers and forgive the lack of posting. I'll try and be better this week.
Love to all,
Brittany
Saturday, October 10, 2009
Weekend, Laughing and Random Commentary
Hello all. We've been enjoying another nice weekend with everyone under one roof. Reed and I grocery shopped and then picked him up a new pair of church shoes. Side note there...has anyone bought kids shoes lately? We just got a nice pair of the little black and white saddle oxford shoes for winter (he outgrew his other ones...I was just planning to let him wear his summer ones all winter...totally uncouth, I know) but I was shocked by the price of them. Maybe its just me but shoes for Reed should be $20...max. Oh, and PS, they are navy and white...not black. I always thought they were black but at both stores I checked, they were navy. Weird.
Sorry, I got off track. We also had a visitor today. One of Beau's good friends who lives in Dallas came by for a visit. Gaines has actually had a couple of visitors lately. One of my good friends stopped in this week and my sister got to see Gaines for the first time since he's been home. We are still being very cautious about exposing him to too many people but I think Gaines appreciated getting to see a few new faces.
Speaking of Gaines he is continuing to do well. He had another great weight at this weeks' weigh in (he's 11 lbs 9 oz now). Right now they want him gaining one ounce a day and he's gaining just over that. We are so thankful that growing doesn't seem to be a problem right now. He's doing great on his oxygen and its all I can do not to bump his flow down a little bit. I'm not supposed to mess with it but its tough. Reed actually tested Gaines a little bit twice today. Thankfully his concentrator lets out an ear piercing alarm if the flow is messed with because Reed turned Gaines down to zero twice today. He didn't know better but the second time it happened there were tears involved. I don't think it will be happening again.
We arrived a little early for Gaines' physical therapy appointment this week so we stopped by the NICU to say hi. I think his nurses were happy to see him and they all thought he looked great. Our favorite doctor was on(I probably shouldn't call him our favorite because we loved them all but there was just something about this doctor that we really liked) and I mentioned to him about Gaines laughing these days. I could tell in his face that he thought it was a really good thing. I thought it was a big deal neurologically and talking to him confirmed that for me. We've only been gone a month but it was weird being back in the NICU.
I'll be working a lot of late nights this week so keep Beau in your prayers. He'll have Reed and Gaines by himself a good bit next week. Also next week our little Reed turns two. I cannot believe he's going to be two. Really I can't believe I have two kids under two. What was I thinking? Our house is ridiculously crazy at times but I really do love it.
Back to our weekend, I try and cook on the weekends when I have a little more time so today I made a big pot of chicken and dumplings. I'm always proud of myself when I make something that my grandmothers make. Tomorrow I'll make cupcakes to freeze for Reed's birthday. Being able to cook for my family makes me feel like a better mother for some reason.
I know this has been a completely random post but that's pretty much our life these days. Check out the video below of Gaines laughing. Its not his best laugh but it the best we could catch on camera...and ignore my annoying high pitched baby voice.
Love to all,
Brittany
Sorry, I got off track. We also had a visitor today. One of Beau's good friends who lives in Dallas came by for a visit. Gaines has actually had a couple of visitors lately. One of my good friends stopped in this week and my sister got to see Gaines for the first time since he's been home. We are still being very cautious about exposing him to too many people but I think Gaines appreciated getting to see a few new faces.
Speaking of Gaines he is continuing to do well. He had another great weight at this weeks' weigh in (he's 11 lbs 9 oz now). Right now they want him gaining one ounce a day and he's gaining just over that. We are so thankful that growing doesn't seem to be a problem right now. He's doing great on his oxygen and its all I can do not to bump his flow down a little bit. I'm not supposed to mess with it but its tough. Reed actually tested Gaines a little bit twice today. Thankfully his concentrator lets out an ear piercing alarm if the flow is messed with because Reed turned Gaines down to zero twice today. He didn't know better but the second time it happened there were tears involved. I don't think it will be happening again.
