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

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

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.

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

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.

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

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

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

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

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

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.

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

Halloween Pictures

Reed went Trick or Treating in Andalusia with Brittany's parents. It was really tough not to go trick or treating with him but it looks like he had a blast.

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 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

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

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

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

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 chair he got for his birthday.

Reed's new bike.

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

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

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

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

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

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.

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

Longest Post Ever?

Hello all. I'm still alive. Just adjusting to life with two kids and loving every minute of it. Right now I'm just killing time until Gaines' ten o'clock feeding so I thought I'd fill you in on what's been going on. Gaines is still doing really well at home and he's had a really good week. Per the pulmonologist's instructions, he's still on one liter but his sats have been great. His monitor doesn't pick up well when he's awake because he's so active but when he's sleeping he sats between 97 and 99/100. It's all I can do not to "accidentally" turn him down just to see how he'd do.

I believe that Beau posted about our weight concerns in his post below but I'm feeling better about things after Friday's weigh in. All week I worried that he wasn't going to gain because he still spits up so much won't always take all of his bottles. Mostly its just his middle of the night bottle. We are still supposed to wake him up at night to feed him because his nutrition is so important to his lungs getting better but I think if he was given the chance, he'd come pretty close to sleeping through the night. I think that if he's still steadily gaining in about two weeks, we'll quit waking him up and just let him dictate what he wants to do. We've kind of settled into a routine on his nighttime feedings. I do the 10 p.m. one and Beau does the middle of the night. He chose it so don't feel too sorry for him.

Gaines also had a really good physical therapy appointment this week too. His therapist was pleased with where Gaines was right now and was cautiously optimistic. She showed us some new stretches to be doing with him and gave us some goals to be working towards. I think he's doing pretty well. This child will be a rubber band by the time I get through with him. He gets stretched A LOT. I don't want him to have some problem later in life that could have been avoided if I'd been more diligent about his PT. I was so worried going in to this appointment that Gaines would be behind on more things than I realized but I came out feeling better.

Gaines got a new baby gym so that he can practice batting and grabbing at toys. He had one but it really wasn't a very good one. It was Reed's and I only chose it because it matched all his other stuff. Rookie mistake. Anyway, Beau brought it in the other day and Reed was pretty excited about it because up until now, any toy that came into the house was for him. He was devastated when I told him it was for Gaines. I mean, big ole crocodile tears. It was the most jealousy that I've seen out of him since Gaines has been home. Even this morning he pointed at it and told me, "That's mine". I sweetly told him that no, it was Gaines'. More tears. I think he finally got over it when I pointed out the giant basket of toys two feet away that were all his. Other than, that he's been pretty good about Gaines. Did I tell y'all that he told me he needed help with his sippy cup when he saw me feeding Gaines a bottle? Yeah, I got a, "I need hep mama. Mama, I need hep." Sweet little thing. Oh, one more thing about Reed. He counted to 10 for me tonight. Not even two and he can count. Genius.

Gaines is still sweet as ever. He really is a good baby. He doesn't cry much and when he does, all you have to do is lay him in the floor and let him wiggle around. His head control has gotten a lot better and I think we are going to bring his exersaucer in tomorrow. Just for little bits of time. I think it really helped Reed when he was a baby.

This morning I ran into one of Gaines' NICU doctors at the grocery store. If I had to choose a favorite it would probably be this one (although we loved them all). I was so glad to be able to give him a good report. It was weird seeing him out of the hospital. Have I mentioned how thankful I am to be out of the hospital? I mean our life is crazy busy with Reed and Gaines (and all that comes with him...feedings, medicines, breathing treatments, exercises, countless appointments, prescription claims to file, etc.) but it is awesome. We've had two normal weekends at home and I'm loving it. No hospital visits, no taking turns with our children, just normal...or as normal as our life is going to get right now. We still don't take Gaines out so we have to work around that, we have a pharmacy in our kitchen and Gaines basically lives in two rooms of our house (he's never been in his own room because his oxygen cord won't reach) but its our normal and it works for us.

I guess I'll run for now. This post was super long and its time for Gaines' breathing treatments. We got switched from Pulmicort to Flovent which is much faster and MUCH less expensive thank goodness. Now maybe we can just get Reed switched after his next appointment (he gets the treatments for his asthma).

Oh...two questions that we've gotten that I wanted to address really quickly. As far as I am aware, Gaines is not eligible for any sort of government assistance. I understand that babies born below 1000 grams are eligible for Social Security and thus medicare and WIC, etc but Gaines was thankfully above this weight. Believe me, I'd take advantage of anything he was eligible for.

