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
Saturday, December 26, 2009
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
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