We arrived a little early for Gaines' physical therapy appointment this week so we stopped by the NICU to say hi. I think his nurses were happy to see him and they all thought he looked great. Our favorite doctor was on(I probably shouldn't call him our favorite because we loved them all but there was just something about this doctor that we really liked) and I mentioned to him about Gaines laughing these days. I could tell in his face that he thought it was a really good thing. I thought it was a big deal neurologically and talking to him confirmed that for me. We've only been gone a month but it was weird being back in the NICU.
I'll be working a lot of late nights this week so keep Beau in your prayers. He'll have Reed and Gaines by himself a good bit next week. Also next week our little Reed turns two. I cannot believe he's going to be two. Really I can't believe I have two kids under two. What was I thinking? Our house is ridiculously crazy at times but I really do love it.
Back to our weekend, I try and cook on the weekends when I have a little more time so today I made a big pot of chicken and dumplings. I'm always proud of myself when I make something that my grandmothers make. Tomorrow I'll make cupcakes to freeze for Reed's birthday. Being able to cook for my family makes me feel like a better mother for some reason.
I know this has been a completely random post but that's pretty much our life these days. Check out the video below of Gaines laughing. Its not his best laugh but it the best we could catch on camera...and ignore my annoying high pitched baby voice.
Love to all,
Brittany
Tuesday, October 6, 2009
Couple of Quick Things
Just a couple of quick things. Gaines' swallowing test went well yesterday. The test showed that he is not aspirating at all when he eats. Why we were checking that, I have no idea. I thought the test would give some insight into why he's spitting up, but no. I thought the test was kind of an afterthought when the doctor suggested it but it was such a crazy day that I didn't question him on it. Normally I question things to death. I don't mind doing what people ask but I always want to know why. Anyway, I think it was a waste of time but whatever.
After the test I decided to check with our pediatrician about switching formulas. Gaines is on Enfacare right now. Its a formula for preemies. Even though he is no longer a preemie, they want him on this formula because of all the extra nutrients...not just the extra calories. So, because of this, I wanted to check with a doctor before I just switched him. Our pediatrician didn't feel comfortable switching him right now so I think we'll check with the pulmonologist/nutritionist tomorrow and see what they think. For now, we really respect our pediatrician so we'll stick with what he thinks.
Two other points of interest...Gaines laughed last night. He's been smiling a lot but I'd never heard him laugh. It was such a great sound. Made my heart happy. Also, he rolled from his tummy to back today. He was propped on a small blanket so I don't really count it until he does it flat on the floor but it he was not propped much so maybe he'll do it "for real" very soon. This makes me really happy as I am pretty anxious about him catching up on his milestones. I mostly worry about head control but its awesome to mark any of them off the list.
This is already much longer than I had anticipated but I just wanted to share. My eyes are so sleepy. My rooster crows around 5 these days. If anyone knows how to fix a 2 year old rooster...let me know. He's killing me.
Love to all,
Brittany
After the test I decided to check with our pediatrician about switching formulas. Gaines is on Enfacare right now. Its a formula for preemies. Even though he is no longer a preemie, they want him on this formula because of all the extra nutrients...not just the extra calories. So, because of this, I wanted to check with a doctor before I just switched him. Our pediatrician didn't feel comfortable switching him right now so I think we'll check with the pulmonologist/nutritionist tomorrow and see what they think. For now, we really respect our pediatrician so we'll stick with what he thinks.
Two other points of interest...Gaines laughed last night. He's been smiling a lot but I'd never heard him laugh. It was such a great sound. Made my heart happy. Also, he rolled from his tummy to back today. He was propped on a small blanket so I don't really count it until he does it flat on the floor but it he was not propped much so maybe he'll do it "for real" very soon. This makes me really happy as I am pretty anxious about him catching up on his milestones. I mostly worry about head control but its awesome to mark any of them off the list.