Also, I didn't plan to call both of my boys by their middle names it just sort of happened. We knew that we wanted Reed to be called Reed and that we wanted to use John (both are family names) in his name...I just thought John Reed sounded better than Reed John. Same with Gaines. Both names are family names, we just wanted to call him Gaines and I thought Thomas Gaines sounded better than Gaines Thomas...actually both of those are ok really but Reed John doesn't exactly roll off the tongue. Neither of my parents go by their first names and warned me that I would be ruining their lives (that's an exaggeration but they did express an opinion on it...as did other people) but Beau isn't in Beau's real name anywhere and he says it wasn't a problem for him so we just did it.

Now I'm really going...that was a lot of randomness. Please keep us in your prayers. Gaines still needs them.

Love to all,

Brittany

Good Weight Gain

It seems as though every week there is something new to worry about. This week the worry has been weight gain. Gaines gained a good amount of weight his first week home from the hospital...almost too much. He gained 9 ounces his first week at home weighing in at 10 pounds 10 ounces last Friday. He then lost weight last weekend and weighed in at 10 pounds 8 ounces this past Tuesday. Brittany and I were concerned. The Pulmonologist made it very clear that Gaines will get better as he grows. It was disheartening to see him lose weight. Since Tuesday we have been praying for weight gain. He was scheduled to be weighed today and we were hoping he would gain two, maybe three ounces. He was weighed this morning and he had gained 4 ounces and now weighs 10 pounds 12 ounces! I know all of this sounds kind of ridiculous...worrying about ounces. Its just that Gaines will get better by making small steps and we get excited when we see him moving forward.

Gaines also had his first physical therapy appointment this week. The therapist thought the tone problems in his legs was limited to his hamstrings. The therapists showed us specific stretches we should do with Gaines to help. The therapist also showed us several activities that Gaines can do that will help him develop. We take him back for physical therapy again next week.

Not much else to update right now. Please continue to pray for Gaines to grow and for his lungs to heal. Also, please pray that our household remains healthy.

Beau

The Pulmonologist Appointment

So sorry for not updating about yesterday's appointment but it was a looong day. Gaines' appointment was at 11:45 and we didn't leave Children's Hospital until after 4...just in time for 5:00 traffic. By the time we got to Montgomery, picked Reed up (he went home with a friend from school yesterday), bathed Reed and put him in bed we were both exhausted .

So, let's see what I can remember. When we first arrived and got Gaines' name situation worked out (he was listed as Gaines but really his first name is Thomas). I know, we ruined his life. Ruined Reed's too (John Reed) but he doesn't have as many appointments as Gaines so its not a huge issue for him. Anyway, when we first arrived we went for an x-ray and had some lab work done. We then met with a nurse, a nutritionist, a social worker and finally the doctor. We both really liked the doctor and since he's the doctor our niece sees, we knew a little bit about him...and him us.

Really he only made some minor changes to Gaines' medicines. We've switched from Pulmicort to Flovent which is much less expensive (hallelujah, Pulmicort is definitely not cheap) and takes less time to give/take the breathing treatment. He increased his Lasix and Zantac just a hair and the plan is to let him outgrow his other diuretics. Basically as he gets bigger, the dose gets relatively smaller. We were instructed not to mess with his oxygen right now. The doctor will give us direction on this at our next appointment in two months. Not exactly what I wanted to hear but I'll take it. Of course I asked how much longer the doctor thinks Gaines will be on oxygen. He thinks at least until his birthday. Again, not exactly what I wanted to hear but at least we know that its something he will grow out of.

The only other little change is that we are adding rice cereal to Gaines' formula now in hopes of helping with the spit ups. I think that its helping some. The doctor did want Gaines to come back for a swallowing study in a few weeks. Basically he will drink things with different consistencies that has barium in it and will show up on an x-ray type thing. Hopefully that will rule out any problems with his upper digestive tract. I really don't think that's the problem because he never spit up before he switched to formula a few weeks ago. I'm hoping the rice cereal will help but he has spit up twice today...both times after his larger feedings. Who knows. Just pray that his weight gain keeps up. He's actually dropped a couple of ounces since last week (today he weighed 10 pounds 8 ounces). Not too much...he's still in a good range, we just want to keep moving forward. The doctor really impressed on us how important Gaines' nutrition is. His lungs need to keep growing to get better.

