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

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

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

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

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

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.

video

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

Sunday, November 1, 2009

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.