This is already much longer than I had anticipated but I just wanted to share. My eyes are so sleepy. My rooster crows around 5 these days. If anyone knows how to fix a 2 year old rooster...let me know. He's killing me.
Love to all,
Brittany
Sunday, October 4, 2009
Weekend Update
Hello all. I feel like I haven't posted in so long that I need to reintroduce myself. It's crazy to think that we used to update this thing multiple times a day. There is no way we could do that now. It's amazing to me that two children are three times the work. Not complaining...just an observation. We are crazy busy around here but its an awesome feeling.
We've had a pretty good weekend here. Reed and I ran some errands yesterday morning which included getting him a haircut and picking up a couple of Christmas presents. I know...it's barely October. I just like to shop early so that when the actual Christmas season rolls around, I can enjoy it. Anyway...we pretty much just watched football and hung around the house yesterday afternoon. Beau and Reed went to church this morning and the zoo this afternoon. Gaines and I have been spending a lot of good quality time together today. He is cat-napping now.
Let's see...the Gaines update. The doctor has changed Gaines' medicine from Zantac to Nexium but it doesn't seem to be working so hot either. He still spits up like crazy...but the medicine should be making it less painful for him (think about all that stomach acid coming up). He has that swallowing study tomorrow so hopefully that will go well. I'm not exactly sure what we are looking for there but pray for favorable results. About the spitting up...someone asked about changing his formula. I've been wondering that myself as well. All I can figure is that he needs to be on this formula he's on. I'm pretty sure its for preemies but even though he's past that stage, he still needs all the extra stuff that's in it. I think to give him extra nutrition because of his lungs but also to replace some of what the diuretics take out (remember he's still on 3 of those).
Went off on a tangent there, sorry. Gaines got weighed at the pediatrician's office Friday and it was another perfect weight. Thank goodness for that or I'd really be stressing about this spitting up business. Developmentally he seems to be doing well too. Every time he goes to physical therapy I learn a little more about what he should be doing. Right now we do stretches to stretch his hamstrings and ankles...I guess that would be Achilles?...and try to get him to use his front neck muscles. We also do things like put him on his side and let him try to play with a toy in front of him with his top hand. There's just all kind of things. His physical therapist is great and the good news is that we will see her through Early Intervention as well...as soon as that gets set up. It seems to take a little while.
Gaines is growing and doing great and I am beyond thankful for him and how far he has come. I've been thinking a lot lately about that. I remember his first day here when the NICU doctor came and got us from my post partum room because Gaines was not doing well. We sat in that NICU clinging to each other as we watched a team of doctors and nurses work on him. We watched the numbers on his monitor drop and our hearts sank as the nurse asked if we wanted a chaplain to baptize him. That was a hard day and there were many other very hard days...that seems like the understatement of the year...but look at where he is now. God is so good.
So now, as I continue to pray for Gaines' complete healing, I know in the back of my mind that it would be a miracle for him to come out of this with no lingering effects but I also know that him laying in my floor sleeping sweetly right now is a miracle and I know that they do happen and I know what an awesome thing prayer is.
Please continue to keep Gaines in your prayers. Pray that his little lungs will be healed and that he'll be up and running around with his brother very soon. Oh, and for safe travels tomorrow for his appointment and all the little babies out there fighting for healthy lungs.
Love to all,
Brittany
We've had a pretty good weekend here. Reed and I ran some errands yesterday morning which included getting him a haircut and picking up a couple of Christmas presents. I know...it's barely October. I just like to shop early so that when the actual Christmas season rolls around, I can enjoy it. Anyway...we pretty much just watched football and hung around the house yesterday afternoon. Beau and Reed went to church this morning and the zoo this afternoon. Gaines and I have been spending a lot of good quality time together today. He is cat-napping now.