That's really about it for the appointment but I did want to touch on something that Beau and I realized yesterday. As we walked around Children's hospital we saw lots of kids and their families coming and going...its a huge hospital and it was full of sick kids. Some worse than Gaines, some better than Gaines. It reminded me that I'm not the only mother in the world dealing with a sick baby. Their are lots of families out there struggling with the heartache that comes with a sick child. I just hope that they have the same support system that we do.

Gaines has a physical therapy appointment on Thursday. Please pray that this goes well and that Gaines is making progress on catching up. I'm particularly nervous about this appointment because of the possible CP talk we got a few weeks ago. I'm really hoping that we have more marks in the probably not category. We know that eventually Gaines will get over his lung issues but I'm nervous about this because its something he'll always have. I KNOW that in the great scheme of things that it is silly to worry about but a mother can't help wanting "normalcy" for her child.

Please keep us in your prayers. Particularly good growth, lung health, and for Gaines to overcome any physical setbacks he may have.

Love to all,

Brittany

New Pictures and Videos

Everything is still going well. Gaines actually slept through the night Friday night. We're not sure if he is supposed to. We have been feeding Gaines every four hours...10 PM, 2 AM, 6 AM, etc. Friday night he would not wake up for his 2 AM bottle and then slept until 5 AM. We are going to ask the pulmonologist about this at Gaines' appointment on Monday. Maybe they will let us skip the middle of the night feeding since Gaines is doing such a good job gaining weight. He left the hospital a week ago at 10 pounds 1 ounce and he now weighs 10 pounds 10 ounces. It would be such a blessing if it the pulmonologist allows him to skip the 2 AM bottle. Waking up in the middle of the night and then chasing Reed around during the day is taking its toll.

Other than being a little tired, all is well in our house. Below are new videos.

Reed's feet are Bigger

Sorry for the delay on posting but we have been busy with life. I feel like our life semi-stopped in March but we are now back where we should be. Home with two little boys. Everything is continuing to go well. Gaines is doing great on his oxygen and had a good check up with our pediatrician who we L-O-V-E. He endeared himself to us even more at Gaines’ appointment. Before we left, he asked if he could pray for Gaines. Knowing that the people who have been caring for Gaines are believers really make my heart smile.

I’ll try and remember the details…The plan is to get Gaines the RSV vaccination at his next appointment Oct. 2. The nurse is working with the insurance company to get it approved. The shots are about $1000 apiece and he’ll need one once a month through the winter months so hopefully the insurance company won’t have a problem with it. He’s considered high risk so it should work out fine. Gaines is one of their top customers I’m sure so hopefully they’ll push it on through. It will be a drop in the bucket compared to everything else they’ve paid on him.

The only mild cause for possible concern is that Gaines has gained a good bit of weight in the last few days. The question part of this is that he has been weighed three times since he was released and once right before…each time on different scales…so four scales. First he was 10.1 then 9.15 then 10.6 then 10.10 (those are ounces after the .) His SATS seem to be the same, he doesn’t look like he’s retaining fluid (puffy) and his lungs sound great (or as great as his lungs can sound) so HOPEFULLY it is just good real weight. Our pediatrician spoke with one of our NICU doctors and he wasn’t concerned so I think it will just be something that we watch. He’ll get a few weight checks in the next couple of days so maybe that will tell us more.

We are settling into a sort of routine at home. I don’t know if you can ever have a good routine with small children but we have some sense of what’s going on when. I’m not really sure how we are going to manage things when my mom leaves on Friday but we’ll figure it out somehow. The house just might not stay as straight, the dishes my not be washed as often and we might make it down to our last pair of underwear before the laundry gets done (and lets not forget those thank you notes)…but isn’t it great? Not too long ago I had all the time in the world to do that sort of thing but Gaines wasn’t home with us. I am really trying to embrace all the frustrating parts about a new baby (nighttime feedings, spit-ups, diapers, etc.) because I know just how close I came to not having those parts.

Reed is still doing great and actually touched Gaines for the first time last night. Its not that we haven’t let him…he just hasn’t been that interested so for the sake of Gaines’ health, we haven’t pushed it. Last night he touched Gaines’ foot and put his foot up to Gaines’ to compare size. We had to take of the orange and pink fuzzy socks of mine that Reed was wearing up to his thighs to do it, but feet were compared and unsurprisingly Reed’s were bigger. Reed also helped with Gaines’ bath last night (and by help I mean he squirted soap in my hand) but he was really interested in what was going on.

Brittany

PS-A few questions were asked in previous comments. Gaines does not have a SAT monitor belt...it is probe that wraps around his foot. Also, Reed does still attend daycare. We thought this was best for Reed and would allow Gaines' nanny to focus on Gaines.

Hibernating

Things are still going really well with Gaines. We’ve been a little MIA lately trying to settle into a new family of four routine. I think we are getting the hang of it. Gaines is doing really well on his oxygen at home and passed his blood gas test this morning with no problems. The thing we are most concerned about with him are his feedings. We are trying to figure out a schedule that gives him all the volume of formula that he needs every day. There are many times when he just will not take his bottle because he is so asleep. Not a huge deal with a regular baby…you just get off schedule. With Gaines, if he misses a feeding he misses a lot of nutrients that he needs to help his lungs continue to heal. I’m trying to not let it stress me out but I’ve caught myself twizzling my hair a lot today…a sure sign that I’m worried about something or deep in thought. We go to the pediatrician tomorrow so I’m hoping that he will be able to offer some insight.

We have a lot of appointments right off the bat but I think after the initial ones they will settle down some. We will also have home health nurses coming by twice a week to keep an eye on him. Nothing major, I think they just check weight, temp etc and look for any problems that we could be missing. I’m also trying to get Gaines enrolled in Alabama ’s Early Intervention Program. This is a program for babies/toddlers that are 25% or more behind in their development. The program will provide free therapists that will come to our house and work with Gaines. This is wonderful since many insurance policies do not cover physical type therapies. I haven’t researched mine yet but either way, I think it will be great for Gaines to get a little extra help.

I’ve been doing his stretches and working on his neck strength and I think they are both getting better. That could just be his mama talking but I think I see improvement.

I’m sure there are a million other things I’m forgetting to tell but that’s about all I’ve got for now.

Oh, Reed and Gaines seem to get along just fine. Reed likes Gaines and is interested in him but doesn’t get in his face and love all over him which I think is a very good thing right now. He knows which things belong to Gaines (“Jaines’ bed, Jaines’ chair”, etc) and looks for him in the mornings…once he remembers him.

My mom is staying with us this week and has been really helpful. We gave Gaines a bath last night and I think he really enjoys his little tub. He cried when he had to get out. Maybe he’ll get a bath the next time he wants to sleep through a feeding!

One more thing…this morning Jack (who sits on the back of the couch and looks out the window all day) saw something outside…probably a squirrel, so he started barking like crazy. Well Reed ran over there, jumped on the same couch and started barking and howling out the window as well. It might not be that funny to read about but it was hilarious this morning. We’ve also caught him several times walking around with toys in his mouth…kind of like how Jack carries them. He is such a funny little boy.

Reed had a runny nose over the weekend so please pray that it doesn’t turn into anything more and that Gaines’ appetite picks up soon. Other than those two things, we are doing great and loving life at home…hibernating for the winter.

So Far, So Good

We've made it through the first 48 hours.

Thus far Gaines has adjusted pretty well to life at home. Before we brought him home, my biggest concern was that he would require extra oxygen once he was in our house. I guess my thought process was that he was doing so well in the hospital...a sterile environment. Our house is not a sterile environment. How could it be with a dog and a two year old little boy? I figured the new environment might cause him to require more than 1 liter of flow. Fortunately he is doing great. His breathing has actually been really good.

The only concern we have had since we brought Gaines home are spit ups. He spits up a lot. Our doctors assure us that his frequent spit ups aren't anything for concern. However, it does mean that we frequently clean up after him.

Again, so far, so good. Hopefully we will have more time to update later.

Beau

We're Finally Home

Brittany and I arrived at the hospital at 8:00 this morning after dropping Reed off at daycare. It was very surreal to be walking into the hospital knowing that we would be walking out with Gaines. After about 3 hours of too many details to mention, we loaded everything into the car and drove Gaines home. It was really neat to see him squint as we walked out of the hospital and into the sunshine. He has been outdoors only once before (during the transfer from DC) and that was at night. He saw the sun for the first time today.

The home health care company arrived at our home shortly after we did. We are now experts at all of the machines and gadgets. Right now Gaines is sleeping, his SATS are 97 and we are trying to put all of Gaines' stuff away. In just a few minutes I will go get Reed from daycare and he will see Gaines for the first time in almost two months.

We'll post more later...below are a few pictures from this morning. The first is of Gaines smiling at us this morning when we arrived at the hospital. The second is of us as we left the hospital. The third picture is of Gaines...happy in his new digs at home.

Beau