Let's see...the Gaines update. The doctor has changed Gaines' medicine from Zantac to Nexium but it doesn't seem to be working so hot either. He still spits up like crazy...but the medicine should be making it less painful for him (think about all that stomach acid coming up). He has that swallowing study tomorrow so hopefully that will go well. I'm not exactly sure what we are looking for there but pray for favorable results. About the spitting up...someone asked about changing his formula. I've been wondering that myself as well. All I can figure is that he needs to be on this formula he's on. I'm pretty sure its for preemies but even though he's past that stage, he still needs all the extra stuff that's in it. I think to give him extra nutrition because of his lungs but also to replace some of what the diuretics take out (remember he's still on 3 of those).
Went off on a tangent there, sorry. Gaines got weighed at the pediatrician's office Friday and it was another perfect weight. Thank goodness for that or I'd really be stressing about this spitting up business. Developmentally he seems to be doing well too. Every time he goes to physical therapy I learn a little more about what he should be doing. Right now we do stretches to stretch his hamstrings and ankles...I guess that would be Achilles?...and try to get him to use his front neck muscles. We also do things like put him on his side and let him try to play with a toy in front of him with his top hand. There's just all kind of things. His physical therapist is great and the good news is that we will see her through Early Intervention as well...as soon as that gets set up. It seems to take a little while.
Gaines is growing and doing great and I am beyond thankful for him and how far he has come. I've been thinking a lot lately about that. I remember his first day here when the NICU doctor came and got us from my post partum room because Gaines was not doing well. We sat in that NICU clinging to each other as we watched a team of doctors and nurses work on him. We watched the numbers on his monitor drop and our hearts sank as the nurse asked if we wanted a chaplain to baptize him. That was a hard day and there were many other very hard days...that seems like the understatement of the year...but look at where he is now. God is so good.
So now, as I continue to pray for Gaines' complete healing, I know in the back of my mind that it would be a miracle for him to come out of this with no lingering effects but I also know that him laying in my floor sleeping sweetly right now is a miracle and I know that they do happen and I know what an awesome thing prayer is.
Please continue to keep Gaines in your prayers. Pray that his little lungs will be healed and that he'll be up and running around with his brother very soon. Oh, and for safe travels tomorrow for his appointment and all the little babies out there fighting for healthy lungs.
Love to all,
Brittany
Wednesday, September 30, 2009
Wachovia Fraud Department
It has been four days since we last posted a blog. Amazing isn't it? When this journey first started there was a reason to update the blog three, maybe four times a day. Its so nice that we can go four days with not much news.
On Friday of this week Gaines gets his first synagis shot. This is a shot he will get once per month during the winter to help prevent RSV. Thank goodness for insurance...the shot is ridiculously expensive. Oh yeah, I wanted to mention one funny thing that happened. Our Wachovia debit card was red flagged by the Wachovia Fraud Department because we have spent so much money at CVS in the past two weeks. We thought it was funny...sort of.
Please pray that Gaines continues to get better. Below are a few new pictures of our boys.
Beau
Probably the biggest news in the last couple of days is Gaines' weight. The doctors are wanting him to gain about 1 ounce per day. He was weighed today for the first time in 5 days and guess what...he gained 5 ounces. Exactly what the doctors want him to gain. Oh by the way, you might want to sit down for this one. Our little 3 pounder is now 11 pounds 1 ounce. The only other change this past week has been medication. Gaines is continuing to spit up 3 to 4 times per day. He has been on Zantac but today he was switched to Nexium. Please pray that Nexium will be his "miracle drug" and will help with his spitting up.
On Friday of this week Gaines gets his first synagis shot. This is a shot he will get once per month during the winter to help prevent RSV. Thank goodness for insurance...the shot is ridiculously expensive. Oh yeah, I wanted to mention one funny thing that happened. Our Wachovia debit card was red flagged by the Wachovia Fraud Department because we have spent so much money at CVS in the past two weeks. We thought it was funny...sort of.
Please pray that Gaines continues to get better. Below are a few new pictures of our boys.
Beau
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